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Odontogenic Keratocyst: Overview and Treatment

I’ve gotten a few questions about odontogenic keratocysts lately, so I figured it would be good to write an article detailing what we know about them.

Before I get started, let me say that in 2005, the World Health Organization actually changed the name of odontogenic keratocyst to keratocystic odontogenic tumor.  It had been known as odontogenic keratocyst for nearly 50 years, since its discovery in 1956.  In honor of that tradition, and since most people still refer to it as an odontogenic keratocyst, I’m going to call it odontogenic keratocyst throughout this article.

For your viewing pleasure, here’s a photo of what an odontogenic keratocyst looks like at the cellular level — Thanks to Nephron for the photo.

Odontogenic Keratocyst

If you’re in the mood to see a picture of an odontogenic keratocyst after it has been cut out of someone’s jaw as well as the tooth, take a look at this case report and scroll down to the images.

What is an Odontogenic Keratocyst?

An odontogenic keratocyst is a benign tumor of the jaw (that’s why the new name, keratocystic odontogenic tumor makes sense.)   It is associated with an unerupted tooth about one-third of the time.

One of the reasons dentists recommend extracting wisdom teeth is that they can stay in the jaw and make it more likely that you’ll get problems such as an odontogenic keratocyst.

Odontogenic keratocysts grow inside your jaw bone, so you can’t see them.  They usually don’t cause your jaw to expand, they simply eat away at your bone.  They are able to move your teeth and even eat away at them.

What Causes an Odontogenic Keratocyst?

It’s not exactly known what causes an odontogenic keratocyst, but we know that it comes from the dental lamina.  The dental lamina is just a fancy name for the tissue that helps to form a developing tooth.  After the tooth is developed, this tissue is normally dissolved.  Sometimes the tissue sticks around and can give rise to an odontogenic keratocyst years later.

Where Do Odontogenic Keratocysts Occur?

They most often occur in the lower jaw in the area of the wisdom teeth. It has been reported that 60-80% of odontogenic keratocysts occur in the lower jaw. Approximately 1/3 of the time, odontogenic keratocysts are found in the upper jaw in the wisdom tooth area or the canine area.

Who Can Get an Odontogenic Keratocyst?

People of almost any age can get an odontogenic keratocyst.  Odontogenic keratocysts are more common in males than females. Some sources say that the peak age ranges from the teenage years to the early 20’s.  Another source says that 60% of all cases are diagnosed in people between the ages of 10-40.

How Common are Odontogenic Keratocysts?

I literally looked at about ten oral pathology textbooks in the library today trying to answer this question (posed by Stephen in this comment.)  The best I can do is to say that odontogenic keratocysts are rare and that they make up about 5 to 15% of all odontogenic cysts that are reported.

How is an Odontogenic Keratocyst Detected or Diagnosed?

An odontogenic keratocyst can be detected by routine dental x-rays.

Smaller odontogenic keratocysts usually don’t have any symptoms associated with them and are only discovered by taking routine x-rays. This is why it is important to have periodic x-rays taken at your dental checkup.

Find out how often you should get dental x-rays taken.

If an odontogenic keratocyst goes undetected and gets big it may burst, leaking keratin into the surrounding area in your jaw and causing lots of pain and swelling.

Treatment of an Odontogenic Keratocyst

Although there are promising new techniques to treat an odontogenic keratocyst, the most common method of treatment is simply going into the jawbone and removing the odontogenic keratocyst.

Recurrence of Odontogenic Keratocysts

It is estimated that about 30% of people with odontogenic keratocysts that have had them removed will get them again.  Most of them will recur within 5 years, but they can recur 10 or more years after they were oroginally removed.

Because of this is is extremely important to routinely follow-up with your dentist or oral surgeon so that they can take x-rays to ensure that it has not recurred.

It seems that odontogenic keratocysts come back for one of two reasons:

1 – The original odontogenic keratocyst wasn’t completely removed, and fragments that were left behind have started growing again to create a new odontogenic keratocyst.
2 – An entirely new odontogenic keratocyst has developed.

Neville & Damm’s oral pathology textbook states, “Odontogenic keratocysts often tend to recur after treatment.  Whether this is due to fragments of the original cyst that were not removed at the time of the operation tr to a “new” cyst that has developed from dental lamina rests in the general area of the original cyst cannot be determined with certainty.”

What Makes You More Likely to Get Recurrence of an Odontogenic Keratocyst?

So let’s say that you’ve had your odontogenic keratocyst removed and then it came back.  Is there a way to find out if it was the surgeon didn’t remove the whole cyst or whether a new one formed?

This thousand dollar (really) oral pathology text states, “When recurrences develop, those associated with the surgeon leaving residual cyst lining in bone become radiographically apparent within 18 months.”

If you don’t get a new odontogenic keratocyst within 18 months of having one removed, you can be fairly confident that it was fully removed by your surgeon, but there is still a possibility that you’ll get another one simply due to a new odontogenic keratocyst developing.

Another thing that affects the likelihood of recurrence is whether or not the cyst is removed in one whole piece.  If the cyst can be removed in one piece, with the lining of the cyst in tact, there is a much lower chance of recurrence.  On the other hand, if your surgeon has to remove the odontogenic keratocyst in several pieces, it is more likely to recur.


This article was on a more technical subject in dentistry.  My goal is to write so that people can easily understand even these complex topics.  If you have any questions, please let me know in the comments section below.

Also, if you have or have had an odontogenic keratocyst, feel free to share your experience in the comments as well so that others who are going through a similar situation can benefit.  Thanks for reading!



  1. My 20year old daughter
    Has been diagnosed with having a keratocyst which has expanded into her sinus cavity and is placing pressure in her eye socket. It was caused by am impacted wisdom tooth. We need immediate surgery. We live in new jersey. How do I go about finding a top surgeon for the removal of this cyst?

    • Our 15 year old daughter had a massive one removed in May – sounds very similar to your daughter’s – through orbital floor, into nasal cavity, destroyed roots of 3 teeth…went to Dr. Anthony Farole in Bala Cynwyd PA and surgery was done at Thomas Jefferson in Philadelphia….we went back to him to remove wisdom teeth from her and her twin sister few months later and despite the drive will use him for anything our family ever needs in the future…hope this helps and good luck!!

      • I am a 61 year old female and at one point I was a few years back, I was sent to an oral surgeon to remove a cyst that I had been complaining about for years. I was about to have dentures made and I would NOT allow it until it was taken care of. I didn’t mention that when I was 21 I was in a head on car accident and it knocked out my 6 center bottom teeth. We tried desperately to save themby pushing them back into their sockets and wired them together until they were stable. It worked wonders for years. When I was in my late 40’s they started getting gum resorption(sp?) meaning the gums shrunk away from the teeth and it left behind acyst. I complained a lot about it. To the surgeon…you are going to love this one…he said there was nothing therebut he opened it up anyway. He went to the other side of where I showed him and planed down the bone!!!! I mean can’t they see these things in their orbital x-rays? Now I’m panicked because I have nothing holding my tongue in place and Every day it’s noticeably smaller!! I am on disability because my vertebrae are crumbling and landing on my spinal cord causing severe pain. I don’t know who to go to for my jaw!! PLEASE SOMEONE HELP ME!! I’m on government insurance and their doctors don’t seem to know ANYTHING!! Where do I go!?!?

        • I’m not sure if anyone replied to you, but I really think you should go for legal representation if they did a surgery on an area by mistake! I hope you are ok and get this resolved

        • Advised you to meet an expert Maxillofacial Surgeon qualified with MDS and Phd. You may also undergo with a test called CBCT Maxilla Mandible. It helps the doctor to analyse about the cyst for 360 degrees and can be operated to remove the cyst, clean the area with carnoy solution and it will be stiched. You will have the pain and swelling for about a week. But gradually you will be alright. Ensure that you are under observation for every six months with a dental x-ray report as per the doctors advise. Because the nature of this KCOT is that it may occur. It happend to my wife, hence I have done enough research on this area.

  2. your information is great.yesterday my husband[63]yrs had surgery and removed his kerato cyst.he still has some swelling and some pain.He had no signs or symptoms but a little pain when he went for his routine dental check.two weeks later,his lower jaw was painfull.a series ot tests were done,the cause of the pain was finally detected’kerato cyst’. the xray showed there was a build up of fluid underneath his teeth[lower jaw]the fluid was scringed at the hospital,two days later it filled with puss,extreamely painfull and swelling.finally the operation was hoping for full recovery.higiene is of the uttmost importance, medical mouth wash and proper care is vital to stop infection.
    my advice…no pain especially in the mouth area, should be ignored.have it checked,exrayed immeadiately.

    • Thank you for your post. I to am a 63 Yr old when a hugh K-Cyst was descovered after , what I thought was going to be a routine back tooth removal. The oral surgeon is very concerned that my jaw will break if I chew ANYTHING harder than scrambled eggs. I am scheduled for surgery at the hospital in 10 days. I have little idea what to expect……Any info appreciated

      • HI,

        I had a large odontogenic cyst removed from my lower jaw last January- ( age 59). It went from back molars up to front teeth and crossed midline. I had no symptoms, discovered it during routine full mouth x-rays.
        It was removed in the hospital under general. My jaw had been eaten away by the cyst as well, thin as a “string”. Cyst was attached to the nerve, so lost sensation, not function or appearance.
        I had to remain on soft foods for 8 weeks. In my case I made my regular meals and then blended them up – lots of flavor, no texture.
        I recovered from the surgery well, showed no recurrence at 6 months. Today at the one year mark, went in for an xray and it has recurred in a much smaller version so…….under the knife I go again. surgeon says it will be an easier surgery and recovery due to the size- jaw is okay so not as much soft food diet will be required. Breaking that string like jaw was the concern the first time out.
        Good luck, the surgery is a must as you know.

        • All – I had a KCOT removed from my left jaw in January of 2013. Insurance covered biopsy and all treatments leading up to the surgery. They have denied coverage for all services associated with the surgery (surgeon fee, facility, anesthesiology) for a total of about $25,000. Did anyone else encounter insurance difficulty? This is medical insurance with BCBS – not dental.


          • Six months ago, I had a huge keratocyst removed from my lower jaw.My BCBS medical required prior authorization to cover the procedure.( I did not have dental insurance)However, BCBS only reimbursed the oral surgeon $700 for the entire procedure done in his office, including anesthesia. His office accepted the payment as he was under contract with them. This week I had to go back to have the same area in my jaw cleaned up again.They scheduled the surgery next day after my xray, and it would be unlikely that a P/A would be complete that soon. It will be interesting to see how they are going to bill me.

            • My son had his having his removed and we have BCBS. However the Dentist I went through was not in network and the type of medical insurance I have does not cover out of network. The Dentist charged Delta Dental and we had to pay about $1100. He’s had a decompression tube inserted because of the size. I’m not sure if that’s the difference in cost but I didn’t see any high charges like that. He’ll have this tube for about 6-8 months because of the size. It allows the cyst to get smaller and bone to regenerate. By then I’ll have another annual max amount and he’ll remove the cyst and wisdom teeth.

            • Me Stang
              My daughter just had this same surgery and also had a decompression tube put in & it will be in for 8-10 months, they said she will need another surgery in 12 months & she will be monitored for 5 years to make sure it is completely gone.
              I was just curious if Anyone has any post surgery pain management ideas They’ve put her on Percocet and Ibuprofen but it doesn’t seem to be working to well (should we ice or put heat on it to feel better) ? Please anything might Help

          • I am having the same problem with BCBS of Texas. My daughter is 25 and has a $31,000 hospital bill and I am currently fighting it. Are you still fighting yours?

          • Wow my story exactly as is was “not medically necessary”. I had a bone graft as well due to a deteriorating jaw from the cyst. Yes bcbs was my insurance as well. And best part mine grew back and i have surgery again in Sept.

        • Hi Carol–did you ever regain sensation again? Has this affected you in anyway? I am having surgery on my second odontogenic cyst and they are concerned that the nerve is going to be affected. This is my largest concern as well. Do you have any feedback you can provide?

          • Good morning George I was reading your comment on your odontogenic cyst I had my remove two time and it reoccurred again , I visit four doctor about cyst all of them wants to do surgery on it and removing the jaw bone . i would like to have it scraped out again , would you be able to recommend the doctor that you use to remove yours without a major surgery . thanks !!

        • My husband has just been diagnosed with same as you had…did they remove all the teeth to centre front ones? This is something we are not sure of…specialist seems to want to use aggressive surgery, husband not happy, had biopsy 3 weeks ago still has lots of pain from it…wondering if others had this?

        • hello carol is there any way that I can call you to talk to you about the surgery because , I think I may need this surgery , I’m looking to talk to somebody and get some good feedback on surgery . if you could email me contract information to speak with you would be a big help on my decision . thanks

  3. I’ve been searching for OKC on literature and this one is the most comprehensive and easy to understand. Thank you, Tom.

  4. I was recently diagnosed with OKC after being referred to a oral & maxillofacial surgeon following a light, routine teeth cleaning appt at my dentist! 🙁 My cyst is about 3 cm (fairly large) and I am scheduled for cyst enucleation in about a month. Needless to say, I am a bit nervous and have been doing a lot of googling, only to come across hard-to-understand papers and literature.
    Reading this post has helped relieve A LOT of my anxiety, and I have a much better understanding of OKC, treatment, prognosis, etc.
    So, thank you!

  5. Hello, Thanks for this info, i’ve had 2 of these cysts and have just found out that for the third time it’s come back, i’m sick of having to go under the knife but what else can be done? my only concern is that there are no beds available to have surgery an that i may have to wait 8months to have it removed, this cyst has been growing in me since jan 2011 and was only told about it in feb 2012, how soon should this kind of cyst be removed as i could’nt see it in your info, an the last 2 that i’ve had removed was in a matter of days, if you could get back to me would really be greatfull manythanks sianie.

