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jaw bone replacement surgery

whr0714
Posts: 1
Joined: Sep 2004

I had tonsil cancer in February of 2002 and as a result doctors removed my tonsils. Then, although my cancer was, as the doctors put it 99% gone, was advised to have chemo and radiation as a precaution. The radiation, a six week, daily treatment has damaged my jaw bone resulting in excessive bone loss and removal of 3 teeth on the lower left jaw bone. Now, I am in constant pain and can no longer open my mouth more than a half inch or so. The pain is chronic and take morphine daily. The only thing left to do is have my jaw bone replaced by using the small bone in my leg. I am only 54 years old and feel I could handle any operation well enough (but who wants to). My questions and concerns are many, but I mainly would like to know if any one has had this proceedure and could offer any advice or alternative solutions. I will have to do something soon because the pain and the drug use has gone far enough, I would be fine living with the condition if I could just stop the pain.

loveh20
Posts: 1
Joined: Oct 2005

Hi - if you don't already belong, you might check out the discussion groups on www.oralcancerfoundation.org. There are many, many people there who have had tonsil and tongue cancer and several have had jaw replacement surgery. They may be able to answer your questions.

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

Thanks for sharing the link, I might be looking at Jaw bone replacement in the future and need to start finding more about it now.

PattyNC's picture
PattyNC
Posts: 65
Joined: Oct 2006

I joined this site back in 2006 when my brother was diagnosed with head & neck squamous cell cancer of occult origin . Mikey is 52 & yesterday he had a PET and the good news it showed NO cancer. However, the doctor told me my brother's jaw bone loss is severe & will require removal of dead bone, etc. He said they would not do the surgery for my brother unless he stops smoking (which he has continued to smoke since his first diagnosis). I see the other post mentioning site oralcancerfoundation.org so I will probably join that site too. Looking for input from those who have undergone this procedure so I can support my brother in his journey to stop smoking & make a full recovery.

newbride
Posts: 142
Joined: Jul 2009

My husband had his entire upper jaw removed and reconstructed from bone in his leg as well. The surgery went well and you can hardly tell his jaw was reconstructed. He isn't in any pain.

Unfortunately, the surgery and radiation/chemo didn't work to kill his tumor and it is still growing aggressively.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

you dont post as much as you were. Just wondered how things are going with you?

thegirlfriend

newbride
Posts: 142
Joined: Jul 2009

Thanks for noticing, missing me. Things have been rough here. 9/29 my husband had a CT done and on 10/1 we were told none of the aggressive treatment he had worked. He was given an option of additional surgery which would require removing all bone from his face under the eyesockets and complete reconstruction - the doctors said doing this only gives him a 10% chance of being cured. He has decided he does not want the surgery. Honestly when he asked the doctor what the doctor would do in his shoes the response was "from an ethical and moral point of view I don't know if I should encourage you to do this, but from a medical point of view if there is 1% chance you should fight for it".
I think he made the right decision and we can live the rest of his days pain free.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

omg, Im so sorry you are having such a rough time of it. Its a rotten place to be in.
I dont really have many words that will make you feel any different than you are feeling right now. How are you both with each other now regarding talking about plans and whatnot?

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Thanks for posting newbride. I'm sorry you and your husband had to make that choice, and hope you'll keep posting. This is a survivors' board, and many of the people who post here are living at different stages of survival. We don't get many, or any, posts from our brothers and sisters who have made your husband's choice, or walk your path, and we should. Your doctor's words were wise. The medical point of view is a narrow one, and the decision should include the ethical and moral standards as well. There is only one correct decision, and that's the one you and your husband make. I wish for many peaceful and happy days for you both.
best, Hal

kurt2874
Posts: 1
Joined: Oct 2010

Hi,
My name is Kurt and if it was not for your tonsil cancer, mine was on my tongue, everything else is exactly the same. I had cancer 3 yrs ago and am going through this jaw thing now. I am not sure what to do. I have surgery scheduled for Nov. but am skeptical if this is going to solve my problem. I really do not want to endure this surgery if I don't have to. I can open my mouth about 3/4 of an inch and eat things 3/4 of an inch or thinner. That is getting pretty tiresome. My lower left jaw is in constant agony and I am thankful to be cancer free. I guess I am trying to find out has anyone gone through this lower left jaw replacement surgery and can give me or whr0714 any advice?

Buddy1020
Posts: 5
Joined: Dec 2010

Kurt, Please tell me how you are doing now. Read my post. I'm scared out of my mind. IF you give me your email I'll send you a current photo for you the way I look right now. I hope you'll respond.

