Cancer Survivors Network

Sorry for not getting back sooner, but things have been hectic. My brother also was going for acupuncture as well as the botax injections but they sooner or later will not work as your system gets used to it I guess. I heard that the hyperbarric oxygen treatment works and now he is looking for places that do it,. Its funny Sloan Kettering treated him for his head and neck cancer and my brohter received the most radiation that they can give a human being, well now they are finding out that there are complications such as the one he is dealing with now from this extent of treatment. Sometimes he would recieve radiation like three times a day. Anyway have you tried hyperbarric treatment at all? you can email me at donnatuytjens@yahoo.com

thanks

I was treated with chemo and radiation for SCC of right tonsil and throat in 2001. Have been cancer free since. Radiation leaves a nasty trail. Along with usual side effects such as extremely dry mouth, tooth problems, I started experiencing extreme cramping in my jaw. My oncologist prescribed Quinine capsules which helped immensely. I have been taking them since with good results. I do have limited ability to open my mouth fully. Quinine was taken off the market last year, I think, except for treatment of malaria. It was also used for leg cramps as well. He prescribes Qualaquin now, which is a form of quinine. I take 324mg three times a day with good results. Without it, my jaw locks up and I have to use both hands to open my mouth. It has been a life saver for me.

First welcome here to CSN, and second thanks for the tip about Quinine I will look in to it.

Take care and please plan to stay

Were you able to get anymore more movements in the Jaw from the HBO treatments? My Jaw will only open ½ inch and I think MAV899 brother is having the same problems, what I am afraid of is that they will break the Jaw bone trying to open my mouth and I will have a lot more problems and side affects to deal with.

Its been almost a year since i had radiation theraphy for Nasopharynx carcinoma. I haven't been able open my jaw more than 1/2 inch same as MONDO. I have been having slight cramps on my jaw muscles since abt 6 months. About two months back it got worst and the cramps got stronger on the left jaw muscles and since last week even the right jaw muscles. Now if the sometimes if the cramps start i am not able to open my jaws at all. These cramps are so strong that sometimes i think my gums might bleed. I dont want to loose my teeth at a young age and want to find some kind of solution. My doctors first told me that they will inject brotox but today they told me it will be risky. Has anyone tried brotox injections and how effective is it and is it really a risk and will i be able to chew or eat normally after that.

I too have the cramping problems; it starts right under the jaw bone and gets so bad I can’t do anything. This is what I have found out; the reason for the pain is because there is a nerve that passages right there, when I tried to open the jaw too far it affects the nerve and I start with the pain. Do you have any problems yet with numbness in the tongue, I wake up sometimes and can’t speak because of the numbness, it only last for a little while but worries me if there are any long term affects.

If you mind my e-mail address is on my Post I would like to stay in contact with you as we seam to have the same side affects after treatment.

Take care and God bless you

Sorry i didn't follow up with this list for sometime now. Well my problems with the jaw muscle got worst and just last week i was injected with Bortox so its little relaxed now. But this is for sure not a permanent treatment. I am also trying to find out which exercises could help better this situation. Last 2 month i tried acupunture and also physiotherapy but still they didnt help a bit. As you mentionend when i try to open my jaw more than 2 cms it starts to cramp. I believe now that it should be some nerve which leads to this problem. But what i dont understand is this problem didn't show up immediately afer radiation but after around 10-12 months.

Surely we will keep in touch by email too.

Take care.

I will PM you my e-mail address

Did you also have jaw muscle cramps ? Also did you also have problems opening jaw ? If yes did it get better and normal after HBO treatments. How expensive is the HBO treatment in America ? Thanks for this valuable information.

I too would be interested if these issues are leading to another bout. My husband was diagnosed with SCC in April 08. He is currently doing the hyperbaric treatments and is on day 11 of 20 after which they intend to pull teeth and he also will endure 10 more treatments. We get mixed signals if the hyperbaric will help but we have decided at least we will know if it doesn't work and can never say we didn't try. He had a PET just after the holidays which was clean but that is when this jawbone issue was discovered. He now continues to have a nagging cough especially at night. Just don't want to overlook something nor panic about nothing!

You should ask your Head and Neck surgeon to check out if you have osteo-radio-necrosist of the Jaw Bone...I did after five years......In our terms it means the radiation killed the circulation of the jaw bone..Its a big deal and needs a surgeon who does this type of surgery...I had my jaw bone replaced with my fibula from right leg.. fibulas are like tonsils or appendics .... we don't need them..I put mine off as long as i could but had to have it done after it got infected.. took twelve hours in the OR and six days in the Hospital... Things are great now but you should check it out...Mel

I had radiation to my jaw six years ago and have been diagnosed with osteo-radio-necrosis. Apparently there is a fistula from the point of the damaged jaw bone which drains through an opening under my chin. I had the cancer surgery at the Mayo Hospital and they didn't recommend radiation but the therapist I went to see prior to the operation convinced my wife and I that it would be a good precaution. Unfortunately the outcome wasn't good. My doctors at Mayo want me to have the replacement surgery but frankly I have been putting it off for five years as the thought of being on a feeding tube again depresses me! My questions for you are: Did you have a series of infections or just one serious one? My doctor's have told me that it would be the same procedure and hospital time that you described. What I haven't heard is how the recovery goes. How long were you on the feeding tube and what else is involved in the recovery? Thanks in advance for your help.
Tom

I have squamous cell carcinoma on my lower jaw bone and the doctor will do the fibula flap surgery soon, worried about recovery time...