  6. I have just been diagnosed with my 3rd odontogenic keratocyst. My first in 1993 required extracion of 3 teeth and bone graft in lower jaw. My 2nd in 1998 was a reoccurance and required a lower jawbone replacement (cadaver) and graft. Now, my latest, is attached to my parotid (salivary gland) and is going to require extensive surgery, this time involving delicate surgery involving facial nerves which are wrapped in with the keratocyst. Not much fun. I am hoping for a successful surgery and quick recovery. I am 60 years old.

    • i also have a keratocyst in the left mandable in my jaw. i am on my second drain and tube and wires. my question is do you have a constant headache on the side your cyst is? if you split my left side of face down the center on the left the pain is unbearable, and my doctor thinks im nuts. the eye pin behind my eye is constant..would love to know if anyone had the drain in. had mine since august and a new one in in february.

      • Marie, My son was just diagnosed with the Cyst and had a drain tube installed as well, and up to this point he hasn’t had any issues, in fact the pain that he had due to the pressure has been somewhat relieved.

    • Phil,
      I hope you have a successful go this time. I am 63 yr male and they found a hugh K-Cyst covering most of the left of my jaw. The Oral Surgeon is very concerned I cound easly break my jaw should I try to chew any food. Since they found this 3 weeks ago, I live on applesauce and scrambled eggs, I have lost 25lbs but I have the weight to loss as I am 6’4 300lbs ( now 275 and droping) . My question is the jaw bone replacement you went through. I may very well be facing this…Can you give me any ‘heads-ups’ on this?
      I rather know what painful recovery to look forward too ahead of time. Thanks & GOD BLESS ! Douglas

  7. I’m going in today for another X ray as there’s tingling and swelling in the surgical site where I’ve been twice for a keratocyst removal. The worst part is the anxiety. I can deal with the pain, a little weight loss, the constant swishing of salt water. The worry about it coming back is the concern as the cyst is so close to the nerve running along the lower manbile. It’s life, I suppose and we’ll all be fine, perhaps with a few bumps and bruises along the way.

  8. My daughter was 12 when we discovered through xray that her eye tooth had not dropped down and that a massive cyst had wrapped itself around it and cut off the blood supply. The oral surgeon had to drill a qaurter sized hole through her gum and bone to clean out the cyst. She had to irrigate the hole every time she ate. She was still wearing braces and the orthodontist felt after a time that he could put a pull chain on the eye tooth to bring it down into place. One day my daughter came to me and showed me a white spot protruding through the gum. The odontogenic keratacyst had come back with a vengeance and was pushing the eye tooth right through. At that point the oral surgeon said we needed to have everything taken out on the top right(the teeth, gum, and bone.) It was devastating for my daughter but I was so proud of her. She went through junior high, high school, and college taking out the partial every time she ate. She finally had surgery to have bone harvested from her hip and implanted in her jaw. It started to reject so she had to wait a little longer for the next procure. She found a prosthodontist to make the permanent partial and it was very difficult for him. It took many tries before he was able to fit her properly. He had never dealt with a case like this so it made us very leary. Approx. 4 years later my daughter went through the process again of getting a new partial from a more knowledgeable prosthodontist. Needless to say 17 years later I believe she has finally finished. I still worry that another cyst could lay dormant and rear it’s ugly head. I pray that never happens.

  9. Hello,
    I am age 62, considered a healthy average male and recently went in to have tooth ( I believe the number was #31) removed. Once removed , if was obvious I have a cyst, Once the pathology report came back, it was described as a large, very imflamed “OKC”……..My question is, my Oral and maxillofacial surgery said he only see this and deals with this approximately Once a Year. he seems like a very nice guy and we are in the ((Draining stage..Today he said we are starting to see possitive results after 6 weeks of this)) Based on this limited information, would you consider a ‘second opinion’ maybe someone ‘more aggrassive. I live in Northern Indiana…Any suggestions, tips, info, etc is greatly appreciated….One final point…It appears my cyst has spread over a good portion of the lower jaw bone…enough where I am ask to eat nothing stronger than apple sauce or liquid drinks as they are concerned I could break the jaw bone,,,Then the surgeon said I would have ”real” problems then…THANKS for any help and info

  10. Hi I had an OKC removed in 1999. Evidently I was lucky to be in Ann Arbor Michigan under the care of Dr. joseph Helman at university of Michigan Hospital. I had a very large golf ball sized in my right upper maxilla. No reoccurence! 10 years of check ups. Dr. Helman is touted as the OKC expert in USA. He does beautiful work, no external scars despite bony involvment. Very happy and healthy.

    • Hi, Im wonder if you did a pano xray annually to moniter for reoccurences? Ive had mines removed a year ago. Now im worried about radiation.

    • I have had the same surgery, and now I have very visible scars, and numbness in the right side of my face. I was told by doctors that the feeling would return, but it has not. Its been 6 months what should I do?

    • Dear Ann I’ve just ha a. Keratonic cyst removed optician was ok now waiting to c if it’s back in two months of never heard of such a thing I’m scared love already go osteoporosis I’m 72 and love to sing just bought a p.a. system I’m on the u tube jeanie b singing blanket on th ground i’ve wrote songs and poems and trying to do my bucket list luv so keep ur mind off this thing and trade happy thoughts .keep busy let’s both of TRY remedies for a cure take care luv.

  11. This is my first keratocyst or Cyst of any kind in the Jaw. Once this is resolved ( I currently have the marsupialization. The oral surgeon has hope this will greatly shrink the cyst to make removal easier…In some cases, marsupialization can comp[letely resolve the Keratocyst, but I have never been that lucky……..regardless, once this cyst is resolved, I plan to have the correct x-ray every 6 months for at least the next 10 years……..
    To all those who have written, , THANK YOU ! ! ! Doug

  12. I’m 56 and just had my second keratocyst removed a couple of days ago (thanks for post and comments). So disappointed I got another one. The first was about a year ago, so I was due for another CT head scan to see if I was in the clear, and bingo, there was another one. Both were on the right side and not attached to teeth or jaw and both in the upper gum area. I haven’t had wisdom teeth (upper or lower) on that side for more than 25 years. Following what I have read here, I will find out if the whole thing was removed in tact, but I guess even this doesn’t guarantee it won’t come back. Does anyone know if blood noses are linked to having a keratocyst? I’ve been getting them and even though doctor says they aren’t linked, I do wonder.

    • Make sure you have a very experienced MD. Call Joseph Hellman or University of Michigan dept of Oral and Maxillo Facial Surgery, and get a name. Sometimes I believe teaching hospital will take cases for the experience, but they usually are under the direction of some gooroo MD who know a whole heap about what they are doing. Go to a teaching hospital none the less and get some real care. These cysts are very hard to identify. They are so rare that many MD’s don’t even know what they are looking at, and don’t know exactly how to treat. Good luck

      • Hi, my name is Blanca, i also have an OKC cyst and am struggling to find a doctor who is able to treat my case. i have had it come back three times and i am sure i have it again. i am going to a dr today in crystal lake. I hope he can take care of it. i was wondering if you know if the dr who treated your does jaw replacements or partial jaw replacements?

  13. Anyone have any advice on irrigating the marsupialization? I am trying to irrigate my 8-year-old son’s marsupialization of an OKC, and it is not going well (to put it mildly.) I’m looking for tips to make it easier, or at least functional. Thanks!

    • Dear Alyssa,

      I don’t know if I can be of any assistance or not but I found the ‘plunger device’ the dentist gave me to clean
      the marsupialization did not work very well. I found two others who have had this procedure and both said they got best results using a water pic on the LOW setting with Luke-Warm water.
      This should not cause any pain, however it is probably upsetting for an 8 year old. ( The fact that an 8 year old has to go through this nightmare in the first place is more than upsetting in itself) .
      You might try showing your son what needs to be done and let him take over. You might have water spray all over the place but that is a small price to pay if he ( in a small way) have some fun with it.
      I hope and pray things start to go your way…….Doug

      • I think the waterpik on low would have been too much pressure for marsupialization. Look for a syringe to push water into the space provided. They come in different sizes and strengths and some even have curved tips.

  14. To ; Make Life Lemonade;

    You may be right on the water pic on low being too strong. This works great for me and the two other people I mentioned. One of the other two is old like me in their 60’s but the other is a teenager, however I would not want this 8 year old to have any additional problems if you think the pressure is too high. Your suggestion on the syringe is probably best……

    • Douglas, I see your comments are a few months old, I am curious to know where you are at now in this process?

      I am 27, diagnosed with a very large OKC in March 2012. Had my drain put in April 2012, now 10 days out from my enucleation/cryotherapy surgery. I have an amazing doctor at Massachusetts General Hospital and I am confident he will keep my recurrence chances very low… everyone is worried though because my OKC extends from the spot where the jaw bones connect by my left ear all the way down almost to the middle of my bottom jaw.

      • Hi Amanda,

        Sounds like your surgery went well. I would appreciate if you can give me some “heads-ups” on how you handled the surgery. My OKC started for me back in April 2012. I decided to hold off on the surgery and went with the Marsuplization (probably spelled this wrong) anyway, my doctor explained it to me as turning the Cyst into a ‘pouch’ and allowing it to shrink. My last reports have been very possitive and the Cyst has declined and I am regaining bone matter and strength…However, just last week, My doctor said in one breath how well my procedure is going but then said we should probably go ahead and do the surgery on what’s remaining….Now, he has me super confused as with all I have read, there is a small chance my Marsuplization may take this Cyst to the end, in 15-to 20% of the times, this can happen and then there is no need for surgery..So, I have decided to ‘hold the course’ for at least 3 more months…This Marsuplization is a big hole in the lower gum,,This procedure only works if you keep it super clean and I am a fanantic in keeping it clean but it gets old fast and I must admit I am tired of cleaning this all the time…..well, I have rambled on too much…I look forward to any details you can share on your surgery…I wish you all the best..GOD BLESS ! ! and MERRY CHRISTMAS ! ! !…Doug

        • Doug, my email address is if you’d like to email me there, it would be easier to keep in touch!
          I, too, have the hole in my lower gum, since April. I have a plastic drain in the hole that is stitched to my tissue so the hole won’t close up. I’m same as you with the irrigation constantly, what a pain! I can’t wait to be done with this… but that means surgery, which I’m not exactly looking forward to. But, my OKC is much too large for it to shrink to nothing by itself… My surgeon will take it out and also use liquid nitrogen in the cavity to kill off any microscopic cells that may get left behind after he removes it… it’s called Cryotherapy. Greatly reduces the recurrence rate (from 65% with surgery alone to 15% with the cryotherapy).
          Sounds like maybe yours is too big to not have surgery? Like me… my doctor says I’m a model patient with how well my bone is growng back etc etc but there’s just no getting by without surgery. He wanted me to wait until March, ideally, to get it to shrink a little more and with the shrinking the lining of the OKC gets stronger which is better for surgically removing it… but I am getting married in May and I need to be in tip top health at that time 🙂 So surgery is on 10 days on December 18… I’ll be glad to fill you in on the process and recovery. Honestly, people’s blogs online were my best source of research when I was diagnosed, so any information I can give I surely will.

          • Amanda,I just posted on this Blog for the first time….I wanted to say I wish you well on your surgery Tuesday!!I have been reading these post off and on and was hesitant on posting..Anyways thought I would share whats gone on in my life with these OKC`s…..I am 43 and this will be my first surgery that has HAD to be on the outside of my Jaw…I will be having major surgery on Jan11,2013 unless my Jawbone breaks before then..If you have any questions Please feel free to ask..

            • Hi Tammy,

              You are very brave. My daughter has been dealing with the after affects of her OKC since 1992. She recently had two huge Pyogenic Granulomas in her upper mandible that required multiple surgeries and many steroid injections. Yet after these extensive treatments, the granuloma’s returned. At that point her permanent partial had to be removed and the surgeon was worried that her implant screws would have to be removed as well. Once the partial came out, it was almost like a release of pressure. The prosthodontist cemented her partial back into her mouth and this past week the oral surgeon was amazed that the granuloma’s had totally disappeared. Maybe there was an air pocket that created pressure that created the granuloma’s. Who knows. The point is Tammy, make sure you are absolutely comfortable with your surgeon, that he or she has had extensive training in OKC’s, a teaching hospital would also be advisable, and that you be your best advocate. My daughter never gave up hope, but she was close to it this time around. We are hopeful that she is out of the woods but mindful that something could be lurking around the corner. We pray not.

              Best of luck to you.
              Greta Miner

      • Amanda,
        Please let me know who is your doctor at MGH. I am trying to find a very good oral surgent for my son removal of keratocyst.

        • Hi Lana,
          My surgeon is Dr. Zachary Peacock at MGH. I would recommend him to anyone in the world. He has truly been a gift to me. He’s kind, gentle, patient, brilliant, down to earth… I never felt like he was talking over my head or that I was just another person in his chair. He really cares. And its so nice to have a great doctor I feel comfortable with because these OKCs are a long process of many visits with the docs, sadly enough!
          I just had my enucleation surgery about 3 weeks ago. If you want to chat about anything, my email is


  15. My 21 yr old son had OKC removed in 2010, he had his latest X-ray last month Sept 2012 and it showed there are pieces left or that have sprouted from the original cyst. Dr said he will first send him to check if the roots are damaged from previous surgery since he is having cold sensitivity and them follow back up as he plans to do either hole in gum to hopefully draw the other pieces out or remove teeth and this would be pretty serious as he would have to wait for bone to grow back to even have a partial.