MJ70
Posts: 65
Joined: Nov 2010

I would not worry about this surgery as it is alot more common than most people know.....If anyone who lives around a large Medical Shool teaching Hospital or any Doctor who has a MD/DMD degree they will know all about this surgery...

sweetgammy's picture
sweetgammy
Posts: 20
Joined: Jul 2011

Hi!
I am in the same situation as you! Did you go ahead with the surgery in November? how did it turn out?
Marianne

Debi16043's picture
Debi16043
Posts: 49
Joined: Aug 2011

Hi everyone. I had gum cancer and it had gone into the mandible, jaw bone. My surgery was June 15, 2011 and it was a 13 hour surgery. They cut out my jaw bone, removed all of my teeth, made me a new jaw bone out if my leg. I was in MD Anderson seven days. Only in a lot of pain first day with leg and barely noticed any of the pain in my mouth even though all my teeth were removed, 9 implants put in and I had a trach. I'm doing fine now. I also had neck dissection and dr removed 75 lymp nodes, all cancer free. She said that was the most lymp nodes she had ever seen on one side. Lol. I can still walk fine and ride my bicycle. I feel the bone gone in my leg but it is not really painful just a hy. I'm in no pain except I'm now trying to get used to full mouth dentures, not easy, but hey I'm still here. I also had radiation so my jaw doesnt open as wide as it used too. During my surgery they had to cut some muscles on the side where cancer was so my smile is crooked anyone wants to see a pictur send me you're ail address I have photos of leg and jaw and now crooked smile. Lol. I hope any of this was useful but ask anything you want to know. My email address is dmassey1507@aol.co. As I don't get on here much but do answer all emails.

Debi16043's picture
Debi16043
Posts: 49
Joined: Aug 2011

Hi everyone. I had gum cancer and it had gone into the mandible, jaw bone. My surgery was June 15, 2011 and it was a 13 hour surgery. They cut out my jaw bone, removed all of my teeth, made me a new jaw bone out if my leg. I was in MD Anderson seven days. Only in a lot of pain first day with leg and barely noticed any of the pain in my mouth even though all my teeth were removed, 9 implants put in and I had a trach. I'm doing fine now. I also had neck dissection and dr removed 75 lymp nodes, all cancer free. She said that was the most lymp nodes she had ever seen on one side. Lol. I can still walk fine and ride my bicycle. I feel the bone gone in my leg but it is not really painful just a hy. I'm in no pain except I'm now trying to get used to full mouth dentures, not easy, but hey I'm still here. I also had radiation so my jaw doesnt open as wide as it used too. During my surgery they had to cut some muscles on the side where cancer was so my smile is crooked anyone wants to see a pictur send me you're ail address I have photos of leg and jaw and now crooked smile. Lol. I hope any of this was useful but ask anything you want to know. My email address is dmassey1507@aol.co. As I don't get on here much but do answer all emails.

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

I have watched two of my friends in our local head and neck cancer support group have their jaw replaced. Both have recovered and doing very well. It is not easy that is for sure. But I can saw after talking to both of them that the surgery is far easier than going thru radiation and chemo.

FYI, I am 14 years post treatment and will some day as the long term side effects catch up I believe do to my teeth being so bad that at some point I will have to have the surgery. There will be you question I will feel positive about the results. I too am 53 years old and look forward to many more.

John

Oh ya, I so look forward to the day with out pain.

sweetgammy's picture
sweetgammy
Posts: 20
Joined: Jul 2011

Hello!
I too need to have a jawbone replacement and like you have lots of pain asociated with infection and bone death. I have been putting it off for about a year now because I can't bear the thought of another hospital stay as well as the danger of having it not take because of being radiated twice. I can tell you however that it is critical to choose the most competent plastic surgeon to do the job. There is a Dr. Blackewell at UCLA who has done ove 1400 of these surgeries. I have contacted him and am very impressed with his record. I intend to go see him this January.
You may also want to look him up. I also would send all my info to Mayo and MD Anderson in Houston.

If you'd like to delay I would suggest the fentanyl patches in addtion to the morphene . I am on both and the pain seems to be under control and I don't believe that that amount is too dangerous. I use a patch of 75. PLease let me know what you decide and if this was helpful. You can e mail me directly at marianne2428@yahoo.com

Good luck in any case! God Bless!

