Odontogenic Keratocyst: Overview and Treatment

Odontogenic Keratocyst: Overview and Treatment

Keratocystic Odontogenic Tumor
©Nephron/WikimediaCommons

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.

Questions?

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!

97 COMMENTS

  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!!

  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 done.im 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.
    sucess
    d.meijer

    • 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.

          Thanks,
          Cathy

          • 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.

  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?

  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 amcohen928@yahoo.com 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..
            Tammy

            • 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.
        thanks

        • 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 amcohen928@yahoo.com.

          Amanda

  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?

    Thanks,
    Pam

  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 amcohen928@yahoo.com. 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!
      Amanda

  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 amcohen928@yahoo.com.
      Amanda

      • 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 problem..my son who 29..diagnosed with medulloblastoma in 1988..surgery..full 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..

  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.
    Jane

    Reply

    • 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

  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

  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 ! ! !

  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: ivan84m@gmail.com
      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: ivan84m@gmail.com
    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?

  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!

  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!!

Leave a Reply