Odontogenic Keratocyst

Today was a long day. LaDawna took Darlene and Russ to the Oral Surgeon. After they left I found out that Hilary was planning on going. Hilary said she had been telling Dar for five days that she was going. It appears Darlene left about an hour early. Hilary was very upset. At the Oral surgeon LaDawna and Darlene waited outside. It appears that Russell was taken inside and given an IV and put to sleep. The doctor then, as I understand it, took out a bit of jaw bone and put in a "window", I would call it a shunt, and I am not sure what else he did. After Russ was awake the doctor made sure that LaDawna and Darlene saw the X-Ray. LaDawna was shocked by the X-Ray. Russ has a very big cyst and almost no jaw bones on that side. The jaw bone is thin like paper. The doctor make it clear that Russ not to chew anything. No chewing of food or anything. He is to be very careful not to break the jaw. The doctor gave them instructions. Russ was sent home. When he got home Aaron helped him into the house and upstairs. Russ started to throw up. He layed in Hilary's lap and she took care of him for awhile. I think her taking care of him and Darlene staying in the other room ..may have helped clear the air and help with the problem between the two of them. Russ has a bunch of medication to take. He has a mouth wash, pain medication and other medications. He also has a syringe to stick in the port/shunt and attempt to drain the cyst. Russ got sick again later. Jimmy went and rented two movies. Darlene, Jimmy, Russ and Hilary watched a movie. LaDawna, Aaron and I went to Wal-Mart and got some more medication for Russ. Later LaDawna and Aaron said goodby to us and went to their motel. Tomorrow early they start their trip back to CA. I felt sad and sorry to see them go. I hope we don't have to wait four or five more years to see them. LaDawna has taken a bunch of photos. She will send the film in and then scan the photos and her photos will be here online in a few weeks. I wish I had the money to buy her a good digital camera. She in very good at photograpy and only wants a good digital camera. Russell has an Odontogenic Keratocyst (OKC Cyst). They are very rare. I did not know that Russell could be so brave and good about something like this. I found out something that I did not know...Russell did some research on his own on the Internet. Before they went into see the doctor he told LaDawna somethings. She asked if the doctor told him that information and he said no he found it on the Internet. He was correct ...later the doctor told them those very same things. We have to wait for the doctor to get back with us on the lab test. I am sure each of us has our own fears about all of this. From what little searching I have done on the subject... I am worrying about infection and about fact that they can return. Also I am worrying about his maxillary sinus. We all have to pull for Russell. We got to make sure that he takes his medication and keeps doing everything that the doctor said to do.

ODONTOGENIC KERATOCYST The odontogenic keratocyst (OKC) derives from the dental lamina and its most frequent location is the 3rd mandibular molar area (80%) with a ratio of 2 to 1, mandible to maxilla. OKC has a marked tendency to recur, the recurrence rate has been estimated to be around 60%. They can be single or multiple, if multiple. they most likely are part of the nevoid basal cell carcinoma syndrome (Gorlin syndrome). Based on various reported series the OKC represents between 1.5 and 11% of all jaw cysts. They can be found at any age but with a peak incidence in the 3rd and 4th decade of life. OKC is more prevalent in males than in females with a ratio of 2:1. The clinical appearance of OKC varies from a symptomless incidental radiographic finding to painful cystic lesions. Paresthesia may also be present in some patients as well as secondary fractures when the cyst is large. The maxillary OKC tends to be secondarily infected with greater frequency than the mandibular ones. That may be due to its vicinity to the maxillary sinus. The above information came from: http://www.dent.ucla.edu/ftp/pic/visitors/Cysts/page2.html

Comments

[Danielle]

I am actually to familiar with this story, I have the same cyst in my jaw, and I am having surgury in january to remove it, hopefully all of it, I have had it now that I know of for 3 years and it is now 2.5 by 3 inches in diameter. To all that have this horrible thing I wish you all the best, I know we all need the best wishes and prayers to get through this.

[Mark]

I also have one of these things that has been treated and recurred. They say it may need several attempts to remove it but ultimately it will go. Sometimes they get all of it on the first attempt. Good Luck to you.

[Candice Collins]

I also have a cyst on my jaw, about 2 inches. I'm going in for surgery on Thursday, Jan. 19th. I am going to lose two (only two, hopefully) teeth. These two back teeth aren't in the best of shape, anyway but I'll be sad to see them go. Which came first, I wonder. The cyst or that bad tooth? I wasn't prepared for how awful I felt after the biopsy so I'm not looking forward to this. Wish me luck and pass the soup!

[mike]

My son went through 4 surgeries, the cyst took over the sinus area. Its been a long road, so stay strong. Sometimes I felt this would never end. But God helped us through it all. My son has had 4 MRI's since his last surgery and it has not returned. A Thank You to above it all over.

[mark]

Hi. I have had surgery on my recuring mandibular keratocyst on 8th feb 06. It was about 2.5 cm by 3.0cm and had been there for approx 2 years but max fax surgeons failed to identify it on previous annual xray. A piece of advice. Make sure whoever reads your x-rays is capable of doing so because obviously a small cyst is easier to treat than a large one.