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Hondo
Posts: 5881
Joined: Apr 2009

Glad to have you here with us so welcome to CSN. I have a question you say you had radiation twice what was your Cancer. I had NPC and also had radiation twice to the face; a lot of my pain is all on one side, the side where I did not have the cancer. Also problems with can’t open the Jaw more them 14mm.

I hope you stay and add support to the forum here, Thanks
Hondo

sweetgammy's picture
sweetgammy
Posts: 20
Joined: Jul 2011

Hi!
Sorry I have been away from the site for awhile. PLease update me on your situation. We both have been radiated twice! I have had squamous cell carcinoma on both sides of my tongue with flap surgery. Currently the radiation is destroying my jawbone and I will need a replacement. I am looking for any feedback regarding a replacement. Can you give me any information or advice? where is the best place ot go?Who is the best surgeon? Are you experienceing anything like this? I understand that the success rate on a doubly radiated person is very low because of lack of a good blood supply! True? thanks!
Sweetgammy

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

Hi sweetgammy,

This surgery is not that unusual. There are many experts in the field who do this. Osteoradionecrosis is an unfortunate, but fairly common late sequellae of radiation to the mandible. It effects a certain percent of us who have radiation once, and is obviously going to prove more common in those of us who undergo radiation a second time. I'm not certain I'd panic over the selection of a surgeon to do the surgery.

I'm getting ready to undergo radiation for my third malignancy, having had radiation the first time in 1998, then very radical surgery last year, and now chemo/IRMT this time. I chose an ENT oncologist back in 1998 who was then head of ENT ONC at St Louis University. He's now in private practice elsewhere in the city, but I still see him. He's done all my surgeries, and does mandible reconstructions all the time. He's a very competent man, and when and if I need replacement, he'll be the one I use.

But there are many like him, and any one of them would do you a great job. The surgery required is about the same as what I went through last year, for radical removal of a floor of mouth malignancy, and I can tell you the surgery is tough, lasting over 12 hours, and the recovery is, well, about what you'd expect. It took quite a while to get over, but i was back to running long distances and doing about anything else I wanted in about 4 months.

retiredosc's picture
retiredosc
Posts: 3
Joined: Jun 2013

I had oral cancer 2 years ago, had a freeflap surgery on left side of tongue and base of mouth. Went through intensive radiation and chemo. As of today I am still cancer free!

The draw back is now my jaw has broken and degenerated to the point that not even my ENT specialist feels confident in doing the jaw replacement surgery. So now I have to wait on the VA to locate a new specialist. And in the mean time I will be getting a new feeding tube and an aggresive round of antibiotics along with HBO.

Debi16043's picture
Debi16043
Posts: 49
Joined: Aug 2011

I had this surgery June 15 this year. I had all my teeth removed, implants put in, cand leg bone removed to make me a new aw bone and a skin graft plus 6 weeks of radiation treatment. I'm back to walking 3 miles a day and riding my bike. I don't worry at all about it coming back we are all only on this earth a short time and I put all my trust in god and his will be done, whether he allows me a healing or not, his will be done. I would be glad to answer any of your questions. It was tough but doable.

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

So very true, we are all going to die someday I just put it into the hands of my Lord know that nothing can happen to me without Him knowing it first, and if it is his will then it is my will as well.

PS: Welcome to H&N on CSN

God bless
Hondo

sweetgammy's picture
sweetgammy
Posts: 20
Joined: Jul 2011

Hi! I can't believe how successful this surgery was for you! Can I ask where you had the surgery and what doctor performed it? I understand that the success rate is very low for someone who has been doubly radiated because of a lack of a ggod blood supply.that leaves one with no bottom jaw and using a voice box! Please advise! and thanks!

MJ70
Posts: 65
Joined: Nov 2010

I had my lower left mandible replaced with my right fibula three years ago.. Radiation destoyed my circulation in the bone and i had about one month before it would of broken...ouch.....If you have to have this done to replace the pain its a no brainer..Took about 12 hours ...my family were the only ones that knew that and of course all the Medical staff who were great.... these are alot more common than most know. ..went in a 7am and woke up at 7.30 pm ,,spent 6 days in hospital...honestly they went so fast it seemed like just a few days..to me it was pretty painless...never miss the fibula. I was walking two days later in a walking boot...they call it free fibula flap surgery.. caused by osteoradionecrosis of the mandible Of course the mandible nerve and fibula nerves do not match but they always try and you have some numbness to deal with but that becomes a new normal.. Had some soreness near my ankle...Had it done at OSHU in Portland Oregon its a positive for me and hopefully for you if you go that way Mel

sweetgammy's picture
sweetgammy
Posts: 20
Joined: Jul 2011

reading this has definitely given me courage and hope. Roger Ebert (the movie critic) and I have the same surgeon here in chicago. His sugery was not successful and he was left with no face at the bottom and is using a computerized voice box. they could not get a good bloof supply.that is my worry! I keep putting it off and am very worried about waiting too long but I am so fearful of the surgery and so sick of hospitals! Please give me some more encouraging words if you don't mind! I'm so terrifed of waking up and having them tell me that it didn't work! or...waiting so long that the surgery is eaven more difficulat and I kill my slim chances of it working because of the double radiation. Am thinking about going to MD Anderson in Houston. What do you think?