    I don’t see either of these options very good ones…why can’t they go back in and get The piece or pieces missed or that have sprouted from out like last time.

    I am not sure what’s best. He has to make a decision on his own. He is a smoker and I am sure that this would be very dangerous if he continues with either of the procedures.

    What happens if he doesn’t do anything?


  16. The only other option was to cut out the jaw bone and his teeth remove rest of the tumor and replace bone with a piece of his hip then eventually would have a partial. Not. Good option either.

  17. I am 43 and had my very first Keratocyst in 1989 and had my first surgery on one in 1999…..I have had several and the Biggest one I had was in 1999.It had consumed my whole lower right Jawbone.I had one in 1996 that busted and one in Dec.2005 which required surgery..My Jawbone had to be scraped and a plastic tube sewn in the back for the cyst to drain and me to keep clean with a Syringe..So I have another Keratocyst in the same Right Lower Jawbome but this time I will have part of my Jawbone and the Socket replaced along with removal of the Odogenetic Keratocyst…I am having my surgery at LSU in Shreveport,Lousiana by a Maxiofacial surgeon Dr.Kim….

    • Hi Tammy, thank you very much for the well wishes, I really appreciate it! I am pretty nervous about the surgery but I know I will get through it. If you’d like to chat via email my address is To be honest, your situation seems to be the future I am most scared for. I am only 27 right now going through the removal of my first surgery. I have had my drain sewn into the back of my mouth as well for about 8 months. My OKC is so big that I have a gut feeling my doc won’t be able to get it all and it will just come back. Although I am trying to stay positive, and my doc is GREAT. I go to Mass General. My doc will also be doing cryotherapy – have you read or heard about this technique?
      Hope to talk to you soon!

    • Can you give me information on your recovery time and thoughts of the surgery, if you had to do it all over again would you have the surgery or would just have it scraped out again and monitored it ?

      • Hi Chris- have you been able to find out anything about recovery time? I get my biopsy results on Monday, but they’re thinking it’s an OKC. Things sound pretty nasty. I would be interested to hear what your treatment plan is thus far as well. They put in the tube during the biopsy, and it’s only been there a week. I can’t imagine having to have this in for 8-10 months like some of these accounts say.

  18. Hello,

    Glad I found this forum. I am 36 yo male, 4.5 cm OKC in mandible from ramus to wisdom tooth. Just had the marsupialization performed today. No plug for it, just open rubber (?) tube sutured to gums. Now the waiting begins …

    • Hi Stephen,
      Glad you found this site, I was happy to have found it as well… I am at my 6-week post op as of tomorrow from my enucleation surgery. Found the OKC April 2012, had the marsupialization about 10 days later, had the rubber drain in for about 8 months, and had surgery to remove the OKC on December 18. Tomorrow I go for my 6 week check up and XRay – if everything looks okay then I can get off my liquid diet and move to soft foods… that’s been the worst part about the surgery/recovery! My OKC was 3cm throughout my entire left jaw, ate away at my bone bad. Bone is finally starting to grow back now. Fingers crossed for you, Stephen! If you have any questions feel free to email me

      • Hi Amanda,

        I know it’s been a long time but wanted to let you know how things have been going and see how your recovery has been….From what you told me, your surgeon has a reputation as one of the very best in the country. With the freeze tech. (( My surgeon does not do that procedure)) your chances for another re-occurance is very low….So, How is Married life?? I pray it is going well. This spring We will have 43 yrs. in…When you have the right spouse, it is the greatest life but does take work & give & take……Well, enough of that,,,didn’t mean to ramble on……..My Keratocyst has gone down 80%. The marsupialization seems to have worked out, but it’s as far as it can go….I get the surgery to have the rest removed, probably first of December…BCBS is freaking out over the procedure but I think they will pay….People have NO IDEA what a nightmare this Obamacare is going to cause….We already had a fthreecompanies in area that are either closing (2) and the other moved to Mexico….I only mention it as all I need now is the insurance to pay this legit claim….As Always, wish you the very best…Doug

        • Hi Doug, I’m glad to hear you are finally getting the surgery. Best of luck to you! I had mine last December. I go back for my needy xray March of 2014. I’m technically supposed to go in December but we moved it to spring time so I don’t chance getting bad news around Christmas! I hope your surgery goes well!

  19. Hi Everyone – Thanks for sharing your experiences. As a dentist, I’m often too busy to respond to comments, but I do read them all. This article has had nearly 3,000 pageviews since I wrote it, so while not everyone is commenting, your experiences are certainly being read by others and providing a great deal of help and insight to them.

    If anyone has any pictures or x-rays that you think would be helpful to others wanting to know more about their odontogenic keratocyst, feel free to email them to me and I can add them to the article above. Thanks for your comments!

    • Hi.
      Been read your site and letters.I have a specific son who 29..diagnosed with medulloblastoma in spine radiation 2yrs chemo..many prob since along with a large odontogenic keratocyst bottom front jaw ..removed surgically,8 yrs ago, along with several teeth .in last 2 years has been diagnosed with Gorlin Nevus syndrome at Duke MDC, so the brain tumor ..okc etc etc etc. Now for past several years jaw pain..dozens of trips to primary,ent dr., urgent care, dentist ..etc.getting worse as time goes on more and more frequent.Iam wondering and researching about others ..can this cyst compromise the jaw to cause ear pain?Are there others out there with this condition?My son is 29 in years but mentally and physically about 11yrs of age..Next appt is with oral surgeon..have kept up panoramic X-rays.Would greatly appreciated hearing from someone who going through same thing..thanks..have a great day..

    • Hello Tom , this blog has been very helpful to me. I could not find this kind of info elsewhere.
      I have an egg sized KCOT in my lower right jaw. It has eaten 2/3 of it . I have been told it is infected , but aren’t all such KCOTS infected , or is mine different I wonder . I have no fever or swelling etc. After the biopsy though I needed antibiotics.
      I was told just after my first x ray that it was very inflamed . A hygienist who cleaned and scaled my teeth last , said there was red under the gumline that she couldn’t explain , but she did not suggest I ask a dentist about it and nor did she refer me. It broke into the gum and the abscess that did not heal resulted in the x ray finding .
      I am due for a decompression tube to drain it prior to removal , but would there be complications if it is infected ? And what about the Carnoy’s solution used on an infected and highly inflamed area . any dangers there I wonder .
      I am concerned about this diagnosis of infected KCOT .
      The dentists are very busy , the oral surgeons I mean , as it is a teaching facility , and there is not much time for airing concerns, but I need some input. I would be very grateful if you could help.
      I am considering the homeopathic way combined with the supplement way , used by Patrick and Douglas, with the drainage tube, and hope that then , surgery will not be so invasive .

  20. dear Dr,
    i need to know what are the causes of pain in OKC, odontogenic keratocyst?
    and when occur what pain releifer can they get?
    and what are the branches of inferior alveolar nerve that affected?

    thanks alot

  21. Thanks everyone for your testimonies about your experiences. They have encouraged me.

    My maxillo-facial surgeon, Dr. Isaac Fordjour in Memphis, Tennessee is extremely good and gentle. I travel eight hours to see him.

    My first OKT was discovered Nov. 2011. One was in my lower left jaw and very large. Another smaller cyst was in the back right side. They were removed and later a bone graft was done to fill the gap left by the larger one.

    Just when I thought everything was fine and was preparing for implants, a new OKT appeared week before last but is much smaller. Now I am looking to have it removed and will lose the rest of my lower teeth with it. This was a big disppointment.

    When I found this site and read the answers and everyone’s testimonies I was encouraged. Thanks! I will make life lemonade!

  22. Hi my name is Blanca I am 21 years old. I have been dealing with this OKC cysts for 11 years now and i am glad to know i am not alone in this. I have been dealing with OKC cysts since i was 11 years old. It was first removed in 6th grade. It was a very painful experience when i had the biopsy done. The biopsy was done by students who did not reapply local anesthesia when it started wearing off, so i could feel everything they did. Once the Dr. came in he took over and finished the work. Worst experience i am now afraid every time i go under the knife. Another thing is they did not warn my parents that it has a high chance of reoccurring after the y took the cyst out or to follow up for checkups every year. I got braces to straighten my teeth. as time passed by i had developed a new cyst. I did not start suspecting anything weird or unusual until drainage was coming from my gum/tooth area. My gum also started hardening and growing. My teeth once again started slanting. I went to my dentist to get a new retainer but it did not help. I made an appointment to see my doctor and from there they referred me to an oral surgeon who took out the cyst. it was a pretty big cyst imagine 10 yrs worth of a cyst. oh was the recovery painful !! and once again 2 month later it came back. he removed it again but this time it was small and the recovery was much more tolerable. My current oral surgeon said he could no longer take care of it that i would need a more permanent treatment which would be a partial jaw implant, bone grafting,and teeth implants. I am having a hard time finding a dr who can do this work. many places say they cant or the insurance does not cover. i am scared that i wont be able to find someone who can treat my case. if any one knows of a good and experienced dr who will be able to do this work please let me know ! anything around the Illinois area would be great if not its fine i will take anything. i hope as i am sure many of you are to get rid of this cyst. i am glad to know i am not alone and that there are others who are going threw the same thing. i wish to all those getting surgery the best of luck especially in the recovering stage and to those waiting for treatment keep your fingers crossed!!! god is big and as i always say ”it could be worse” hang in there guys!!

  23. Jane Rogers
    22 May 2013 • 6:03 PM
    Hello, I am so glad to have found this site.
    My 17 year old son has just been diagnosed with his second keratocyst (Yesterday)
    He had the first surgery in December 2012. We are surprised at how quickly it has returned.
    My sons’ surgeon has suggested trying the marsupialization method to hopefully shrink the cyst in the hope that his surgery to remove the cyst will be a smaller operation.
    My husband and I are finding it difficult to help him and he has become very withdrawn lately and this news yesterday has left us all completely she’ll-shocked.
    If anyone has any suggestions on how we can support our son, I would be very grateful to hear them.
    I wish you all well with your treatments.


    • Hi jane, my name is blanca I am 21 yrs old. I have been dealing with this sincw the age of 11. I have had it removed 3 times & am waiting for my insurance to cover a biger must needed surgery. This has also depressed me and made me feel upset. What has helped me get through it is by reading more stories about others who are going through the same thibg and have a worse case than I do. It has made me gratefull that my case isnt as bad and could be worae. Maybe it would be a good idea if he reads other patients srories qho are going through the same thing so he doeant feel so alone.

    • Hello Jane,

      Yes, this is a lot for a 17 year old to deal with. For that matter, it was a lot for me to deal with and I was 62 when I first got the news I had this OKC. I was having a back tooth pulled when they discovered I had this OKC…..After hearing the options, I went with the marsupialization instead of the surgery….Everything I read said the only way this works is the keep the marsupialization super clean, which I did 4 to 6 times a day.All it takes is a waterpic on the lowest setting. This worked well for me. The surgeons goal was a 25 to 30% reduction..The Lord helped me through a very tough time and the Cyst is down between 75 to 80%….However, it has gone as far as it can go so I will need the surgery to clean up the rest……I pray for your son…A positive attitude is so important….easy to say but hard to deal with at such a young age…..
      If the marsupialization is done correctly and keeps it super clean, there is a good chance the Cyst will shrink and the pain level did go down for me….God Bless to you and Yours ! ! !

    • Hope yr son is doing well. I had a OKC found while having gum surgery in 2005 perio removed it(whole) came back in 2009 with a vengeance then found surgeon that would do decompression (drilling into cyst putting a drainage tube in for a few months) which is the least invasive procedure and can help prevent recurence plus I take SHH pathway inhibitrs to block this disregulated cellular pathway which is the main problem (culprit) with this cystic tumor. its been over 4 yrs now still clear/ didn’t have to lose any teeth

      • Dear Jane I am 45 and have been dealing with these Horrible, Depressing and painful OKT (tumors) since I was 21.
        I have had the Malsurpulation 3 times with the tube sewn in the very back of my jaw and have lost 3 molars due to this…In Decemberof 2012 I went to my dentist cause a tooth was bothering me and He didn’t even see the OKT but I sure did and it had come back up in my Jaw Joint and Socket…I just started crying cause I knew this was going to mean a very Major surgery…It took my Oral Maxo Facial surgen about a month to find someone to perform a Jaw replacement surgery and to also try to remove the OKTumor intact..I had my first jaw replacement surgery in Jan.10,2013 and it paralized the right side of my face for a couple of months and it was VERY DEPRESSING but a friend ,God and my Husband helped me thru that one…Not trying to be negative but these OKC and OK tumors are devasting and you never know what to expect when they continue to come back…I had to have my Jaw Replacement redone July,3,2014 and I will say that was the worst surgery ever…My smile has changed and some days the right side of my face will be swelled especially now that I am sleeping back in my bed..I had to sleep eleveted 30 percent and on my back for monyhs in a recliner..I don’t wish this pain,suffering and the depression it can cause on anyone…You have to Depend on GOD to help you through this,I’ve made it and I smile and Laugh ALL the time..If anyone has any questions please E-mail me I will be happy to help if I can…Everyone hang in there it;s very hard but I have been thru alot and as Elton John says “I’M still Standing” And at 17 it sooo much to take in and understand it very scarry….It’s more common in males and is supposed to be Genetic from the research I have done but,I am a female …..I wish EVERYONE well with these horrible OKC and OK Tumors…Especially the 17 year old.Bless his heart I will be praying for him Jane……

  24. Hello, I’m scheduled to have a large OKC removed from my lower left jaw next week. I’m looking forward to the surgery as I’m hoping it will provide relief from excruciating 24/7 pain. The part that makes me nervous is that the doctor said there is about a 20% chance that the surgery will result in permanent nerve damage because the cyst is so close to the nerve. Does anyone have any experience with this?

