AVW,
Thank you so much for your input. The information that you provided really went a long way towards easing my concerns and fears. There really is no substitute for the experience that someone who has gone down the road before can bring. I see Dr. Marx on November 29th for an intital consultation.

Please give your husband my warmest wishes for continuing his wonderful recovery.

Elisabeth,
Thank you for the information. This board is really a Godsend. The more that I live with this idea of a mandibulectomy and the more I read the stories of the members of this forum the more comfortable I become.

Richard,

Just a few thoughts before your visit with Dr Marx:

1. There may be a long wait in the waiting room. Come prepared with a good book. Last week, we waited for 2 1/2 hours...the longest wait ever. One hour is usual. The volunteer who took us to an exam room apologized for the wait. She said it was because they had a very high proportion of new patients that day and they always take longer. Of course, I don't mind waiting for this reason. I am just happy that they give new patients all the time they need.

2. Don't be alarmed if the waiting room is very full. You aren't waiting for that many patients before you. It seems that most people come with at least one companion and I have seen as many as 4 people waiting with one patient. Also, there are other doctors using this waiting room.

3. Write down every question that comes to mind before your visit, so you don't forget to ask. They are very patient as you check your list to be sure that everything was covered.

Good luck and safe travels!

I can't believe how lucky I am to finally get in contact with others who have gone through reconstructive jaw surgery. On February 7th I celebrated my 8th anniversary of being cancer free. Unfortunately I went ahead and had follow up radiation therapy even though my surgeon at the Mayo Clinic Scottsdale didn't think it was necessary. Unfortunately the treatment resulted in radioneucrosis of the lower right jaw. I have little or no pain but have had a subcrutaneous fistula draining from under my chin . I cover it with a small piece of guaze which collects the drainage. My teeth are not loose, in fact none of my doctors can believe how stable they are considering the amount of deterioration there is of the bone. I have been told by Dr. Hayden at Mayo that it is not a matter of IF the bone will break, it's a matter of WHEN. Like I said that was eight years ago. I did take twenty-one dives but that didn't have any impact. I'm feeling a little pressure now because my only daughter is getting married in September and I dread the fact that I might miss my chance of being father of the bride! So I'm considering going ahead with the surgery in hopes of being back to normal by then, yet some of the accounts I've read today make me think otherwise. Any comments or advice would be greatly appreciated. Please don't hesitate to contact me through my email address which is Thanks in advance, Tom

Tom, have you considered having more HBO? Sometimes it takes more than 21 to heal. The first time I did HBO, my doc kept extending my treatments. I was making progress but very slowly. I think it took me 60 dives before I healed from the surgery for my 2nd round of oral cancer.

Everyone is different with this. I struggled while Ive seen others sail right thru it. A mandibulectomy is a major surgery. It is very delicate with the surgeon connecting teeny tiny blood vessels. I hope you carefully consider all your options. If it were me, I would try more HBO hoping that would help the jaw. If you put off the surgery your jaw will only be in worse shape and harder to fix.

Here is a link that details what I went thru. Just remember not everyone goes thru such difficulties. It was the 3rd time I had cancer in 3 years so my body was not strong going into it.

ChristineB's mandibulectomy

Thanks so much for the information. I just got back from the doctor who thinks we can wait until my daughters wedding is over in September. That took some stress off!

I just had to put in our 2 cents. First, I admire your courage and strength! My husband went through similar treatment for STage IV SCC of Tonsil and was diagnosed with ORN with 9 months after treatment. He was 42 when diagnosed.

He had the jaw resection with flap done on 1/10/12. He had to have 2 docs in the room, one to do the titanium plate and one to do the tissue work.

He had most of his left jaw cut out, replaced by titanium plate and had a section of his chest muscle brought up to cover the titanium plate. The radiation had messed his skin up and he also needed a large piece of chest skin to add to the neck area.

He was in the hospital for one week and was told to take 2 weeks off of work. He had a PICC line and received antibiotic due to pseudomonas and staph infection for weeks. He was on Jevity via a feeding tube for a month or so. They did not wire his jaw shut, but was not allowed anything for 10 days in his mouth.

Today, he is feeding tube free, has 1 week left of antibiotic and has been at work for a few weeks. He is a Psychologist and Professor at Midwestern University. He also uses his voice and would be devastated if anything happened to it. He is almost back to PRE cancer mobility!

In short, I have to say, his story is uplifting. You can follow him here: http://creativepsychological.com/thrivingit/

Best to you and yours!! May you continue to soldier through this. Spend as much time loving, laughing and spending time with that family of yours! They need you as much as you need them!!

Blessings!

Brenda

Wow...this was a tough forum to read. I'm only 9 months from my last treatment and I'm doing ok. Obviously something like this can appear much later after treatment. I'm not sure I'd do what you folks did at my age (63). I hope I don't have to find out.

Tom, excellent news that you can put this off. Im glad that Brenda posted a link to her husbands ordeal with a mandibulectomy. He shows us that some people really are able to get thru this and return back to almost the same life pre-cancer.

bb, if the time would come for you to make this decision, Im sure you would continue thru like we have. I almost didnt go thru with it but my children needed me so I did it for them. There was no choice really, I am their only parent.