I was so happy to discover that there was a support group for people with our somewhat unique ailments. I am a 56 year old woman, two years out from the diagnosis of squamous cell carcinoma, stage I, of the maxillary area; several teeth; a large section in my palate;& the sinus cavity.I had surgery in New Orleans 2 weeks before Katrina, and that was followed with 5 weeks of daily radiation.Because resources were in extremely short supply due to the hurricane, I did not receive vital P.T. during the window of opportunity when the muscles would have responded. As a result, my muscles are very tight, and I can only open my mouth 13 cm., (less than 1/2 of normal).Eating is arduous and slow, and the food sometimes gets stuck mid-way down. To add insult to injury, the radiation fried my salivary glands, and come next week, I will have had 3 root canals in a 6-week period. It seems unfair that the problem is medically-based, but because it's in the mouth, medical insurance does not cover it. Financially, it's a real hardship.
This is not a doom and gloom story, however. My scans are looking great, and I just hope they stay that way. I know that I have alot to be thankful for, but sometimes I just don't feel too thankful.Those are my inner thoughts that I don't share with family or friends.Do others struggle with this?
I hope to hear from you, and thank you for allowing me to vent.

Dear Splenda,

I live in Louisiana and have a son who lives in Mandeville....AND I had similar surgery to yours....maxillectomy and partial palatectomy...in Shreveport.

I am sorry to hear about your jaw restriction. Do you continue to work on the opening? My dr. almost waited to late to have me begin to exercise my jaw, and now I work on it many times a day. Do you a Thera-bite device?

I am having problems with my insurance company also, refusing to cover a problem that is the result of my neck dissection. I am determined to keep after them, however.

I imagine that you had similar problems to me in getting your prosthodontic care covered as a medical expense rather than a dental one.

Where was your surgery done? Do you wear an obturator? Is it hard to insert, with your difficulty opening your mouth? I can sympathize with you on getting anything into your mouth. At first, I could not even insert a knife-blade. I'm sorry you are stuck with this problem, but I hope that you will continue to try to stretch the opening.

With a Stage 1 SCC, why did they recommend radiation? I had clear margins and negative neck nodes, so my surgeon did not recommend radiation, and it has bothered me a little not to have had it.

I'm really sorry to hear about your dental problems. And with the difficulty you have opening your mouth, those procedures must have been quite difficult. I also had a root canal after my surgery, for a different reason, and it was suggested that I take a sleeping pill....Halcyon....before the procedure. I have no memory of that procedure! It was great!

I am almost two years out from my diagn. and surgery, which was Jan. 4, 2006. I have had a clear PET/CT at one year, and I have another scheduled for late Nov. in preparation for my 2-year checkup.

I am doing quite well, returning to everything I was doing before...singing, dancing, teaching...though I hate this appliance. My surgeon discussed the possibility of reconstructive surgery, but at 64 I am wondering if I need to spend more time in recovery, or if I should simply give thanks for my good result and spend the time living it up. I plan to have consult the doctors at M.D.Anderson in Houston in a few weeks, and if they do not encourage the surgery, I'll stop considering it.

Have you considered reconstruction? This surgery involves removal of the fibula from the leg, along with other tissue and vessels, and installing them into the mouth. It's a long process. I would love to snap my fingers and be fixed up, but I don't think it is that easy!

I hope you'll write back. There are not many on this wonderful forum with our particular problem.

--Colleen

Splenda...I do wish I had the answers you are seeking...Good luck to you...I'm posting so that your thread will be 'bumped' up, in hopes that someone can offer help to you...

Lois & Buzz in NC