    • The Dr. my husband is seeing for his OKC is telling him that these cysts should not cause any pain and will not give him anything for the pain. We have had a hard time finding a Dr. that even treats this sort of thing. I am very disappointed that they are acting this way and not taking him seriously. I am sorry you were in such pain but to hear of other complaining of the same thing helps to know that we are not crazy

    • Yes Jeff…I posted earlier about what I have been thru….I have some permanent nerve damage in part of my lower right lip and chin…My surgaries were very complicated….

  25. hi iam a 30yr old female & im due for sugery within 2 weeks to have a cyst removed and jaw bone replacement. Does anyone know why these cyst reoccur? im beliv’n GOD for a full recovery. My prayers are with you all.

    • Hello,
      After reading your post, I along with several others will be praying for you as you deal with the Keratocyst…
      When I found out I had this cyst (( 18 months ago)) I was almost in shock and it took awhile for me to get my mind around it….Of course, the first question I ask was, “Why/ How did I get this” . The Oral surgeons answer was ‘ We are not sure, it’s like why some people get some illness and others don’t” ..So I read a bunch, everything I could find. Some good Info I got from this clinic in Brazil….In my case, it “MIGHT BE” I had a root canel which was not done correctly back in 1985. (( I am 63 yrs. old)) Anyway, some think having any ‘dead tissue” inside the jaw is like ringing the dinner bell for these things…..point is,,,what matters now is your decisions and your attitude, which sounds great to me….It’s easy to have Faith in God when things are going well,,it’s during the trials we face when our faith is tested……For me, it was to believe in GOD, Trust in GOD and Stand on his Word….For me, I wrote on my wrist the verse, ROMANS 8:28 ….Again, we will keep you in our prayers ! ! !

    • Same here I have had my jaw bone and socket replaced 2 times in 18 months and the 2nd surgery was horrible..I don’t want to scare you but my first replacement went great and I healed a month ahead of time….But the 2nd one was just hoorrible…I was swelled so bad my lips were swelled inside out..My surgeon could never tell me why it went so bad…Now I am changing surgeons because my surgeon kept telling me how complicated I was to fix and remove this OK tumor cause it was in my Jaw Joint and socket…They replaced it the second time cause I was having horrible pain,Rashes and couldn.t eat anything that had to be chewed…I have a metal plate around all the prosthetic parts and 9 screws….I just pray you and everyone else has a compassionate surgeon….

  26. My son had a OKC cyst when he was in the 7th grade and is now a sophomore in college. He has not had any problems since then, His doctor which was excellent had him come in to the office twice a week for 3 months for him to rinse out the area where he removed the cyst. He had to have x rays every six months for five years. Now he said to come back in five years for another x ray. I pray it never comes back. Is having an x ray with your cleaning enough?? I am glad I found this information but honestly reading all the experiences that people have had scares me!!

    Thanks, Lori

  27. Hi Lori, yes keeping an eye on it for many years is the norm. I had my okc removed last December. I have had probably 6 xrays since. I will go one a year every year for a long time I’m sure. Depending on how the procedure was done the recurrence rate is different. There are many people in this site that have had terrible experiences but keep positive for your son. If it does come back I’m sure it will be small enough to take care of easily enough! Best of luck.

  28. Hey everyone I just had a cyst removed, I was worried it was cancer but it’s a okc, I am currently recovering my oral surgeon wants to dig deeper to be safe and hopefully keep it from reoccuring, it grew very large over the course of 10 months it went from virtually nothing on an X-ray to now. Blanca I’m from Chicago I don’t know if you read this but there’s an oral surgeon who has been fantastic for me in orland park il south of chicago his name is dr.krombilapas he’s very aggressive and very compassionate

  29. I have had what was thought to be an abcessed tooth for 7 months. With 5 rounds of antibiotics and outpatient removal of infection. My dentist and the first endodontist that I went to were of differing opinion of which tooth was the culprit. After getting a second opinion from another endodontist. I was told yesterday that I have a keratocyst odontodentic tumor in my upper jaw. I was told by the endodontist that removal of remaining teeth would be a safegaurd against the secondary infection related to my tumor. I have TMJ and have over the years lost all of my back molars and currently wear a partial. It has eaten away a large amount of bone almost all the way back to the roof of my mouth. I wanted to know if removal of remaining teeth is necessary. I am 48 yrs. Old
    and have worked very hard to keep what remaining teeth I have, given the lack of proper diagnosis from the first endodontist, I am hesitant about the necessity of removal. I am also wondering after having read about treatments if removal of the tumor will be performed. I have not met with my MD yet but have an appt. I am sure that my anxiety about wanting answers asap will be understood by yourself and other posters. ANY info would be greatlynappreciated

  30. How amazing to see I’m not the only one as I sit here and googled about what I think is my kerotocyst reoccurrence 🙁 I’m sad ….. It’s been a little over 5 years I think and my pain is horrible …. I didn’t follow up as often as I should have so please be consistent and try and prevent this pain I’m in ….I haven’t had my X-ray yet my appt is in a few weeks but I’m sure it’s back … And dread the surgery…. I can’t open my mouth to chew without discomfort…. Is there anyone who has had a reoccurrence and what relief did u do for the pain?angibotics ? Aleve? Emergency surgery ??

  31. I had a Keratocyst removed from my upper right jaw around 1995. I’m having problems with my right ear recently and have slight hearing loss and a feeling of something in my ear, just discovered this by chance and was not aware of a hearing problem but what I paid attention there have been other issues with my ear. Can a Keratocyst effect your ear at all, just wondering? I presume not but just checking especially if it was at the very back of my upper right jaw which is near the ear.

    • Hi Ursula,
      Was very interested in your post querying links with ear problems. I had a Keratocyst removed 2 years ago, but am currently having lots of problems and it looks like it may have recurred. Waiting for a scan to confirm. However, since last December, along with feelings of discomfort and pressure in the same area as the original tumour, I have been getting frequent attacks of vertigo and tinnitus. I feel that there is an association, so it is interesting to read your experiences. Am currently being seen by an Endodontist and am waiting for hospital appointment to come through – I will be very interested to see what my consultant thinks when I discuss my symptoms with him.

  32. I’m a 15 year old female and a few months ago I had a KCOT removed from my sinus cavity. The tumor had started down lower but when it grew it moved up and pushed a wisdom tooth into the sinus cavity as well. I was just wondering what the chance of recurrence was, I didn’t know if the location affected that at all. Also, does anybody know the probability of a wisdom tooth and KCOT being found in the sinus cavity? I’m just curious.

    • My sons first KCOT was found and diagnosed in an identical scenario to yours. We thought it was simply an impacted tooth which had developed into the sinus, but was in fact a massive KCOT which had pushed the tooth into the sinus.
      Obviously every case is different, but the incidents of recurrence are I believe extremely high.
      My son is now 18 and is awaiting surgery in 2 weeks on his fourth KCOT.

  33. Is it safe to supplement with calcium when someone has keratocysts? Also, what other supplements may help? Thank u.

  34. I have an odontogenic keratocyst and have 2 weeks to decide on treatment. Either have a section of my jaw removed and then bone graft or a chemical cauterization. Any recommendation of the best way to go. I am 72 yrs old and do not want to spend my golden years in constant surgeries.

  35. Hi Judy,

    I can’t tell you what to do but can only suggest that you get a second opinion. The OK is a nasty cyst and obviously can eat away any teeth in it’s path. My daughter was 12 when she had teeth, bone, and gum removed. Ten years later she started on the whole replacement procedure. She has implants and until about 3 years ago was doing fine. Now she has a Pyogenic Granuloma on top of the implants. At your age I know the major surgery will be difficult and you will have to wait for the grafting to heal before you can proceed with replacement teeth. Do your research, go to a teaching hospital if you can, and don’t let anyone rush you into making a decision one way or the other.

  36. I cannot advise you on the treatment to have, but my son who is just 18, has had both treatments.

    He has had two lots of surgery then 10 months ago received the chemical cauterisation.
    We have just been for his checkup, and Sadly his keratocyst has returned yet again!!

    He now faces his fourth surgery in 2 years!!
    Once again we are in shock, as we were led to believe that the chemical cauterisation would halt the spread and recurrence of these awful cysts.

    Any suggestions would be welcomed!!

    • Dear Jane,

      In mid 2012, I had to have a molar removed. It was then discovered I have a large Keratocyst in the lower right jaw. The oral surgeon was so concerned, I could not chew any solid food. I was given two (2) options. 1st. have surgery to open the jaw bone and scrap out the Cyst. The Dr. was up front with me saying there is a better than 50% chance this Cyst can come back. The second choice was the Marsupialization. I decided on the 2nd choice and cleaned it 5 to 6 times a day. Dr. said if I didn’t keep it super clean, we were wasting our time………..I read anything I could find on this ‘Beast” . I was 62 yr. old and not prepared to deal with any of this,,,,,,Then, a few weeks later I had a friend in Cincinnati, his 19 yr. old son had a Pilonidal Cyst….Some of the surgery these people go through looks almost mid-evil. He tried a Homeopathy specialist, went with three natural treatments a day, and the Cyst dried up. I wrote this guy and ask about a Keratocyst. He told me there was natural things I could take…Long story cut short,, I bought the stuff, total cost $26.00 . Four little tablets you put under your tongue, 3 x a day…My Keratocyst dried up. The Oral Surgeon was amazed.. NO SURGERY REQUIRED! ! !..There are no guarantees in life, but I am telling you this worked for me. The man I contacted is Mr Ivan Miller and his e-mail is:
      This was the best $26 I ever spent in my life….I am just passing on my experience with my OKC, I hope this helps!!

      • Thank you so much for sharing you experience.
        My sons’ surgeon is very good, but has very little experience of the KOCT. My son trusts him completely, but as a mother, I am open to any suggestions and will certainly email Mr Miller.
        Many thanks

      • I had my first keratocyst removed in 2006. I’m a little upset the periodentist told me it was nothing, just some squishy material with a big long name I couldn’t pronounce. He did not tell me to check back or that it could reoccur. In 2008, I changed dentist and a panoramic xray was done. There it was again, although, the new dentist didn’t mention it, so, I thinking it was nothing let it go. By the way it is between my two lower front teeth. So, after a couple of years, I feel it putting pressure on my teeth and decided to see an oral surgeon. The day before the consult visit, I noticed blood under the skin in that area and figured it had burst. I called the doctor and asked if this was possible and he said yes and we cancelled the appointment. Now, at 63 years old, in 2014, I noticed the two front teeth separating. I made an appointment with a different oral surgeon (because of insurance participation) and had my surgery on 9/18. This doctor said if it comes back again, I will loose my two teeth. He says he cleaned it out the best he could and scraped the jawbone and did bone graft for a cost of just over $4,000. Thankfully my medical insurance covered it. So now, I am revisiting him in January hoping for good news. I am interested in checking into this homeopathy treatment, as I hope to keep my teeth. Thanks for the information. I will check into it.

      • In 2006 I had a odontogenic keratocyst removed from between my two lower front teeth. The periodentist performing the surgery only told me it was nothing, just some squishy material with a big long name I couldn’t pronounce. He did not advise to follow up or tell me it may reoccur. About 2008, I changed dentists and a panoramic xray was taken, there it was again. The new dentist said nothing and I thought, well it wasn’t anything to worry about. A couple of years I felt pressure on my teeth and decided to see an oral surgeon, however the day before the consult appointment, I noticed blood in the area and I phoned the doctor to ask if these cysts popped, was told yes, appointment cancelled. Now, in 2014, at 63 years old, I notice my two lower teeth separating and contacted a different oral surgeon. He advised the same procedure done previously (excising the cyst, scraping the jawbone and bone graft), that if it came back again, I would loose my 2 teeth. The second surgery was done 9/18 costing just over $4,000. Thankfully my health insurance covered it. I will be going back in January 2015 for a check up. Hopefully, the xray shows that it hasn’t come back. However, I don’t feel the surgeon sounded too confident that he was able to get it all especially at the root area.
        I am interested in learning more about this homeopathic treatment.
        Thank you for any information. Ann

  37. Hello to all with OKC,

    In mid 2012, I had to have a molar removed. It was then discovered I have a large Keratocyst in the lower right jaw. The oral surgeon was so concerned, I could not chew any solid food. I was given two (2) options. 1st. have surgery to open the jaw bone and scrap out the Cyst. The Dr. was up front with me saying there is a better than 50% chance this Cyst can come back. The second choice was the Marsupialization. I decided on the 2nd choice and cleaned it 5 to 6 times a day. Dr. said if I didn’t keep it super clean, we were wasting our time………..I read anything I could find on this ‘Beast” . I was 62 yr. old and not prepared to deal with any of this,,,,,,Then, a few weeks later I had a friend in Cincinnati, his 19 yr. old son had a Pilonidal Cyst….Some of the surgery these people go through looks almost mid-evil. He tried a Homeopathy specialist, went with three natural treatments a day, and the Cyst dried up. I wrote this guy and ask about a Keratocyst. He told me there was natural things I could take…Long story cut short,, I bought the stuff, total cost $26.00 . Four little tablets you put under your tongue, 3 x a day…My Keratocyst dried up. The Oral Surgeon was amazed.. NO SURGERY REQUIRED! ! !..There are no guarantees in life, but I am telling you this worked for me. The man I contacted is Mr Ivan Miller and his e-mail is:
    This was the best $26 I ever spent in my life….I am just passing on my experience with my OKC, I hope this helps!!