[David Vice]

I am fixing to get my cyst removed for the 4th time

[AB]

My daughter has an odontogenic keratocyst. She had surgery in Australia while she was studying abroad on what we now believe was this kind of cyst. It was huge by the time it was surgically removed. On a recent X-ray there appears to be another cyst--possibly a continuation of the huge one she had in Australia or a new one. I have seen many oral surgeons and am getting different methods of treatment. One recommends marsupializing the cyst so that the bone can be strengthened. Has anyone ever had this? If so, did it work? I'm concerned about just postponing the inevitable surgery. Naturally, I am hoping we can AVOID reconstructive surgery. I might add I live in an area with excellent hospitals and surgeons. The doctors I have seen are very reputable. Please e-mail me--abaltimore@sbcglobal.net if you have any comments. Thank you

[Greg]

I have been diagnosed with a very large OKC in my sinus and was told by two doctors the only way to remove it completely would be to remove several of my upper front teeth and alot of bone but it still may come back. The last doctor told me he would take the top off of the cyst and leave the rest there and it would not continue growing. Has anyone heard of this method?
it@secure1.net

[Greg]

I have been diagnosed with a very large OKC in my sinus and was told by two doctors the only way to remove it completely would be to remove several of my upper front teeth and alot of bone but it still may come back. The last doctor told me he would take the top off of the cyst and leave the rest there and it would not continue growing. Has anyone heard of this method?
it@secure1.net

[Theodore Fernando]

I have been diagnosed with a odontogenic keratocyst of the anterior mandible. I had the 30x20x3 mm cyst removed on Tuesday. I am then to receive chemical treatment this Thursday to minimise the likelihood of the cyst returning. The treatment "eats" away at the tissues where the cyst is believed to have originated. This apparently lowers the recurrence from 70-80% to about 10%. I will then receive a bone graft (once the tissue has regenerated). Bone is taken from my leg (tibia) and grafted into my jaw.

[Carlie]

I just had surgery to partially remove a large OKC cyst. It was fairly unpleasant, and I'm still fairly swollen. A stent (small tube) was inserted into the sinus through my upper jaw, and it has to be irrigated 2x every day to alter the aggressive nature of the OKC cells, to shrink the cyst and hopefully eventually eliminate it. Images will be taken periodically over the next 10 months to monitor its progress. Apparently this is the current standard of treatment for this type of cyst. Sure hope it works the first time, and I don't have to go through what others have with multiple surgeries. Good luck to us all.

[Anita]

Carlie---is this standard procedure for this type of cyst? I'm not sure about that. My daughter ended up having surgery and according to a pathologist dealing with these types of cysts, he felt they are actually cystic tumors so marsupialization wouldn't work. Course there are no guarantees the surgery got the entire cyst. I am interested in hearing how things go with you. Keep me informed. Thanks and good luck.

[natalie]

i have just come across this page after having a massive keratocyst removed from my left mandible (jaw) a few days ago. my maxillofacial surgeon performed very aggressive surgery which will reduce my chances of getting a reoccurrence to 10%.

he told me that the cyst was removed, and then 2-3mm of bone surrounding the area was also removed and then flushed with chemicals that seek out the cyst cells. he said that his way was much more aggressive than other surgeon's ways, but this will reduce the amount of operations i will need in the future.

the worst thing is going to be eating mushy food for 6 weeks. i'm definitely going to miss having a big juicy steak!

[Devesh]

Hi,
I had a surgery about 3 months back for OKC. It was around 8 cms long in the mandible (from premolar extending to the Ramus). Four teeth had to be extracted to get the cyst out.
Will go for a follow-up x-ray next weekend -for the first time after surgery.
Guess that there is very little awareness about this condition (even I was unaware until I had it) - hence my bosses felt that I was taking a good 3 weeks off for some petty dental issue.
After one month of rest, I have resumed my normal schedule (though hard food is still off the plate).
Commenting on blog is a good practice - atleast reassures the person and his/her family.
Best of luck to all,
Devesh

[Isabel]

I also had major surgery with OKC. The ENT head and neck surgeon removed my right mandible along with my teeth (8 of them) and replaced it with my fibula bone. The procedure is also called fibula-free flap transfer. The procedure was drastic but recurrence is 0 and it only took one very long surgery. The next step is for dental implants since dentures are not an option for me.

[Tara]

My husband had an OKC removed from his jaw and it was the size of a deflated tennis ball, they also say that their is more that they oral surgeon couldn't get to. Now the oral surgeon wants him to go to a university hospital to have his right jaw replaced because this cyst ate it. If anyone could let me know what is entailed with this surgery we would appreciate it. Taracrogan@aol.com

[Vicki]

I had surgery 3weeks ago to remove a large keratocyst, I believe about 1-2mm of bone surrounding the area was also removed and then treated with a caustic treatment to kill any other cells which are present. this treatment should greatly reduce chance of recurrence. I have been in considerable pain probably due to the surgery and nerve damage. Can anyone tell their experience of pain after surgery, how long, what kind and whereabouts.