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

I'm not sure you can extrapolate from Roger Ebert's results to your situation. I've read that Roger had other rejection issues, and I am not sure at all that lack of blood supply was what created the problem for him. In the case of my large forearm graft, and I believe in fibula grafts, the blood flow is established from the carotid artery, not from some small mandibular artery that is in the previously radiated field. The carotid artery is huge, not subject to constriction down to the size to create poor flow. These are all things to disuss, of course, with the guy you want to do the surgery.

Don't cross this bridge untill you've been properly taught by the expert! MD Anderson is obviously a fine institution, and they'd do a great job for you. But this is a case where there are many options, many of which may be more convenient for you.

Best regards.
Pat

Debi16043's picture
Debi16043
Posts: 49
Joined: Aug 2011

My experience with MD Anderson was wonderful. My surgeon was dr Lewis, my plastic surgeon was dr. Garvey and my dental was dr. Jacobs. They worked as a team and did a good job. I have some numbness in jaw and chin and also near ankle where they took out bone and skin.

Debi16043's picture
Debi16043
Posts: 49
Joined: Aug 2011

My experience with MD Anderson was wonderful. My surgeon was dr Lewis, my plastic surgeon was dr. Garvey and my dental was dr. Jacobs. They worked as a team and did a good job. I have some numbness in jaw and chin and also near ankle where they took out bone and skin.

Debi16043's picture
Debi16043
Posts: 49
Joined: Aug 2011

I talked to yoy earlier about having your mandible replaced and was just wondering if youve had it done yet and how you are making it.

sweetgammy's picture
sweetgammy
Posts: 20
Joined: Jul 2011

reading this has definitely given me courage and hope. Roger Ebert (the movie critic) and I have the same surgeon here in chicago. His sugery was not successful and he was left with no face at the bottom and is using a computerized voice box. they could not get a good bloof supply.that is my worry! I keep putting it off and am very worried about waiting too long but I am so fearful of the surgery and so sick of hospitals! Please give me some more encouraging words if you don't mind! I'm so terrifed of waking up and having them tell me that it didn't work! or...waiting so long that the surgery is eaven more difficulat and I kill my slim chances of it working because of the double radiation. Am thinking about going to MD Anderson in Houston. What do you think?

ckjaw
Posts: 3
Joined: Jan 2012

can you let me know more details how your surgery and after the surgery.
dr. surgery from the chin or inside the mouth.
how soon you get well.
you went through the proceedure and can you give some advice

Mikemetz's picture
Mikemetz
Posts: 353
Joined: Nov 2011

I was told last week that it is almost certain that I'll need my lower left jaw reconstructed. I have a CT scan this week that the doctor thinks will seal the deal on needing that procedure. He spoke as if the scan was the first step in planning for the procedure--not being another part of the diagnosis.

I understand the steps in the process and know what they will do while I'm on the table. What I don't have is a good picture of what happens once I leave the hospital. How long for a functional recovery (like going back to work) and how long to a "full" recovery (Getting back as much as I'll get back)? I know there are a lot of "ifs" in this scenario, but my wife and I are just trying to plan ahead as much as we can at this time.

Mikemetz's picture
Mikemetz
Posts: 353
Joined: Nov 2011

During a long meeting with a different oral surgeon, it was determined that the first step would be a debridement, not a reconstruction/resectioning of my left mandible. I know that sounds like good news, but I was also told that this procedure has a moderate failure rate, and I could still be looking at the more radical procedure down the line. Does anyone have anything they could tell me about trying the debridement first? How long did it take to recover from it, and how long does it take until they know if it has worked?

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

I've done a fair amount of reading, as I'm perceived as being high risk to need this in the future. I'm going to PM you also, but can I ask for sake of this discussion if they are talking about HBO now in advance of your debridement, or not? It is going to take quite a bit of time, one way of the other. Bone heals very slowly, under the best of circumstances. Debridement just means to clean up. So their plan is to clean up, then watch for weeks and months to see if you will heal.