    • You know you are in trouble when the receptionist wants to see your x-rays at a dentist office (for show n tell. )I have a great dentist and oral surgeon, but this keratocyst thing is not any fun at all.I had mine to reoccur 6 months after the first surgery.The second time, my gum became inflammed in the same area as if something had gotten stuck in my gum and started to drain a large amount of goo. The pan xray didn’t show a cyst, but surgeon went back in the same area this week that the first cyst was in and cleaned out the area again and sent a tissue specimen off to the lab for exam. They had prepared me to have a molar pulled, but decided to try and save the tooth. It is an easier recovery so far. I am wondering if hormonal changes or stress hormones have anything to do with this. I am mid 50s female plus I had an immediate family memer to die the day that I noticed the gum irritation. I don’t think it was just a coincidence. Anyone else noticed stress playing a factor in reoccurrence?

    • Dear Sir,

      Would you please let me know the magic nature thing to treat OKC. How are you doing now? Do you know anything to prevent the OKC reoccurrence? I really appreciate your kind help!!!

      Best wishes,
      Hong Zhou

  38. You know you are in trouble when the receptionist wants to see your x-rays at a dentist office (for show n tell. )I have a great dentist and oral surgeon, but this keratocyst thing is not any fun at all.I had mine to reoccur 6 months after the first surgery.The second time, my gum became inflammed in the same area as if something had gotten stuck in my gum and started to drain a large amount of goo. The pan xray didn’t show a cyst, but surgeon went back in the same area this week that the first cyst was in and cleaned out the area again and sent a tissue specimen off to the lab for exam. They had prepared me to have a molar pulled, but decided to try and save the tooth. It is an easier recovery so far. I am wondering if hormonal changes or stress hormones have anything to do with this. I am mid 50s female plus I had an immediate family memer to die the day that I noticed the gum irritation. I don’t think it was just a coincidence. Anyone else noticed stress playing a factor in reoccurrence?

  39. Yes, I believe it is hormonal. My face blew up with OKC (Golf-Ball sized) when I became pregnant. I knew something was there for years, but it grew and let me know what it was with hormones. Unfortunately had to have surgery at 4 mos. pregnant. 14 years OKC free. Good Luck. Unfortunately we have no control over mother nature.

  40. My husband has been diagnosed with a okc and has been in horrible pain. His surgery was scheduled for 5 weeks from the initial appointment. When we call the office to he is being treated at to tell them of the pain he is in they tell him that this should not be causing any pain and they will not give him anything. Has anyone else exp unbarable pain with their okc? His entire life is on hold because of the pain. This is his second cyst. The first one was removed 4 years ago and now he is due to have surgery next week at University of MD. They are going to break his jaw, remove teeth, remove cyst, take fat from his cheek to fill in the hole where the cyst is? Anyone had any of this?

    • Dianne read my reply to Jane with the 17 yr.old son….I completly understand them saying we should not be hurting from the Cysts..Mine was eventually a OK Tumor..Yes they are very painful so I bet if the receptionist or our surgeons actually ever had one they would understand the Pain but unfourtantly we get stuck with this pain and it just seems cruel for them to say we shouldn’t be hurting….My surgeons office said the same thing to me…So I’m being referred to one that is more compassionate to his patients..I will keep you guys in my prayers….

    • I have a similar experience. My tumor was found on accident and removed December 2012. I was in unbearable pain for almost 2 years. The tumor did not show on any imagining. No MRI, CT scans, or x-Rays. It was so big it was pushing my gum out and the oral surgeon said I had an abscess under my gum. He was wrong. Pain was better after the surgery but I was left with painful neuropathy. The oral surgeon to this day claims that a KOT does not cause pain. I’m now having unbearable pain again since April and since yet again nothing is showing on imaging I’m getting no help.

  41. My husband has been diagnosed with a okc and has been in horrible pain. His surgery was scheduled for 5 weeks from the initial appointment. When we call the office he is being treated at to tell them of the pain he is in they tell him that this should not be causing any pain and they will not give him anything. Has anyone else exp unbarable pain with their okc? His entire life is on hold because of the pain. This is his second cyst. The first one was removed 4 years ago and now he is due to have surgery next week at University of MD. They are going to break his jaw, remove teeth, remove cyst, take fat from his cheek to fill in the hole where the cyst is? Anyone had any of this?

    • My daughter had something similar but they didn’t break the jaw. She had bone harvested from her hip. I don’t remember any pain though. I would certainly find out where it might be coming from before he had any surgery.

  42. Dianne I’m still waiting to been seen for consult at university of md my doctor that removed my referred me there for this reoccurance and I’m not understanding why…… I’m always in pain I just take Motrin and it helps a little my consultation is not until October smh this is insane how they don’t take this serious

    • I am so sorry to hear this. What Doctor are you waiting to see? We were able to get our appointment within 3 weeks for the consult with Dr. Lubek. Maybe if you ask for another doctor they can get you in sooner. It really upsets me that they just dismiss the pain as if we are crazy. I wish I had somewhere else to go because this is our second go around with this with the same Doctor and it has not been a pleasant experience either time.

  43. I had one of these cysts removed in April 2012 (I am now 57) and, shortly after, moved to live in Spain.
    My Oral Surgeon told me that it was important to get some regular x-rays done in order to make sure that the jaw bone was growing back properly but it has been difficult here and, so far, I have only had one x-ray taken back in November 2012 which was OK.

    I am concerned, because the cyst that was removed was very large and had just reached my eye socket.
    I am getting symptoms with my eye watering a lot lately and am worried that it could be that the cyst has returned and has reached that area of my eye again.

    Is this possible? And should I get it checked out again? I am not in any pain.

    • Pauline, it is very possible it will recur. You should get annual xrays to check. Most of the time, these cysts do not come with pain.
      Best of luck.

  44. my heart goes out to everyone who has dealt with or is dealing with these cystic tumors wheither It is sporadic or gorlin syndrome which is genetic (lacking the patch1 tumor suppessor gene) which regulates SHH cellular pathway keeping it in normal signaling ranges when over signaling it is the main cause of these cysts plus 12 other contributing factors I had decompression(2010) and take compounds to target the 13 submolecular,molecular and cellular problems that are involved with OKCs so far so good they had wanted to remove teeth take bone from my hip I just opted for the decompression and started taking the substances and in 10 months the cyst was gone and the bone regenerated and everything is still normal it pays to do yr research

    • I’ve just been diagnosed with 3 OKC’s, likely Gorlins Syndrome. I’d really appreciate hearing more about these options to surgery you discovered and any research, etc you can point me towards. Thank you!

      • sorry I just saw yr request hope u are doing well// I take daily 3 SSH inhibitors forskolin 100 mg / DIM(diinodolymethane) 50 mg/vit D3 1000 IUs// cyclin D1 and BCL-2 blockers ginger powder 1/8 teaspoon/ theoflavin extract 350 mg //and vit k1 100 mcg after I had decompression in 2010 i started taking this regiment and within fifteen minutes after taking the ginger i could feel it in the jaw area 10 months later the large hole had filled in completely and 4 and a half yrs later all is still normal i put this together after a lot of research hope this helps everyone

    • Hi Chris,

      I would like to ask what kind of OKC you have and do you have gorlin syndrome? Since you have decompression plus taking compounds, so your cyst is gone. DO YOU STILL DOING THE DECOMPRESSSION AND TAKING COMPOUNDS NOW? I really like to know if people only has OKC, what kind of compound will work WITHOUT DECOMPRESSION/SUGERY? do you think that the Okc will be gone by taking the compound ONLY?
      Thank you very much for your kind help !!!!!

      Best wishes,

      • hey there JianKang/// I had sporadic OKCT there is a defect in the lamina of the bone in the wisdom tooth area so I am prone to this I don’t have gorlin but it is similar in the process I had decompression june 15 2010 at U of F dental school they crammed the tube in which was painful it could have been done without a oversized tube so I had them remove it after 2 wks but I kept the hole open for months by irrigating it with a plastic syringe(with perdex solution) everyday for as long as I could til the bone grew in(about 11 months) I started taking the compounds a month or so after the decompression and I still take a maintenance amount to prevent recurrence I am not sure if the compounds themselves can eradicate a formed OKCT but I would try and get it drained and take the compounds to assist and to then prevent any recurrence hopes this helps

    • Hi, this is interesting. Im heading towards surgery for cystic tumour number two. Likely I will lose 4 teeth. Can you please name the compounds and where you got them? I’d like to look into this. TY.

      • see January 6th 2015 entry //ginger powder in grocery stores others online also(form of vit e ) toco trienols and ceramides (from wheat) I could feel them affecting the cyst area ginger and theaflavins I could feel it 10 minutes after ingesting 10 months later the cyst was gone and bone regenerated 5 yrs now still normal

    • Hi Chris I’m having decompression on a cyst the size of a golf ball on 30th June 2016. I had surgery last year but it wasn’t successful so I’m going in again.
      I’m not to sure what to expect, is there a lot of swelling/pain afterwards? I’ve put in for 3 days off work but not sure if that will be enough.
      Kind regards Cherylanne..

  45. Dr. Joseph Hellman University of Michigan Oral and Maxillo Facial Surgeon. I had an OK in my R upper Maxilla. Was able to have golf ball sized OKC removed with NO scars. I know moving quickly is important in this matter.

  46. Hello. I also have a KCOT. I am currently being treated for it with a decompression tube, by Dr. George Obeid, who since 1994 has been Chairman and Director of residency training for the Department of Oral and Maxillofacial Surgery at MedStar Washington Hospital Center, Washington, D.C. He is excellent.

  47. Does anyone know the nature way to treat OKC and how to prevent the reoccurance? Thank you very much for your help!!

  48. I don’t yet but I have been researching these OKC and OK Tumors for a while now…I do know it is Genetic..

  49. When I wrote back in the spring that my OKC was gone by taking a Natural Homeopathic pill, I received what was a nasty e-mail saying, “are you telling people not to trust their Drs.”? NO, I was not saying that at all.
    I just pointed out, I had a very large Keratocyst, from the Rt. Jaw hinge to the front teeth. I was on soft foods for months. So, I read and read everything I could find on these beast. I went with a Marsuplization and the Natural Homeopathic treatment and my Oral Surgeon was amazed my Cyst got smaller & smaller and dried up. THUS< NO SURGERY….I AM NOT saying this will work for you, But it did for me, and to the person with the nasty e-mail, it's now 1 year later and I just had a new total x-ray, & no cyst. I have paid $26 twice for this Homeopathic pills. I stopped just a few months ago. The man I e-mailed for this is:
    His name is Miller and all I am saying, his advise worked for me. Whatever course of treatment you decide on, I pray everything goes your way. I didn't know what a Keratocyst was until I was 62 yrs. old. To read where young people, even teenagers, having to deal with these cyst, is heartbreaking.

    • Hi Douglas,

      It is really nice that you didn’t need surgery and the cyst is gone.
      I emailed Miller about the Natural Homeopathic pill, but he didn’t reply. Would you please let me know how to contact him? Does he have a clinic? by the way what kind of pills you took? Thank you very much for kind help!!!!!!!!!!!

      Best wishes,
      Jian Kang

  50. To Jian King;
    Thanks for writing. The e-mail I provided is the only contact I have. I still have a copy of the e-mail he sent me which list the homeopathic tablets and a juice you can make at home…Again, to all who have written me, all I can say is this worked for me. I would talk to your Oral Surgeon first, but this is the information I received from Mr. Miller which I followed to the letter…………………………………………………………………………………………………………………………………………………

    Although I started studying medicine to cure the pilonidal cyst I had, I am familiar with many diseases and conditions. Keratocyst is considerably easier to cure than pilonidal cyst and way smaller.

    Take 4 tablets of arsenicum album 30c in the morning, 4 tablets of calcarea carbonica 30c in the afternoon and 4 tablets of phosphorus 1M in the night.

    You can get them from my site:

    Doug, you can make the following juice while waiting for the pills:::

    -1 beet root
    -1 carrot
    -1 celery stack

    Add 50% water and liquefy.

    Drink part of the juice and save another part to rinse your mouth with it during 5 minutes. NEVER EVER drink the juice after having rinsed your mouth with it, because it becomes contaminated.

    You can do the juice once a day for 10 days.

  51. Hi Douglas,

    I really appreciate your kindness for posting all the info here. I did some research and found that the pills you gave are all Homeopathic pills. However, they all seem not related to the KOC or any cysts. I am just wondering the reason that Mr.Miller suggested you to take the 3 pills. HOW MANY DAYS you need to take them for you to get the cyst gone? Since you said the cyst was gone after you took the pills, why you need take them again this year? So do you think the patient should reatake every year or how often if the pills do work for her/him?

    Thank you very much for your time and kindness and help!!!

    Best wishes,
    Jian Kang

    • Dear Jian Kang,

      I have no answer as to why he suggested these three pills. All I know is I took them and my Oral Surgeon was very impressed with the results. I also was a fanatic in keeping the Marsuplization clean ( 6 times a day). The Surgeon felt it would be wise to take another round of the Homeopathic pills. The pills took approximately 40 days to complete. No side effect at all. To day the Cyst is still gone, but the Surgeon has keep the Marsuplization open as a preventative. This is the best answer I can give you. Good Luck & GOD BLESS ! ! !

