Hi all, this is my first post so forgive me.

My mother is scheduled to have jaw replacement surgery in a few weeks. This stems from tonsil cancer and complication from radiation. She is on a feeding tube and is unable to open her mouth. She did have some physical therpy and that seemed to help.

I was wondering if anyone has had this surgery? When? Where? Recovery? How are you doing today?

Tons and tons of questions as you probably have all had.

Thanks

There are a few here who have had the same surgery. It's a big surgery, and some have come through okay, and some had a really hard time (Christine) but are still around and kicking.

I'll let them answer your questions. best of luck...

Welcome to OCF, RBH! You have come to the right place to get assistance with your concerns. Here we can help by giving you info the doctors arent able to, we speak from the patients point of view.

Ok so your mother has trismus (limited jaw opening) and now needs to have her jaw removed (mandibulectomy). Why does she need this done? Did the jawbone die (osteoradionecrosis)? How much of her jaw is being removed? What will the doctor be using to replace the bone they remove? Has she done hyperbaric oxygen treatments (HBO) or have they been suggested? All these questions tell me how involved this is and will help me to help you.

I also have trismus, a feeding tube and have gone thru the mandibulectomy. Mine was due to having oral cancer invade my jawbone. It was the left lower jaw which was removed. I had many complications (thats just how things go with me) so it was a very long recovery. I am doing very well even with a few limitations which will always be there.

What I have seen most often with patients who have to have their jaw removed is they are hospitalized for about 2 weeks. The first week they usually are in ICU. It is usually a 10 hour surgery, it can be up to 14 hours for some. The first month is difficult for most. If a piece of the leg is used the patient may need physical therapy to return to walking normally. The mandibulectomy is a very intricate surgery and it can have a long recovery. While its not easy, it can be done and most patients will look the same with only a very slight difference in appearance afterwards. There is usually swelling which can take a couple months to go down. It will take a full year to completely go away and until any reconstructive surgeries can be done.

Please feel free to ask questions and I will be happy to help you with as much info and support as I can.

Best wishes!

Thanks Christine,

My mother has been on a feeding tube for about a year. She was doing really well after radiation and then there was a sudden loss of weight and stiffen of the jaw. She did a number of treatments in the hyperbaric chamber which didn't seem to help.

This past September she had a surgery to remove scar tissue build up in the area of the both the left and right sides of the jaw. Removal of this was supposed to help with the opening. The doctor was able to go through the mouth on the left side but needed to cut through the neck to get to the right side. She has also done a bunch of physical therapy for shallow and jaw opening with limited progress. Needless to say this was not successful.

In the last few weeks an infection has become apparent and the right jaw bone is dead. The jaw bone is now coming through the skin and is exposed. The doctor said he has never seem this, bone being exposed through the skin. She is going to have surgery and they will use the leg bone to replace the portion of the jaw. I am not sur ehow much of the bone is dead but I believe it extends a good way back.

We have been told that is should be an 8-10 hour surgery and expect to be in the hospital for at least 6 days.

Are you still on the feeding tube?

Thanks so much!

Welcome to OCF - the best source of information on oral cancer. Is your mother being treated at a Comprehensive Cancer Center (CCC)? They offer a team approach to treatment. As you've seen, oral cancer is a tough cancer and many patients experience complications so it is best to seek treatment at a CCC where they have treatment many OC patients. Has she been for a 2nd opinion? Also a good thing to do. I wish the best for your mother.

Welcome to OCF. Make sure your Mom doesn't have disease in her jawbone, <ine was removed in Pittsburgh to replace it by making one out of titanium or something. @ weeks later I was tolds if they replace it I would be back in a couple of weeks to have it removed again. It seems my jawbone was full of MERSA and would continually worsen and I would end up without a jawbone again. I asked the Dr if ZI could live with just this feeding tube. He said I could but really had no choice unless I wanted to keep going thru surgeries;' I chose the feeding tube. It's been several months of me and the canned food, but I am alive and doing as much as possible to be normal. It's a rough life hbut can be done. Just be sure of her options and what is going on.. Good luck to your Mother , but most of all be sure. I think I would have kept the diseased jawbone now.

Thanks for the responses and sorry for my delay.

My mom had her surgery last week and they were unable to replace the jaw bone with bone from the leg because the extensiveness of the decay in the jaw bone did not allow for a new bone to be attached. The back 4 teeth and the remainder of the lower jaw on the right side was removed. Fatty tissue from the thigh was inserted into this void where the jaw once was. She is recovering well from the surgery and the docators are happy with her progress. Granted her lower right jaw is gone but the doctors feel that she will be able to open her mouth and begin eating, on one side, again in several months. Therpy is to begin in six weeks and hopefully at some in the near future she will be able to get rid of the feeding tube. This has been a long two years but I think that we may have reached the crest and that things are beginning to progress in a positive direction. Its a long battle.

Thanks

So sorry to hear your mother had some difficulties with the mandibuectomy. It is not an easy surgery to get thru. Ive had it done also almost 4 years ago. Im also missing half of my lower jaw too. There are far worse things in life than this! I hope your mother is in good spirits and can see how fortunate she is to have gotten thru this major surgery.

Please feel free to ask any questions you may have. Its one long road to recovery. It took me a year to bounce back but I had many complications that not everyone goes thru. If your mother will be having any reconstructive surgeries down the road, the docs will probably make her wait for at least 1 year after the surgery. Heeling takes a full year for this operation.

Best wishes with your mothers recovery.

June 26th will be six weeks since the surgery and the doctors and plastic surgeon are extremely happy with her progress and healing of the area. My mom is in good spirits with the good progress reports and that helps here a lot. She feels that she can open her mouth more at this point and is looking forward to PT.

Thanks for you replies and insight it is very helpful and I will update once PT is underway.

Yeah! So lad to hear she's doing well!