If you don't, theyll move on to the full replacement. My general impression of all things medical is that if there is any way to get by without a full-court press treatment, that is always the way to start. There isn't a huge safety net under you with this situation. Its not like you just get an overdo or two if this fails, so I'd err on the side of conservative intervention.

Pat

Mikemetz's picture
Mikemetz
Posts: 353
Joined: Nov 2011

I had 30 HBOs before a tooth extraction last October, and 10 more after. I was told then that 40 was a "lifetime dose," but the oral surgeon is now saying that I should have 10 more after the debridement, to help with that healing. So, apparently, I am now in my second lifetime! I do understand that the debridement is the (much) more conservative option at this time, and from what I've heard and read about the reconstructive surgery, I can only hope that the debridement works. It will cost me another tooth, and put me one step closer to a lower denture, but given the only other option, I can accept that.

Good luck with your situation and let's stay in touch.

Mike

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

I think can be used quite a bit more often than this. It is recommended if any high risk proceedure is done more than three years after first HBO exposure, because the effect is not permanent. I had an article saved which looked at all of this on issues of debridement and reconstruction. Let me see if I can find it and I'll send it to you. It may take some time cause I'm disorganized right now.

Also, ratface has a great collection of HBO articcles, which he sent to me a while back. They are very hard to cut and paste, but I'll try to get you those as well. If I fail, youcould PM him and ask. He'a around often.

Best to you.

gms425
Posts: 4
Joined: Feb 2012

Hello, I had ACC that started in my mandible and had what was supposed to be my only surgery almost 2 years ago. They removed almost my entire mandible and re-built it with the bone from my left leg. After a week I went home and 2 weeks later was back in the hospital to start 9 months in and out of the hospital and 3 more surgeries.

In the end, they had to remove everything and leave me with no jawbone or lower teeth. I can only open my mouth about half an inch and can never eat solid foods again. I can hardly move my neck from scar tissue and the radiation.

I had everything done at Rush in Chicago and had the best doctors in the country but all attempts to re-build failed. I would kill to be able to eat again but I'm not sure it would be worth the risk for anyone to go through this surgery.

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Hi gms425, I sent you a private message also. I saw you had your surgery in Chicago. I live outside Chicago, in suburban Huntley. I had my surgery at Loyola. It sounds like you have been through quite a lot. Did you have issues with blood supply to rebuilt jaw ?

gms425
Posts: 4
Joined: Feb 2012

Yes, the blood supply to the flap failed and everything died. They had to do another flap from a muscle in my belly but no jawbone replacement.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I have pretty much the same story as gms425. I had my surgery June 24th last year. The bone didn't take so they removed that. A little later, one of the screws from the titanium plate started working loose so they had to take the plate out. I am left with a swinging half jaw and little prospects of ever eating food again. Anyone who is thinking about the surgery just realize that it doesn't always work and be prepared for that eventuality. I wasn't.

gms425
Posts: 4
Joined: Feb 2012

George_Baltimore, sorry to hear that you experienced the same thing as I did. Dont let it get you down though. At least we are alive. It certainly could have worked out worse for us both. I can never eat solids again but I am finding different things every day to "eat". My most recent thing is peanut butter. Even though you cant eat, you can get to taste things. I know you probably cant taste much but it is slowly coming back. seems like the more I taste things the better it gets.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Hi GMS, Some days, I can't stop crying. Other days,I see people that are worse off and I realize how lucky I've been in my life. At this point, I would be happy to be able to swallow one of my Mexican Coffees. Before the surgery, I was being dilated just about every month to keep the esophogeal stricture open. I could swallow food with the help of a swig of milk. For about six months after the reconstruction surgery, I was only dilated once and I am now paying the price for it. The stricture is not staying open very long after the dilation. It is getting better (I think). My doc was able to partially use a 60 to get me open the last time. I have another dilation scheduled in two days. Maybe this will be the time that we break through all the way and stay open for a while. I'm keeping my fingers crossed.

Unfortunately, I never lost my taste buds stretching all the way back to 2004. It may have been easier if I had. I'm glad to hear that you are enjoying the tasting the peanut butter. A couple weeks ago, I put a peanut in my mouth and enjoyed the salt and flavor so I know what you mean. Take care and good luck!

gms425
Posts: 4
Joined: Feb 2012

George_Baltimore, I was once in the mental condition that you seem to be in. I hope you are on anti-depressants. If not, please talk to your doctor about it. I fought it for a long time but finally gave in and I cant tell you the difference it made. Als, I found a cancer support group that has helped me a bunch. Between the two, it has probably saved mu life. I dont mean to tell you that I never cry or get depressed about my situation but it sure does make things easier. If I can figure out how to send you a private msg I will give you my email address.