      • Hi Douglas,
        Thank you so much for your reply!!! I really appreciate your time and help!!!
        Now I am sure you not only took the pills but also have Marsuplization open. So I AM NOT SURE THE PILLS ALONE can do the work. In addition the location of the cyst may also affect the results of the pills treatment????
        In fact, I contact the web
        but no reply, it make me not secure why the owner didn’t reply. The staff of our local homepathic store told me that the PHOSPHORUS 1M is very concentrated and should take less offten. So I am very worried about this. but at least you didn’t get any side effects for taking all the pillls for over one month. I really like to find nature way to treat the cyst. Thank you very much for your kind help!!

        Best wishes,
        Jian Kang

        • Hello, my name is Simona and I also have the cyst , I am going to have the marsupialization done soon and I want to know if you did take those homeopathic pills and how are you feeling, how everything went with your cyst?? Either way I hope you are OK
          Thank you !

  52. Hi i am having surgery on monday for my okc. Its in the lower right jaw. My bone seems fine had no orders from dr not to eat normally. Its 5cm in size and no pain. Had biopsy a while ago. What is the recovery time? When will i be able to eat properly again?

  53. So my consult is finally here in 4 days and I’m out of Motrin and antibiotics and feel horrible. It’s my second time so there’s no where for the cyst to drain and I feel it’s behind my ear and neck. I feel sick. Other than pain how can you tell its infected? What other symptoms does the cysts cause for you? I feel warm and don’t have a fever. My plan is to call for a script but my appointment is for a referred doctor and they probably won’t do it? I’m getting nervous. What’s the worst case scenarios on these things? My first was unnoticeable until I had a pano for a wisdom tooth extraction, but this one is sticking out the side of my jaw and has become visible just by looking at me. I use to have to point it out now it’s obvious.

  54. I had a KCOT successfully removed recently, and my oral surgeon scheduled a followup surgery in a few weeks to apply the Cornoy chemical. His thinking is that it’s impossible to know for sure if the entire KCOT was removed or if microscopic bits still remain. I’m told the chemical is an old-school method but a good one for ridding any residual tumor cells. I’ll also need followup xrays every 6 months for the next 5 years.
    My questions are about this chemical. Is it safe? Are there any known side effects? does this course of action make sense?

    • Hi Mark –

      Carny’s solution is a chemical that is used to “fix” (kill) tissue that it comes into contact with. It has been used for a long time and has a good track record when it comes to resolving the odontogenic keratocyst.

      While nothing is 100% safe, due to it’s good track record, I believe that the benefits outweigh the risk. The main risk that I’m aware of is what makes this chemical effective: it kills tissue that it comes into contact with. For example, if your tumor was on top of the main nerve in your jaw, then the application of Carnoy’s solution could cause nerve damage. The good news is that your oral surgeon is very mindful of the anatomy and wants to completely remove the tumor while causing the least amount of harm as possible. Here’s a paper that describes Carnoy’s Solution being used in the treatment of an odontogenic keratocyst:

      I hope that helps – Good luck!

  55. Mark, I know where you’re coming from, but I would recommend it. My son (now 21) had a large KCOT in maxillary sinus removed a year ago after 16 months of marsupialisation. The doctor applied Carnoy’s solution at the time of surgery. I think it was effective because the surgery was much more extensive than anticipated – tumor had got deeply into bone, so difficult to remove intact (which is important to reduce recurrence risk). I think the Carnoy’s solution is put onto gauze and placed in the cavity for maximum of 3 minutes. Any longer could cause nerve damage. Like you, I was anxious about it, but I would recommend it now. Almost all feeling has returned, so very minimal nerve damage – if any. He has to have 6-monthly scans for 10 years. Thankfully, his recent 12 month scan showed no suspicion of a recurrence!
    (FYI, I think the Carnoy’s is very strong, because a bit went onto his lip. They cleaned it off immediately, but that patch blistered and festered – need antibiotic cream to heal it. So obviously would be effective at destroying any residual tumor cells left inside)
    This site is very good. People here know what you’re going through, when others might not understand. Keep us updated.

  56. crunch time

    My surgery is on February 3rd and they opted to do a reconstruction of my jaw with a bone graft from my leg…. i am livid …. scared very very scared…. any advice? has anyone had the bone grafting? Also after my biopsy i still have an opening in my jaw that seems to get food in it and sometime clots of blood??? my face has gone down to normal almost like theres no more cyst after a simple biopsy procedure. Im totally confused here

  57. Lennea,
    You might want to get a second opinion. I know a lot of people have bone grafting with this surgery however….get a second opinion. Sounds like you have some time. Call a teaching hospital and ask for the doctor who is head of oral and maxillo facial surgery. See if she/he will see you. Teaching hospitals love these cases because they are so rare. I saw several different doctors before having mine removed it was golf ball sized, only internal scars. If you can’t get through a receptionist ask to speak with a resident. Tell the resident your case and try to get in. Also you may have to ask insurance co. for coverage. Good luck. You can do it. Yes, food in the hole, stinky, normal…ugggh so sorry.

    • tuesday is the big day. any advice? any blog or video log links on patients testimonies ? I’m having my jaw removed and leg bone grafted …..

      • wow I am scared for u/ they had wanted to do similar on me 5 yrs ago this june I found a surgeon that tried decompression kept it open as long as I could it shrunk down and I started taking a very advanced oral program see my older entries and in 10 and a half months the cyst was gone and the bone regenerated if u want I can send u or anyone else the before and after xrays /mine was huge not much bone was left so I would be really careful / if u feel this is the way for u I pray it will be alright

        • I have a son who is 11 year old turning 12 on 3-26-15. From the time his lower teeth came in around 7 years of age he has comment that they are wiggly – not knowing this could mean a possible odontogenic keracyst. They want to do radical surgery and remove 5 teeth, cys &, bone and do grafts , but since this is so rare a condition this oral surgeon has only seen 1 other patient a 4 year old with this condition that came to him 2 few months ago. I would be interested in any information you can send me of what you did to heal and the xrays so I can compare what we are dealing with. What was your oral program and how long did you do the decompression. So glad this site is here. Any info and insite would be appreciated. Cheri

          • chris// sorry to hear about yr son especially being so young and anything u do(or have done) will affect him for life what i kept running into with most oral surgeons is they wanted to do invasive damaging surgery I wanted to try decompression I found one that did it and didn’t have to lose any teeth or bone if u look back at my earlier entries it gives the details of what I did: aug 8 th 2014/ jan 6th 2015/ feb 10th 2015/I had a radicular cyst under a tooth started from an abscess I had that decompressed 2 yrs ago when I had the okct decompressed 5 yrs ago in june they crammed oversized tube in it was very painful I made them remove it after 2 wks they wanted it in for a few months but I kept it open and irrigated with a plastic syringe so it worked out anyway the doctor who did the same procedure on the radicular cyst placed a smaller tube in snug there was no discomfort so who does it and their technic is important I would consider consulting a qualified oral surgery dept that does decompression/wishing u and him the best

            • Hi Greta I’m having surgery again on the 30th of June but due to the size of the cyst they have to decompress it otherwise they could fracture my jaw if they try to take it out as a whole. Then I will have regular X-rays and hopefully when it’s small enough I’ll have more surgery to have it removed. Did your daughter have decompression first? And if so was there swelling afterwards.
              I’m Not sure what to expect but starting to get a bit nervous about it..

  58. Dear all,

    Does anyone know Dr.Robert Marx in Florida? How is his treatment for the KCOT? Does anyone know the best Doctor to treat the KCOT WITHOUT RECURRENCE. Because the carnoy solution is modified now without chloroform(since 2008??) the recurrence rate is higher. Thank you very much for the info and help!!!

    Best wishes,
    Jian Kang

    • My suggestion is to go to a teaching hospital. The dental schools have the latest techniques and they are so much less expensive than private oral surgeons. Check The University of Miami.

  59. Im on my 15th day in the hospital and i wish i had tried other methods im not in pain the bone graft and transfer went great but i had an infection set in the jaw now im here hooked up tot ubes for over two weeks….: the worst twi weeks of my life

    • Dear Lennea,

      First, I ask forgiveness for not writing you sooner. I pray everyday for the people on this site. I never heard of the OKC until I got mine at age 62. It was then I read everything I could find on this monster. The hardest to read is the situations like yours with the bone grafts and the young kids that have to endure this.
      So, two months since you were in the hospital, how is it going? Prayers that thinks age going better for you.
      Again, I’m sorry for the delay in writing back.

  60. Hi guys my name is Kaustubh Dandekar. I am from INDIA. I’m 18 years old and i’m suffering form this Keratocystic odontogenic tumor(KCOT). It developed in my left upper jaw. My doctor is saying that it can be treated only by surgery but i am little nervous for it. So is there anyways to treat it with the medication. If someone know any medication for it you can contact on this number 7276374791. Thanks for reading it.

    • Hi Kaustubh,

      Have you got any info regarding the medication treatment for the cyst?
      Thank you very much!!

      Best wishes,

  61. I had three removed in my late twenties. Bottom left and right jaw and upper left into the eye socket. Cost $10,000 and was not covered by insurance. Only sign I had was it was crushing my nerve in bottom right molar and causing an earache that became an extreme ringing one night. I went to the dentist and was referred to an Oral Surgeon who removed them the next day. Could not eat solids for a year. To this day he can’t tell me what caused it and why. Only advice I can suggest is get good dental insurance with regular cleanings and most of all panoramic X-rays. Hasn’t come back in fifteen years but surgeon says it still may.

    • Hi there,

      It is really nice that you didn’t have any recurrence. can i ask who is your oral surgeon and what kind of surgery you had? thank you very much!!

      best wishes,

  62. Hi everyone, Im having what my doctor has described of a large keratocyst removed from my Maxillary sinus on May 22nd. Its been caused he thinks by a tooth which had erupted upwards into my sinus area rather than downwards where it should have been. He’s saying he needs to go in through the top of my gum and through the roof of my mouth to make sure everything is removed.

    I was wondering if anyone has been through this and what the recovery time looks like, any tips or tricks post op ? My wife is pregnant with our first and its due a few weeks after the operation so I’m kinda nervous about the whole thing.

    • Hi Nick,

      My daughter had the same thing when she was 12. Please make sure you have a lot of faith in your doctor. Hopefully he/she is an Oral Maxillofacial surgeon and has done this surgery many many times before. If they can’t get the entire cyst out(which does happen, and it did in my daughter’s case), you are looking at more surgeries to come. You need to ask questions. Email me back any time.

  63. I had the exact same thing. I had a wisdom tooth in my sinus as well as the tumor. They removed both at the same time. You will be pretty swollen and some for about a week but after that it’s mostly just aches and pains that can be controlled by the pain meds. Don’t be surprised if your eye swells shut, mine did for a day because of the sinus surgery.

  64. Hi Nick,

    I just tried to post a comment. Don’t think it worked. Anyway, make sure you ask your surgeon many questions. There are doctors out there that will tell you they have done this surgery many times with very positive results. I will tell you that these OKC’s are difficult to clean out and the recurrence rate is very high. If it works and in your case I certainly hope so, I believe your recovery time will be minimal(that is assuming the doctor doesn’t run into problems.). Please email me any time.

  65. Hi everyone and many thanks for taking the time to comment, it really helps !

    My doctor says that because of the area he has to operate its a possibility that i may lose sensation on the right hand side of my face which could be permanent. I guess the fact that I’ve never heard someone use the term “permanent” with any other procedure I’ve had before might have just worried me a bit more. Im guessing thats just a “possibility” and that he has to mention it.

    That said he is a very good surgeon, and you’re also right that i need to ask more questions (I’m not historically good at thinking things up on the spot) he helped with my wisdom teeth a while ago and as such he’s kind my “go to face guy”.

    Ive heard they are difficult to shift though but fingers crossed I’m forever the optimist !

    Specifically speaking post surgery best foods to eat ? last time I had surgery i lost like a stone in three days !! can’t afford that again this time so it might help to get some stocks in preparation for my return home.

    Sorry if it seems a little arbitrary but I’m trying to ease the burden on my heavily pregnant (and not amused) wife.

    • Hi Nick,

      My daughter had multiple surgeries, massive bone and teeth loss, bone harvested from her hip, implants and a permanent upper partial(the first of which was shoddy construction.). She has now been fighting a Pyogenic Granuloma above the partial. This has all been going on as I said since she was 12 and will turn 35 in July. With all the surgeries and procedures, not once did any of the surgeons mention losing sensation on any side of her face albeit permanent or temporary. I understand they are mitigating any complications by telling you up front what you might experience. Got it, just like taking a new drug with side effects. Not everyone will have them. Have you had a second opinion? Can’t hurt.

  66. Nick,
    Ask your doctor about facial degloving where they go up in front of your teeth into your maxillary sinus. I had that procedure they were able to remove the entire cyst, use Carnoy solution, and I have not had a recurrence in 15 years. My sister is also very large golf ball sized. The recovery was long and it took a couple years to really look like myself. Plan on being in bed for a couple of weeks after the surgery, do It while your wife is pregnant that way she won’t have to take care of two people after the new baby comes. Funny thing I had the surgery when I was six months pregnant!!! I have no visible scars face is ever so slightly different. Sometimes I even feel my facial nerves regenerating. My doctor said there’s a risk of losing teeth but I didn’t lose any teeth. Good luck with all of this. Its a tough little road but you can do it

  67. Hi Greta, your poor daughter 🙁 I hope things get better for her soon and thank you again for sharing your experiences. When the surgeon mentioned the loss in sensation he was quite specific about the nerve involved. He mentioned that he had done many of these before and mentioned that its presence may have been there for some time, but as you say if your daughter has been through all of that , then hopefully it’s just a cautionary side effect rather than a foregone conclusion.

