I am half way the the process of having my left mandible replaced due to ORN osteoradionecrosis. I am having the entire left side replaced from the angle of the jaw to the midline or center of the chin. I would like to hear of others experiences with rhBMP bone grafts. which is what I have elected to do. I would like to hear from others who have had the fibula free flap done and eachs opinion of their own outcome. I am wondering if I missed any of the negatives with the BMP graft. and other issues to look out for. Thanks, Dwayne

Dwayne, welcome to OCF. There arent alot of members who have had this procedure. Ive had a mendibulectomy with replacing my jawbone with a metal jaw which was removed when my first free flap failed. For me it was a very very long road to getting well. I was in pretty bad shape for the fist 4 months. Around the 9 month point, I started to bounce back. Its been over a year now and I have recently gotten cosmetic reconstructive surgery.

Best of luck to you with everything!!!

Hi, Dwayne,

I don't have any experience with the BMP graft as my husband had the fibular graft last year. It was a big surgery! Most of his discomfort was from the leg which was sore for a few months. He used a walker for about 3 weeks and could not go very far. But by late spring (May), he was on the golf course! The complication Clark had was that the skin from the fibula was very thin and did not hold up at all. The plate came through and he had another skin graft in April. That was very successful. He is having that debulked on Dec. 13th in day surgery. He recently had a panorex of his mouth/jaw and everything looks beautiful! The oral max and plastic were very pleased.

Good luck with your procedure!
Anita

Thanks, Christine and Anita for your input. Christine, How much of your jaw was replaced? I have a metal plate on 1/2 of my jaw now. but when the graft is successful? I have the option of having it removed. The doctor asked what I wanted to do after having the mandiblectimy. He said some people quit at that point and live with just the plate. I told him that we started this with a completed BMP bone graft and dental implants as a goal! but I see how you could decide to stay with just the plate. I apologize but I have to head to work. Try to put some money back in the bank! before the next surg! Thanks, Dwayne

My jawbone from the center of my chin all the way back to the ear has been taken out. Sounds like the same as yours. How long ago did you have this done? Have you done any (HBO) hyperbaric oxygen treatments? Ive done 125 over a few years. The HBO treatments are used to help with osteoradionecrosis.

Hi Dwayne

In April 2008 I had nearly all my lower jaw (mandible) replaced with bone from my hip due to Osteoradionecrosis.

During the first surgery in April 2007 they split my jaw down the centre, and opened my face up like a door to access the tumor on my mobile tongue. I had a tongue flap made from tissue from my thigh. My jaw was joined back together with small screws and plates down the centre. During the surgery there were some teeth damaged either side of the jaw split, but I was sent into radiotherapy like that. Because of the damage from radiotherapy, I've had approx 9 cm of my mandible replaced with bone from my hip, and the tongue flap had to be re-done again, this time with tissue/skin from my hip area also.

Since 2008 I've undergone several operations. Now I have teeth implants and more recently some cosmetic surgery to improve my facial appearance.

I had a PEG tube for 3.4 years and will always have major eating difficulties because I'm not able to move the tongue flap. It's permanently anchored down and also serves as the floor of my mouth.

It's a tough complicated surgery, but if you take it step by step, you will see the light at the end of the tunnel and reach your goals.

Best wishes for your procedure.

Karen

Christine , Karen Yes I have had 65 HBO dives. I had the jaw removed on 6/16/10 and I am to have the rhBMP bone graft done on 12/1/10 coming up.

I have been very fortunate to have felt most of my lesions early to ask my doctor to look at them. Back in 1996 I found some white patches on the left side of my tongue. I went to the doctor at that time. and was told they were Leukeplakia, nothing to worry about. WRONG! well in 2001 I when I would drink a pepsi something would sting on my tongue. Went to my GP and she took one look and said we need to get you to a specialist. SCC slightly invasive in two areas on my tongue. excised and resected a little bit each time as it came back nearby every year to eighteen months. Then in late 2006 found it near the base of tongue. Well now is the time to consider surgery or Radiation. Neither doctor wanted to do his part due to the damage they would do. So we finally decided to due radiation and Chemo in the spring of 2007. Got through that 35 Rad at 70 greys Cisplation and Taxol at the same time. Then in 2008 pains in the jaw on both sides, pull molars, Hbo dives take a year and a half to barely start to heal from pulling teeth when bone splinters start to erupt through the gums. Whats This? Oral surgeon takes a CT scan and tells me your jaw is in worse shape than we thought It will need to be replaced. I said okay can I get one off the back lot of Universal Studios? Left over from the Terminator movies? Thats when he mentions Dr. Marx and his treatment of growing a new Mandible using BMP. So in JUne of this year I went down to Miami to have a plate put in my mandible, The left side cut out and they were going to do a tissue flap. They decided against the tissue flap during the surgery. A month after surgery I wound up with a bad infection in my jaw. It looked like I had a baseball in for a chew. IV anti biotics cleared that up and I am now waiting on December 1st. for the next surgery. I will attempt to keep you all posted on my progress. Thanks, Dwayne Hubbard

Boy do I remember those bone splinters coming thru my gums. The pain from that was awful. It would hurt so bad it brought tears to my eyes on several occassions. But once the splinter was pulled out it was instant relief.

When you have time please add some info to your signature. It helps us to get to know you and answer your questions easier.

I have a couple questions for you. First are you being treated at a cancer center? How old are you? Has your appearance changed drastically from your mandibulectomy? Ive seen some people who look fantastic, cant really tell they have had this done.

I havent heard of anyone here doing reconstruction with the BMP bone graph. Hope to learn alot more about this from you.

My appearance hasn't changed to much. Prior to the mandible resection I had a touch of lymphedema "swelling" on the left side. Well now it is quite pronounced it looks like I have a jowl on the left but not on the right. I've thought about growing a beard later after the surgeries are done but my scraggely beard would probably look worse! At this time I am 48 yo and roughly 170 lbs. went from 204 prior to Rad/Chemo down to 154 after then back up 185 prior to mandiblectomy. so now at 170 or a little more. Probably the best weight for my height. But I like to have a little more on prior to surgery. Which is coming up 12/1/10. Can you copy and paste what my profile looks like on your end?. I will be more than happy to keep all of you informed on the progress of the BMP Graft.

Christine, You mentioned pain with your bone splinters. I was fortunate? enough that the radiation killed a lot of the nerves in my mouth so I didn't have a lot of pain with the exposed or erupting bone. I guess that was a blessing.

Your profile appears the same to you as it does to everyone else. Im asking you to add some details in your signature. Thats what all the info after my name is. You can find this under "My Stuff" tab, then my profile. Type the info in the box on the bottom.

It sounds like you have done very good with your weight. Some people lose way too much and become drastically underweight. Try adding some hi protein powder to your drinks like mix it into a milkshake or juice. That will help you heal faster.

You did luck out with not feeling the bone splinters. It was torture!!!

Christine, It doesn't look like you have had Rad. or Chemo? I didn't have it untill 2007 after 4 or 5 recurrances on the tongue. I have been now 3 1/2 years cancer free!. But I have also had to deal with the "benefits" of radiation ie: ORN and Fungal Infectionssss. Yes there is a lot of esses there. Fungal infections caused me the most pain and did the most damage of all the side effects of Radiation/Chemo. I couldnt maintain the level of care on my teeth due to the pain of the fungal infections. I'm sorry let me quit whining I need to brush teeth and head to bed. I will try to update my info and keep everyone posted on the BMP treatments. And don't be afraid to ask questions. even pointed questions because we can all learn from them. Thanks all. Dwayne