Larryowens
Posts: 4
Joined: Apr 2012

I have been reading on this site for the last month and find it reassuring and heart breaking at the same time. I am lucky to survive as well as I have.

I had tonsile cancer 11 years ago, neck dissection and 40 radiation treatments to the neck. I have had the jaw lock ups and use botox to relieve that.

Recently I have had an infection in the left jaw and it won't go away. I now have bone exposure in my cheek low and away from the gum line. I know this all sounds familure.

I will go in for jaw bone surgery on May 2nd. I still do not know what extent the removal will be. I am optomistic but realistic at the same time. Thank you all for sharing your experiences. It is comforting to know I am not alone...Larry

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

We tend to collect groups of people at this board that have had less than perfect results. Because of the effect this has on posting, you would be tempted to think that this surgery is very high risk for failure. It is not. It is true that failures which result from this surgery are devastating, but the overall incidence of failure is actually quite low. A question for you, have you had HBO treatments for this area of bone, or conservative surgery, like debridement? You are definitely not alone. With time, somewhere around 10% of us get this type of complication, and your radiation was a fairly long time ago now. I hope things go well for you.

Pat

Mikemetz's picture
Mikemetz
Posts: 353
Joined: Nov 2011

Pat,

I have a debridement of my left mandible in two days. I am a lot less worried about having this done than I am about it not working--and then I'm looking at a resecting. I've been told or read that there is only a 50% success rate on debridement--another reason for my worry. It sounds like you have other information on that--if so, where did you find it, and what does it say? Also, my docs say it will take 2-3 months to know for sure if the debridement has worked. Is that right? I'm sure I'll have plenty of signs before then, but it would be nice to know what kind of timeline I'll be on after the procedure.

Thanks for any info you can send my way.

Mike

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

I was thinking about you as I reread this thread. I'm hoping things go well for you this week. My understanding of how this works is the same as what you've written above. It is going to take some time to know how things heal. You know, when I had a molar pulled a few years back (I was getting HBO at the time), to my memory it took about six months to completely heal. That is judging from discomfort and how things felt when I probed them with my tongue. This was way longer than the ENT onc and dentist watched me heal, however. A trained observer should be able to tell you you're healing ok with a couple of weeks. This will be just by watching for classic wound healing signs, like appearance of granulation tissue.

Be well.

Mikemetz's picture
Mikemetz
Posts: 353
Joined: Nov 2011

There are so many times during treatments for HNC that we just have to wait and see how things will turn out. I had my debridement today and all signs are that it went well--no complications and no surprises. A good start, but still a long way to go until we know if it did the trick in healing my ORN. And as you say, I'll detect the signs well before the docs make their determinations. Knowing what comes next if this doesn't work, I can tell you I'm watching for those signs very nervously, but with cautious optimism--like so many others on this site do every day and week. Tomorrow, it's back to start 10 more HBOs, after thinking I'd never see the inside of one of those chambers again.

Mike

ouzo9911
Posts: 1
Joined: Sep 2014

Hello, i was never part of any support groups or forums so did not have a clue how many people with simillar problem is out there. Long story short, my father is 56 and had neck/top of the tounge cancer. He finished chemo/radiation 5 years ago. Since then there is endless problems and proceedures. First few of the back teeth had to be pulled out and with that they 'accidentally' pulled out piece of a bone. That left him with constant infections and a month back the jaw snapped and he had to have half of the lower jaw removed. After consulting several surgeons they do not recomend the reconstruction as the rest of the bone left is not strong enough to support replacement. So the half of the jaw is just left hanging. He did not have a full night sleep since the opp, can't eat, when he talks or does anything he needs to hold it in place. Does anyone has any experience with external support (elastic bands, tape?) or anything that could help or make the day more bareable? Any good medical centers or surgeons in Europe? I don't know anymore where to turn, who to ask. It kills me seing him like this. Please help...

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

My best friend's father (probably in late 70's early 80's) just had the surgery. I know thje logistics were tough because they had to drive several fours to the HBO chamber. They just recently (apx month ago) completed the surgery and it went great and two weeks ahead of schedule he is playing golf.

Good luck with it and here is at least one gret success story.

Denny

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