  68. Sorry im having some problems posting hence the fractured responses but i was wondering lemonade if you had experienced this loss of sensation following your procedure. What you’ve mentioned is quite similar to my guys proposed course of action

  69. Hi Nick, yes I did lose some sensation but it’s slowly come back over the years and there is no muscular involvement you can’t tell by looking at me as all my muscles working everything in my smiles even.One thing I have noticed as I’ve aged is one side of my face is ever so slightly lower than the other and I think it’s because they pulled that side of my face up so far and their scar tissue is kind of keeping everything in place, and the other side is aging normally. What I would tell my surgeon now is pull the other side up just as high as that side with the cyst. That way, maybe the scar tissue on both sides will be the same and that way you stay more symmetrical. The difference of sides of my face is so small, and you can barely tell a difference.

  70. Hi, my husband had a KCOT when he was 21yrs old. It returned twice in the exact same spot. He has been fine since. However, I am concerned about Gorlins Syndrome. He does not have any other signs or characteristics of Gorlins but did have a KCOT tumour. Does anyone know the likelihood of having Gorlins? Thank you.

  71. First, I want to say this is the most comprehensive article about OKCT I have seen on the internet. Thank you! I had my wisdom teeth removed at 25 in 2007 because of an infection. After the surgery I kept getting horrible sinus/ respiratory infections so my doctor removed my tonsils in 2008. In 2009 I realized that there was a hole in my upper left gums where the wisdom tooth was extracted. I went to the dentist who extracted my wisdom teeth and he put a couple of stiches in it and gave me antibiotics for a “cyst”. I sneezed and ripped the stiches a few days later. In 2010 went to another oral surgeon who opened up the area and removed the “cyst”. 2011 I had another bad sinus infection and found another cyst, this time it moved into my sinus cavity nearly reaching my eye so the surgeon removed it through my nose. 2012 still miserable I had the cyst removed again through my nose. 2013 no problems! 2014 I was at work and I felt the worst jaw pain in my LIFE. It felt like all my teeth on my upper left were being pushed out of my mouth. I went to my oral surgeon, this time he sent it to the lab and discovered it was OKCT. I get x-rays every 6 months now, I don’t care what it cost. What baffles me is that there is not a lot of education about OKCT. Another thing that irritates me is that both my insurance and my doctors argued over what they would or would not cover because one side of that tiny little membrane between my sinus and my jaw is medical and the other side is dental.

    • I am so sorry for you. If you read my posts you will see what my daughter has been going through. First and foremost I would find the best teaching hospital around and contact the head of the dental school. You deserve it after everything you have been through. Health insurance is amazing. They will pay to have everything taken out, but won’t pay to have things put back in. It’s like someone having a leg removed and not paying for a new prosthetic. We have gone through it. Best of luck.

  72. Greta,
    Thank you for the advice. I am praying it doesn’t come back. Your daughter went through a lot. She’s lucky to have you. What you said is exactly right about the insurance.

  73. Hi I’m a 43 year old female who recently had my odontogenic Kerotcyst removed. Monday, May 18th to be exact! It was an incidental finding on a CAT scan I had done. I had no symptoms whatsoever but my doctor suggested I see an oral surgeon who recommended it be removed. It was in my upper jaw area and pushing towards my sinus. I’ll start with the surgery itself.
    Surgery was at NYU hospital in NYC and performed by Dr. Schmidt and Dr. Persky. I think I had the best possible surgeons ever! They are both professors in their field with a ton of experience and were accompanied by 2 wonderful residents! Dr. Shmidt took care of the OKC and Dr. Persky took care of a Thornwaltz Cysts. I think I was under for about 2 and half hours.

    Recovery: Woke up and felt discomfort and some pain. Was given some pain meds which took the edge off. I went home the same day. Took my pain meds every 4 to 6 hours. I was given Tylenol with Codeine and some antibiotic to take for 3 days. There was pain but it wasn’t excruciating pain. LOTS of swelling. Icing HELPS A LOT. I iced for 20 mins at a time. I also slept a lot. Best to sleep in an almost sitting position. When I laid on my back I felt a drip behind my throat and it was uncomfortable. Propping yourself up, although uncomfortable for sleeping, helps with the swelling as well. The first day I was on a fruit smoothie diet, apple sauce and yogurt. Second day I graduated to mashed potatoes. The surgery was on the left side so the left side of my lip was basically ripped from having my mouth opened so wide. I used bacitracin to help with the healing. After eating or drinking ANYTHING I rinsed my mouth with warm salt water followed by a hydrogen peroxide and water mix. Surgery was on a Monday and I returned to work a week later on a Tuesday (Thank goodness for Memorial Day) it was just the right amount of time for the swelling to go down. The first 4 days the left side of my face was very swollen and all my neighbors asked what was wrong so I had to explain it every time. ICE ICE ICE. Helps with the discomfort and pain. I’m back at work now and going for my follow up at 2pm. There are stitches in my mouth which i cannot see but if I run my tongue through the top of my gum (which I can now do) I feel them. Still can’t open my mouth wide but I am eating solids. I was able to eat some brisket yesterday that was cooked for 8 hours on a slow cooker so it was basically shredded =). I have pictures of my swollen face I can share if the commentator of this post allows. I can also ask for a copy of my xray which I will probably get today that I can share as well. Any questions please feel free to ask. There isn’t a lot of information out there about this so it was nice to find this webpage and see that there are others who have had this.

    P.S. I was told it has a high recurrence rate and may come back in 5 to 10 years. I hope not.

  74. Seeing as though commenting is still open I thought i’d add my experience so far. Im in the UK. In 2012 I went to my dentist and he did a routine x-ray. He found a black spot in my jaw and so refered me to hospital. After a couple of weeks of tests and x-rays and waiting they came to the conclusion it was a cyst so would need to operate. Bear in mind I was in no pain or anything. I had the op under general anesthetic. I healed all nicely and was meant to go back every 6 months for an x-ray but moved address and forgot.
    Anyway come 2015 and I had pain in my jaw and went to my dentist. He no longer had an x-ray machine so refered me to hospital again. Over the next couple of weeks waiting my face began to swell at the bottom. I got my appointment and they did a scan and said it looked like it had come back. They got me in for a procedure under local anaesthetic whete they scrapped it out and stitched me back up. They are arranging to have me back in 6 weeks to see if im ok and to give me the results of the biopsy on what they took out as they didnt do one last time. They said it is either scar tissue/ granulation tissue that has built up where the cyst was last time or it is a keratocyst. Thank you for the information as I had trouble finding any online about this. Im hoping thats not what I have but i’ll have to wait and see. I’ve never had any wisdom teeth as of yet and luckily both times the cyst has only been quite small.

  75. Hi, I’m 35 years old and 16 weeks pregnant and have known about a “cyst” in my jaw since about 6 weeks in. I’ve seen 2 oral surgeons who are on completely different pages. 1st OS said wait out 1st trimester and then do surgery as cyst is about 6-7cm. since he isnt in my “network” he reffered me to OS 2. OS 2 immediately starts in with “worst case scenarios” and says he wont do anything til after baby is born. My main concern is that pregnancy will speed up growth as this thing presently occupies from my premolar to almost the end of the mandible on the left side. luckily I’m in MN with University of MN Minneapolis within 6 hours if worst-case were to happen. but why would one OS be good to go and the other jump to the complete other end of the board? talk about “how to freak an expectant mother 101.”

  76. Lauren, the sooner you remove it the better. IF it is OKCT you need to get it out now. If it’s in your sinus or in your jaw, you may not be able to get the nutrients to help care for your baby and yourself. Read some of the stories above…..
    1 get diagnosed first
    2 find out who is the professional in your area and get advice
    3 speak to your OBGYN about how it would impact your child
    4 make an educated decision

    Good Luck and God Bless

  77. Hi Lauren
    I was 16 weeks pregnant when I had my OKC removed. It was a four + hour surgery and the doctor recommended removing it immediately. I’m really glad I had mine taken out while I was pregnant because the recovery is kind of intense and I can’t imagine taking care of a baby and me going through that surgery. Go see a doctor at the University and get the recommendation. My doctors response when I had my OKC was, “What is the baby without a mother?” Long story short I had surgery, morphine, codeine, multiple CAT scans, x-rays, antibiotics. That baby is now 15 years old and top of his class genius level verbal IQ. I was convinced he was going to come out with two heads in glowing. The University Hospital arranged for OB/GYN to be available after surgery-to check for baby’s heart tones. From what I understood, baby was it a good developmental place to have surgery.

  78. Some oral surgeons are not going to be truly familiar with an OKC so opinions can vary greatly from doctor to doctor. Keep in mind every OKC is different as is recovery time. I waited 9 months between diagnosis and removal. I had my OKC for a very long time so who knows if a few months will even make a difference. Talk to a professional as well as your Ob Gyn.
    Feel free to email me if you ever want to swap stories. I have spoken to many people from this site! 🙂

  79. Hi guys I’m 45 and from Sydney Australia,
    I went for a routine dental checkup x-Ray September 2014, I received a letter to go back in December 2014 to see a Maxillofacial surgeon, he asked me how long I’d had the lesion/ fistula on my gum, I told him I’d had it for a very long time. He told me that I had a what he thought was a cyst the size of a golf ball and it was starting to grow into my sinus cavity. I Went into panic mode and googled everything which is not a good thing to do.
    I went back to see an endontitist early this year as I was told root canal would have to be done first because two of my teeth were dead possibly from teeth trauma many years before, I had 3 treatments of root canal before the endontitist decided on surgery. I had the surgery July this year but the specialist didn’t get it out in one piece because it burst so he was picking the sac out.
    I went back 4 weeks after the surgery and was told that the pathology didn’t define what type if cyst it was and it didn’t rule out a keratocyst.
    I told the specialist that I had yukky liquid draining out of the fistula again so he stuck something in the drainage hole and took an X-ray, it shows that there is something still there and it is destroying the bone around it so now I’m being referred back to the max fax guys who I think should have done the surgery in the first place.
    So for me it’s a waiting game, I’ve gone to emergency at the hospital and complained about bad sinus but because there’s no swelling they say it’s not an emergency.
    Did anyone else have the fistula/drainage?

  80. Please find a dental teaching hospital. I am sure in Sydney there is a large dental school attached to the university. They train with the newest procedures available. My daughter was 12 when they found the first OKC and the surgeon didn’t get it all out. She ended up having bone, teeth, and gum removed. She is now 35 and until two years ago, she was still having major dental work done. She now has an abscess that is on the gum above her implants. They have tried laser, chemicals, and steroid shots. For right now it has calmed down and not grown any bigger. We are hopeful it will dry up and go away. I am sure your surgeon is top knotch but I would go to the dental school for a second opinion if you haven’t done that already. Best of luck.

    • Thanks Greta for your reply,
      I have been having treatment through westmead dental hospital which is a really big and well known place here in Sydney. The thing is there are thousands on the waiting list. The specialist told me that he would refer me straight away but I needed to follow up so I will call them every week.
      I just want it out and it’s scaring me the damage that it’s causing.
      I’m sorry to hear about your daughter, to have it at such a young age and still be having problems so many years later..
      Fingers crossed it doesn’t return..

    • Hi Greta I’m having surgery again on the 30th of June but due to the size of the cyst they have to decompress it otherwise they could fracture my jaw if they try to take it out as a whole. Then I will have regular X-rays and hopefully when it’s small enough I’ll have more surgery to have it removed. Did your daughter have decompression first? And if so was there swelling afterwards.
      I’m Not sure what to expect but starting to get a bit nervous about it..

  81. had enucleation of OKC a week ago and doing fairly well but some discomfort and tingling/numbness radiating from lower jaw up side of face. just wondered how long I should expect these symptoms to last?
    also read (I am a nurse so very curious!) that pro inflammatory cytokynes IL1 and IL6 have been detected in histological analysis of these tumours and wondered as I work with autoimmune diseases whether there are any links with autoimmune disease and OKC??

    • Hi Michelle,

      I just wanted to follow up on how you’re doing. I had my second surgery on a reoccurring OKC. The enucleation was done a month ago and I’m still in the process of recovering. They had to remove two cysts in my lower right mandible so my jaw mobility and diet has been limited. I’m just wondering if you had experienced any problems with foul mouth odors? I’m a month in and my mouth still smells like a dump yard. I brush my teeth after every meal, rinse with salt water and floss with a waterpik but nothing seems to help….. I’m just wondering how long this will persist.

  82. I am currently in hospital after having my second odontogenic karatocyst remover from my top jaw. The first one i had was in 2013 and it grew so big it took over my right sinus, and broke through my top gum before i had any symptoms. I have had a lefort 1 osteotomy on my maxilla this time, which means they cut my top jaw completely off at the level of my nasal cavity. Its very invasive, and the pain involved is excruciating. I hope no one has to go through this. My keratocyst had taken over my right sinus again and was nearly the size of a golf ball. I had been having yearly scans and it had grown this large since my last scan. The surgeon says it may possibly come back a third time. Fingers crossed this is the end of it!!

  83. Hi i noticed sth weird from last year i do see some keratin deposits on my gum especially close the area my wisdom teeth removed. I had removed impacted wisdom teeth by surgery like 10 yrs ago and i had checkup sessions with dr almost once a yr last summer he didnt take full jaw image. This month i went to checkup and to my surprise inside the gum where one one of my wisdom tooth peviously located there were a circular very bright sth like a very small pearl with some very small maybe dark point inside. If i had looked image from far i would think of a new tooth coming out! Dr told me it is a cyst because of wisdom tooth but what the hell i am damn sure that i took them out perfectly and at least from last two yrs my radiography was always correct. I do have the feeling that sometimes i do teeth grinding while slept and have had bad taste in my mouth mostly because of acid reflux. Could such thing be an important issue? What type of cyst it could be? I never heard of cysts really in mouth gives me scary feeling. Should i see another dr? Im damn sure this thing has grown there during last year and i dont feel any pain.