[Digna Morales Olivero]

Hi, My name is Digna Morales from Puerto Rico. I have a sister who was been diagnosed with Keratocyst. She had a surgery 2 years ago. Now she is having the same problem.
The plaque result read as follows:
There are surgical changes to the right mandibular angle with expansion tooth narrow cavity and mildly thickened cortex. No radioluscent cyst are noted surrounding the tooth sockets are to imply the presented of are residual.
No signficant odontogenic disease is otherwise observed. The maxilofacial bones otherwise demonstrated a retention cyst of the left maxilary sinus. Bone trabecular pattern to the calvarium appears.
Impresion: There are post operative changes to the left mandible. It is unknown if patien had previous resection of mentioned diagnoes clinical history.

Please let me know if these result is good or bad. What can I do. I would like to take her to US. She don't have a private medical plan. Depend on Government help. Let me know what to do.

Thanks!

[Srikanth]

Hi,
I had a pain in my tooth few days back and consulted a doctor who said that it is a OKC. I had a surgery one week back. Its really very paining now after the surgery. Doctor says, the cyst has eaten my bone and it takes few months for it to cure. I even have a swelling now after one week of surgery. I still want to know, for how much period this pain will b there?? thanks.
Viki, ur case looks something like mine, could you plz answer my Q. Thanks.

[Aisling]

Hi, I have an extremely large OKC it is 11cm long and is infected. The surgeon has never come across one so big. It has been growing for years according to him. I had the biopsy last week and found it quite tough. He has given me two options for removal. One procedure would be the drainage of the cyst hoping it will shrink over a number of years and not dammage the nerves as much. The other is the complete removal of the cyst including teeth. That will take place in 4 weeks. The Cyst is in my lower jaw. It is completely covering all my nerves in that side of my cheeks. He said that there is an extremely high chance that my nerves will be damaged and that i will loose all feeling in my cheeks lip and tongue. I am very scared as i am only 20. Does anyone have any advice on which procedure to go for? Or if anyones nerves have been damaged what to expect?
aisling.larkin@hotmail.com
Good Luck to All

[Malcolm Crawford]

I live in the UK and first had surgery on redontic keratocyst on lower right mandible in 1995. The cyst recurred in 2004 and a further marsupialisation procedure was carried out. I have recently had another procedure to widen the hole in which the remainder of the cyst is located. I had to have one tooth removed in this procedure but am hopeful that this will be the final procedure. It will be a long process, however it hasn't stopped me doing anything and I would encourage people to keep getting regular reviews and x-rays and stay positive.

[Lori]

My doctor just called me this morning on the report of the bone biopsy. It turns out I have the odontogenic keratocyst. They found I have two of them next to each other, extending up toward my ear, under my lower wisdom tooth. I have an appointment with the oral surgeon on Monday to discuss options. I'm thinking along to the lines of having the surgery after reading everyone's comments. I'm tired of eating the mushy food but it sounds like I'll be eating it for a lot longer than I thought. UGH!!! I thought I was the only unique person in the world to have this. Good luck to all of us with this condition.

[Fabian]

I use to have pains and small hard swellon growth on my lower jaw. I started having this feling for almost one year now .I decided to meet a dentist who demanded for x-ray. My x-ray result has shown a wisdom teeth buried inside my jaw and a cyst that follow it to my Scissors .
The doctor has suspected this to be a cyst and has to take sample for the laboratory test.
While removing the sample, he has to cut off some part of the growth, which he said is red coloured. The sample is now in the lab. The area where the same was cut out is swollen , and Painful , am i in a good hands.
Thanks
Answer me
fonuorah@yahoo.com

[Steffy]

I had a golf ball sized OKC in 2000 removed from right upper maxilla with facial degloving. It was great because I have no external scars. I have been going for annual CT's and I may have a recurrence? I will go to MD in April and if x-ray changes MD will make a flap to check things out. Uggghh. This isn't really fun, but I recommend also staying on top of things because small OKC's are easier to remove. I was treated by Great Dr's at University of Michigan, USA and Emory Atlanta.

[Fabian Onuorah]

Dear fellow,
I had a successful 5 hrs surgery on a cyst measuring about 2cm on my left lower mandible and the last wisdom teeth was removed and part of my bones around area of cyst cut off.

During the 5 hrs surgery, i was half dead and could notice the heating on my jaw when the wisdom teeth is being removed with what i feel was a hard hammer. The surgery was from inside and shows no scars outside. The surgry was carried out on 9th of Decemeber 2007 and i was able to eat well before 27th Decemeber. Now i dont have pains but i notice some little swell every morning and it will disappear after some hours.

The swell is arround the cyst area which could be a reaction of the tissue - i am not sure .I dont have any feeling towards the left side of my lips till date. Doctor said the the bones will grow back and that the areas where i dont have feeling will still be normal because the nerves that is supplying blood will regenerate and continue its functions.

I will go for xray at the end of the month january . I am also waiting for the confirmation of the lab result on possiblity of another cells that could possibly grow from the area again.
Thanks for commenting on this case

Fabian Onuorah
fonuorah@yahoo.com