I agree Jim. For the first time in ages I had a marshmellow last night. It took forever to swallow. Anybody else would have been able to eat half the bag by the time I had one.

It sux.

Karen

Pat,

Clark had jaw reconstruction because he had numerous post radiation infections that were treated by the ENT. Eventually he ended up with osteoradionecrosis of the jaw--the jaw bone died. He has been seeing the PS and the OralMax for the last 5 months. He still has some issues with healing. Very common with radiated tissue.

I remember after the surgery to remove the cancer (11/07), the PS told us that if my husband needed additional reconstruction, he wouldn't consider it until the swelling was down.

Good luck and keep us informed on your progress.

Anita

Hello All, this is Pat's sister. I am an RN and was with her through most of her treatment. There are a lot of things that are left out here because so much happened that we couldn't possibly put it all in here but one thing about all this follow up is that the rad dr told us we would be needing to see a head & neck surgeon. Cooper does not have one so the chemo office decided to see if the ENT could do whatever had to be done. Apparently NOT. That is where the whole idea of going to Newark came from so we could see Head/Neck.
The plastic surgeon was very helpful but he really needs to see the final CT before he can have an idea what was to be done. We never get much information from the chemo office. We were rather surprised to learn bone would have to be taken from her to do a graft, we thought it would be the piece of mesh or metal we saw in the book about oral cancer.
Hopefully I will be able to make it back to NJ next week to go to the plastic surgeon again and then we can start looking more into the other hospitals some of you mentioned earlier in these posts.
Thanks everyone for the information and support.

Roseanne,

In Clark's jaw recon, they used a titanium bar--one end was attached to his jaw next to his ear, the other end attached to his chin. The fibular bone graft is positioned under the bar and anchored to it. The fibula was in 3 one-inch pieces (to follow the curve of his jaw), connected to each other by blood vessels and to the flap of skin that was removed from his calf.

There are others on this site who have had jaw recons that may have been done differently.

Anita

The image of eating a marshmallow gave me the only laugh I had today. I can not even imagine eating a marshmallow (unless we're talking a mini) Anita, I've been following Clark's progress every now and then but have to admit that I've been so depressed for the past couple weeks, I haven't followed anything. I still have lots of mouth sores and there are always changes happening in my mouth that I don't understand. I didn't know this could go on and on. The ENT guy must have known this; seems he was a bit premature in writing me off.
I do use an infant toothbrush and brush my tongue and my gums. I follow up with a waterpik which seems to catch more debris than the toothbrush. I'll look into Biotene but my mouth is very sensitive to a lot of pastes. Right now I'm using Tea tree oil with Fennel; can't use any mints.
Thanks again!
Pat