  84. I’m currently 16 and I have to go through my first KCOT treatment. I’ve had my biopsy and my Marsupilization (so far so good, my KCOT is getting smaller) about 4 months ago (on March 15 2016). My surgeon is not sure about when I should get it fully removed but he said I should give it more time. What I’m most consern right now is the reoccurrence and the nerve damage (my surgeon said the chances for reoccurrence goes up to 60%). If you guys have any question/want any advice, I would love to reply, contact me

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  88. My son has a very very large cysts in his bottom left jaw. It has actually started to make one side of his face look a little swollen, although the Dr said it hasn’t gone through the bone (yet).

    I’m wondering what would constitute the need to remove a cyst in sections? Size? Placement? Does removal in sections lead to a higher rate of nerve damage?

    • Hi Jasmine I’ve just had my third surgery on a golf ball sized cyst that was growing into my sinus cavity from a tooth root. I have no feeling along my top gum from nerve damage. My cyst had eaten some of my jawbone away. I’m hoping it’s the last of the surgeries for me.. My maxillofacial doctor said they should be removed as a whole but I suppose it depends on the type of cyst. Keratocysts are very aggressive and can come back if they aren’t removed properly. I hope everything goes well for your son..

  89. Last Friday I had my third surgery. The first was at age 16 in the location of where my upper left wisdom tooth was to come. The second was in mid 30’s when they found that wisdom tooth growing in my sinus. It was surrounded by a keratocyst the size of a peach. This third surgery at age 56, was a large cyst same location not quite a large as a peach but up into the sinus. They removed a second molar this time but said they know they didn’t get it all. After the 2nd surgery, I went for panoramic xrays every year for 5 years to make sure it didn’t return. They saw nothing. Is there any better solutions? should they be going in every couple years when they are small?

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  91. Hi everyone,

    I’m reaching out because I can’t seem to find much discussion anywhere else on the recovery process of having an OKC removal.

    I’m a 24 year old female in Toronto. I had my second surgery on a reoccurring OKC, it was done at the University of Toronto school of Dentistry at Mt Sinai. The enucleation was done a month ago and I’m still in the process of recovering. They had to remove two cysts in my lower right mandible, one was measuring 4cmx2cm (about the size of an apricot) so my jaw mobility and diet has been limited. I’m just wondering if any of you had experienced any problems with foul mouth odors? I’m a month in and my mouth still smells like a dump yard. I brush my teeth after every meal, rinse with salt water and floss with a waterpik but nothing seems to help….. I’m just wondering how long this will persist.

    • Sorry to hear what u are going thru. Peridex rinse is good to kill bacteria in the mouth which is the source of most odors. Its an Rx in the USA. Did u consider decompression as opposed to removal which is just putting a tube to drain the cysts? i had a recurring large okct and the first time it was peeled out(found when having gum surgery[distal wedge]) and came back 4 yrs later then had decompression. They are less likely to come back after decompression too . so its going on 6 yrs and everything is clear.

      • Hi I just had a drain installed in the back of my right jaw. Is it possible some of the cyst to get flushed out while cleaning the drain with a syringe? I noticed a clear with cheesy like deposits today and had a foul smell.

  92. At age 16 I was diagnosed with having my upper right wisdom tooth in my sinus cavity. I had surgery to remove the wisdom tooth where it was found to be enclosed in a cyst type material. Fast forward 20 years and I found myself at the endodontist for a suspected root infection on my upper right back tooth. After having a cone beam x-ray done it was determined I had several large cysts along my upper right molars going into my sinus cavity. I was referred to an oral surgeon who performed a biopsy and it was determined I had 9 KVOT cysts spanning from tooth #2 – #5. Due to the size and ovation and also the probability that the cyst found when so was 16 was also a KCOT my oral surgeon was very aggressive in removing the cysts to prevent recurrence. I had all 4 upper right teeth removed along with all of the bone as well. My entire right sinus cavity was completely scraped to remove any cyst lining to prevent recurrence as well. Since I no longer had teeth or bone as a barrier to my sinuses part of my cheek was pulled over and sewn to provide a water tight barrier to protect my sinuses. Surgery was quite painful and even now, almost a year later, I have numbness in my cheek area by my right sinus cavity and the right side of my upper lip is numb along with my right upper front tooth and incisor. Because of having no bone or ridge or any kind I cannot wear a partial so I am working with the oral surgeon to explore other possibilities for replacement teeth. I had a follow up in Nov of last year with a pano and nothing has came back as of yet. The doctor has informed me most cysts come back within the 2 year mark of having the surgery so next March I will go in for a CT scan and will bring having panos and CT scans periodically for the next 20 years. I can only hope I do not have to go through another one of those surgeries. I lost a bit of blood due to having the sinus cavity scraped and was quite sick and in pain. I hope those of you going through this have a much easier time.

    • You poor thing. Are you able to wear a temporary partial? My daughter went through something similar though the cyst did not enter the sinus cavity. She as well waited many years and finally had surgery to replace the bone, gums, and teeth. She had the bone harvested from her hip. That was the easy part. You have no choice but to wait for multiple panorex scans to come back clean. Best of luck. This is a great Resource Center and anyone who posts knows what you are going through.

      • A temporary partial was made but since I have no bone left there is nothing to hold the partial in place. I did discuss the harvesting of bone in my leg but I really do not want to go that avenue. I was told I could have visible scars on the outside of my face. I am lucky that when I smile you cannot tell I have any missing teeth and have just grown accustomed to chewing on my left side. I was told I do have some bone left next to my eye tooth and also the very back of my mouth near my jaw. We are exploring the possibility and placing implants to hold a partial in place but I am holding off until the 2 year mark before I invest that kind of money and they come back.

        • Hi Rachel,

          My daughter had three teeth removed, the gum, and bone, and they made the partial to hook onto the top of her mouth next to her front teeth. Between the hook and suction it worked. Maybe they need to tweak the partial. Do you live in the US and if so, are you near a dental school? They were wonderful to my daughter. Medical insurance paid for the bone harvesting, and the implanting of the bone into her mouth. Please let me know what I can do to help.

          Greta Miner

  93. My daughter who is only nine years old had inflamed gums on her bottom right jaw , immediately I took her to our local dentist who thankfully done a full x-ray which showed a large shadow in her jaw . We were referred to a maxillofacial clinic which booked us in for an emergency biopsy , luckily the surgeon managed to remove what we found out later on to be odontogenic keratocyst but was told this is a common cyst with unluckily chance of recuring . They did not remove any teeth but the cyst was where her adult teeth are due to grow but have been pushed aside and we now have a long waiting game of whether these teeth will grow at all and if so where they will grow up . I am very anxious as to what is going to happen has any one else had this happen to a child and did their adult teeth finally grow ?

    • My daughter was 12 when we saw an abscess on her gum above an upper tooth. Went to a Maxillofacial surgeon who found an OKC, drilled a hole approx the size of a quarter and took out as much of the cyst as he could. She had to irrigate the hole every time she ate. She also had braces as well. My story is quite different from here so I will just hope your little one’s cyst does not return and her adult teeth come in smoothly.

  94. Oh dear. I need to try to condense my story. Around 1999 and xray showed up a dark spot when I went for a cleaning. I was referred to and ortho who scheduled the removal of the k cyst. My regular dentist decided to use me to teach another how to do a root canal and used the tooth above that cyst. I heard him say, after he drilled it out that he would NOT clean our the residue as usual. Well, the surgeon had said he could save that tooth and the dentist caused a horrible infection and after a 4 day in the hospital on strong antibiotics and weeks at home on the same orally, my surgeon and I agreed I was as good as I was gonna get and the infection was to deep for the antibiotic to reach. He removed the cyst at his office and the tooth as well had to be removed thanks to my regular dentist at Western Dental in San Diego. A few years passed and I thought I felt a small lump I had different insurance and went to a Kaiser Permanente ENT. He said yes it’s back and I can get it out. He did. This was around 2002. No grafting, just removal. THEN in 2013 another cyst another state and another surgeon, he took one look at the scan and said he could NOT do the surgery because the cyst was so large ( like a peanut size still in the shell and in the empty tooth space and buldging out the front and back) He said if he removed that I would have a broken jaw and I needed to get to a teaching hospital. I did. Found a surgeon and got a referral and went to Wake Forest. Wonderful doctor. She did the removal and resection of my bone and grafted bone from my hip (which has the most pain after). All went well. I did not have to be wired which was my biggest fear. I went back for my 2 year ck up and got a scan. Nothing. Well, I felt something a year later. Went for a scan with a local surgeon and it was back. So I went to my origin Wake Forest surgeon with my scan. By then she had brought in a second surgeon and I was to meet. He explained how delicate and concerning this surgery would be. He would have to have live bone and not cadaver. He would have to do and angiogram on my leg and remove bone, tissue and skin from my knee area all to be put inside of my mouth. He stated there would be a chance the bone would die before it got to my mouth. He stated I would have my original surgeon taking the cyst and the metal plate out of my mouth while he removed the stuff he needed from my knee area. I WOULD BE WIRED. Sheer terror for me. He stated there would be a chance of it not working, a chance of a second surgery and also I may not look the same. I left in shock. This was Feb 2017 and I never went back. I need a second opinion or option but have been frozen in fear so much I can’t look or research. A friend sent me this. I will go anywhere and have insurance. I have no pain. I can feel pressure. My last tooth in the back is loose. I was told that this surgery was due to it being 4 centimeters and if it were smaller I could have a lesser surgery. MY QUESTION is 1. he showed me on my 2015 2 year followup scan a tiny cyst forming and then in my 2017 scan how big it had gotten,BUT no one ever told me it was back in 2015 and perhaps a simple removal could have happened? 2. Also when he stated 4 centimeters it seems he is including my back tooth and the cyst is under my eye tooth area so I am confused. I WANT A SECOND OPINION OF THE SIZE, PROCEDURE, AND IF I CAN NOT BE WIRED. ANY REFERRALS WELCOME.

    • i feel for u and all u have been thru and what u will be put thru. My experiance with these cystic tumors started in 1996 on xray started growing and was discovered in 2005 with gum surgery the perio doc wanted to remove two teeth and put cadaver bone in i was like no way asked him to just remove the cyst which he did biopsy confirmed OKCT and it came back in 2010 with a vengence i optied decompression tube to drain and shrink the cyst and started taking compounds to target and counter the cellular disruptions that cause these cystic tumors and took vit K[phytonadione](100 mcgs per day) vit D3(1000ius per day) to regenerate the lost bone. In 10 months the area was totally back to normal (which the dental school in gainsville and never seen happen before) and its been over 6 yrs and everything is still normal i take a fews things to keep this from coming back cause with me the problem is in the bone. the compounds i took and still take are ginger powder 1/8 tsp per day theaflavin extract, ceramides(from wheat) and toco trienols ( a form of vit e) and galangas powder. When i first started takes these i could feel it in the area about 10 to 20 minutes after i took them till the cyst was gone. wish u the best. the substances that i took and take are based on advanced research (Cellular biology) to target the submolecular problems that cause these tumors.

  95. Hi everyone,
    This page has been such a great summary of what I am going through as well. I have gone the marsupialization route myself. I had the gauze in my mouth for almost 6 weeks to create the hole. Tonight has been my first attempt at flushing the hole with warm water and the syringe with a bent tip.
    What I find frustrating is that I can’t tell if I am doing it right. because the hole is in the upper left behind my teeth, I can’t really see what I’m doing. My Maxillofacial Specialist is great but said I won’t see anything coming out when I flush it (although I did get a bit of blood and food out).
    Any tips on how you’ve done the flushing with the syringe, what it felt like etc? To be honest, after all the pain, swelling (to the point of looking pretty deformed on the left side of my face), time, money effort, I’m just so worried that all of this will be for nothing and I won’t get any reduction in the cyst.
    Any advice will be greatly appreciated!

  96. Oh boy. Unfortunately everybody reacts differently so what might work for you might be moot for others. That being said, my daughter had to irrigate a hole as well. I felt so badly for her because at the age of 12, she should have been out riding her bike. She also had braces which didn’t make it easy. Are you using a specific rinse solution or just warm water? Just use the syringe to shoot the solution into the hole and then swish around some more of the solution so it gets all around your mouth and into the hole. Then obviously rinse out everything. I know it’s a wait and see game but you are doing the right thing so far and I will cross my fingers that the surgeon removed all of the cyst.

  97. Hello Tom ,
    I have A KCOT that has eaten 2/3 of my jawbone. I was told it is infected though I have no fever or swelling , only after the biopsy .
    Are not all KCOTs infected ?
    How would an infected KCOT go with a drainage tube or a Carnoy’s solution , both of which are in the near future?My KCOT is the size of an egg .
    A dental hygienist noticed red under my gum line but did not refer me on , when I had my last scale and clean .
    Is that usual with KCOTs or would it be infected ?
    The oral surgeons at the facility are very busy and I find it difficult to discuss such issues .
    I would be very grateful for any clarity about this .

  98. Could salivary glands be involved with developing odontogenic keratocysts? I had oral surgery almost three weeks ago to remove an OKC that had grown where a wisdom tooth was removed more than 50 years ago. It was diagnosed by an ENT as an infected salivary gland more than 6 years ago. Periodically I would have infections on that side and antibiotics would clear it up, no problems. Then, 2-3 months ago antibiotics would not work for more than a couple of weeks. I always had the feeling in the salivary gland of a tightness and reaction to sour foods just where the cyst was located. I am now having that feeling on both sides in the lower jaw.
    I am so thankful that I found this site.


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