Hello! Saw your comment on your surgery and was wondering how long it took for recovery. Looks like I will have the same type of surgery!

I have not checked this discussion board for some time but decided to today...Saw your post dated today...Good timing ...
The recovery time for me was the six days in the Hospital and a few more days at home with my feeding tube through my nose which kept me home for obvious reasons.. I think it was a total of about 10 days before they took out the feeding tube on my first appt..... The time in the Hospital went so fast and i was in a walking boot which P.T. had me walking the next day... Besides being sore it was pretty painless for me... What surprised me was my eating after five years of finally getting back to almost normal abilities...I found it much harder to eat again and swallow like i had before....seems like i have to rinse my food down more than i use to...But that has become a new normal so just another day enjoying life ..I met a friend through a friend who had scc of the tongue on the same side as you at the same time i did seven years ago who is having the same osteo radio necrosis of the lower right mandible as you are.. Mine was the left side two years ago.. He is taking Hyper baric treatments now..and has lost most of his teeth on that side but might save his jaw bone...My Surgeons said they hooked up a good nerve but a mandible nerve and a fibula nerve aren't quite the same and it has not worked....some numbness on my left side...like coming out of the dentist but not nearly as bad...Walking on a leg with no fibula is also not a problem for me.. If it turns out like mine you will do just fine...Good Luck

Hi! I have just joined this discussion board. I had no idea it existed. My surgeon wants to do a jawbone replacement. I am scared to death. Please...I need as much information as I can get aboutit! since you have had it done, please contact me by e-mail and share with me any knowledge you have. marianne2428@yahoo.com Thanks!!!!!

How do you find a surgeon whho is the best at jawbone replacement???????

Why do they want to replace your Jaw bone, is it damaged or infected. Please get a second opinion and from a major cancer institution before you make any discussion. I too have major Jaw problems but the last thing I will do is to replace my Jaw.

PS: Welcome to the family here on CSN.

You should ask your Head and Neck surgeon to check out if you have osteo-radio-necrosist of the Jaw Bone...I did after five years......In our terms it means the radiation killed the circulation of the jaw bone..Its a big deal and needs a surgeon who does this type of surgery...I had my jaw bone replaced with my fibula from right leg.. fibulas are like tonsils or appendics .... we don't need them..I put mine off as long as i could but had to have it done after it got infected.. took twelve hours in the OR and six days in the Hospital... Things are great now but you should check it out...Mel

I never had jaw problems, my mouth fully opens with no pain, my hyperbaric was for tooth extraction, however last Sunday I was eating some pizza and one of my front bottom teeth just broke off, no pain no gum bleeding, it just broke off at the gumline.

Keep exercising the Jaw everyday is the only way to keep it working. John 3 fingers is great I can’t get one finger in mine but I am working on it everyday

stretching is key. Goto to the physical therapist and they will provide techniques to stretch and massage and push they body fluids away from the tightness areas. My ENT also advised me to to stretching exercise often. One good tip was to do a set of stretching every time you see a commercial when you are watching tv.

@NPCPaul: do you mean streaching of the jaw ? Each time i try it the cramps get worser and the pain too.

This is my third year with the cramps and i still cant find any proper solution. The docs dont have a proper explanation why these cramps show up.

i am still in search of a solution which could solve these cramps.

Yes I know about the cramps I too get them if I overdo it, or reach just one place when trying to stretch. The key for me it to go easy and remember everything there is like bacon if you pull it too had it will brake and become tuffer.

Do you use a jaw device to work with if so what one are you using. I did the threbite and now I am using a Dynasplint, the Dynasplint is a lot easier to use but cost a lot.

Wishing you well
Hondo

I have ORN in my left jaw, the radiation site. I have had one tooth extracted and have completed 40 hyperbaric oxygen treatments. I have a constant pain level of 2/3, which spikes to 6/7 sometimes. I have experienced some benefits from the HBO (e.g. the tissue in that area is softer), but the doctor is still seeing some dead bone in the socket of the extracted tooth. She is giving me two more weeks to see if this turns around, and if not, will recommend either scraping the dead bone until live tissue is found, or a jaw resectioning. Can any of you tell me what your doctor told you about if and when to do the oral surgery? I read that some of you waited several years to get it done, but some had it done right away. Any advice, or things I should ask my doctor about?
Mike