Seeking advice

Hi Pwe559 and welcome.  I've not experienced what you have and what is being suggested for you.  I am sure that there are people with a similar journey to you, and many that have had jaw reconstructions that will be along to give advice soon.

Hi Peter, thank you so much for your reply, I am sure that there are people out in the community who are going through or have been through similar.

Cheers

Hi Pwe559

Sorry you're now having to go through this.

I know I've definitely read posts from others with osteoradionecrosis.  If you type osteoradionecrosis into the search bar at the very top of the page all the previous posts will come up.

I do hope you can get some effective treatment to alleviate things for you.

Linda x

Hi

welcome, I have not experienced the same as you, however, I had surgery 2 month ago and have developed Trismus. I have been lucky my speech therapist has given me a Therabite machine, snd it is helping to open my mouth. I would have bought one my Trismus was effecting my life. Try asking if you can have one, it may help you. Febbie 

Good evening Pwe559, i have had three separate operations involving head and neck cancer including part of my tongue also reconstruction of my lower jaw using a bone from my leg, i had no option as the bone was cancerous. This is a big operation but the results are very good and i never get any problems with my new jaw bone, it will involve removing some of your teeth but this depends on how much of the bone is replaced, i had two-thirds of mine replaced so lost all my teeth on the lower set. My mouth does open but not as much as it used to but its a lot more than a tea-spoon which is ok with me due to what i have been through. The surgery will most probably change the shape of your jaw, again depending on how much they remove. It is a scary operation but i found the recovery to be very good and have not had any side affects since i had it done in 2009, if you click on my name it will take you to my profile where i have written a short summary of my cancer journey. Please feel free to ask any questions as it can be a lot to take in, wishing you well, take care.

                                                                                                  Chris 

Hi Chris, thank so much for your reply and for sharing your journey.

I suppose the points which are really scary for me are:

1. my consultant said that he would not have the operation, but then I am left with a really brittle jaw, 

2. my speech and language specialist said that because of the level of scar tissue damage, in my mouth and throat, I could end up with a permanent trachea tube,

3. because the muscles on the right hand side of my jaw are now damaged from the radiotherapy and infection, my mouth may not open any further, even after an operation.

The damaged area of the jaw is approximately 1", but they would have to remove one side from the centre of the chin to the back.

I had to have 10 teeth removed, prior to radiotherapy, so only have teeth at the front.

My consultant obviously has to talk about negative outcomes of the operation. He states you could end up with a permanent limp, due to the bone removal. Did this happen to your self?

He also mentioned that the operation may change the shape of your face.

Lastly, he talked about the recovery time being up to 6 months and possibly longer from work. How long was your recovery time?

Sorry, for all the questions. I hope you don't mind me asking as I am just trying to get a clear picture to make a decision.

Cheers. Paul

Hi Febbie, thank you for your reply. Unfortunately, the Trismus is due to radiotherapy damage and infection, causing the muscles on the right hand side of my jaw to fuse. The Therabite machine would not help. 

Cheers. Paul

Good evening Paul. The big difference with me though is that i had to have it done to remove the tumour. My leg recovered ok and dont walk with a limp although i do get a few twinges in the evening, it also involves skin and tissue grafts as will the new jawbone. Also the shape of my lower jaw/chin is different to what it was as they have to shape the new bone to fit, i believe my muscles were damaged due to radiotherapy so my jaw only opens about half of what it used to. Recovery is an easy six months as you have the leg, jaw and doner sites to heal and recover from so work will not be an option for at least 6 months. I can see why your consultant has said he would not have it done as its a big operation and quite a long recovery period. You have to decide whether the benefits of the operation outweigh not having the operation. I was 49 when i had this operation in 2009 so recovery was a bit easier for me as the older we get the harder it is to recover, it just takes a bit longer. I hope i have managed to answer some of your questions but feel free to re-post if you need further advice, good luck.   

                                                                                        Chris 

Hi Chris, thank you so much for taking the time to reply to my questions and detailing your own journey. Getting as much information as possible will help me make the right decision, when the time comes.

Cheers. Paul

Please let me know the outcome if possible, just take your time and think of the pros and cons, chat soon. 

                                                               Chris