Hi everybody, i am new here ..
I had a operation to remove oral cancer and the jaw bone was replaced with bone from my hip region. I had this operation 5 years and even though i cannot open my jaw very wide, i still have a aching jaw, but i am still experiencing severe pain from my hip and a sharp pulling pain at the side of my tummy.
Some days i cannot put weight on it.

Is this normal, does anybody else have this same problem?
Many thanks

Hi Craig! Welcome to OCF! Ive also had a mandibulectomy but no bone was moved to my jaw. I have trismus as well. I also still have a significant amount of pain every single day in my shoulder, face, jaw and neck areas. I am wondering if this pain you have is something new or if it has been there the whole 5 years? In my opinion, if it is new pain then go get it checked out. If it has always been hurting I would just give a call to your doc and ask if it could be an issue. Good luck!!!

Hi Craig!

Welcome to OCF, glad you found us sorry you had to! It's nice to see a 5 year survivor join the forums, I'm sorry it had to be due to this issue!

Aches and pains are common after a mandiblectomy to be sure, even from the donor site. Sounds like a Psoas Major, one of the three hip flexor muscles, pull or strain to me. These can occur when the muscles are tight and unstretched. I'd see a Physical Therapist about it actually. Stretches and exercises should help muscle loosen up and ease pain.

Quick fact, the hormone response in the brain from physical exercise is as effective as antidepressants at treating depression, it also helps lessen pain due to brain chemistry's affect processing pain signals. You're brain feels more pain in a depressed state. Pain medications on the other hand over time cause depression...do you see the vicious circle opiates can cause which is why they are commonly abused by patients using them to manage chronic pain.


Hope that helps


Eric

Hi, Craig.

All of those anatomical changes are going to speak to you in the language of pain. Dysfunction follows pain and so does a myriad of issues that we'd rather not deal with.

The longer you have been living with these changes, the more time soft tissue and joint changes have to take place. Like Eric, I would suggest going to a skilled manual physical therapist that values exercise as medicine, but can understand your needs as a cancer survivor.

Physical therapists come in all forms, just like the rest of us. Word of mouth is good sometimes. I would suggest calling a few places and sort of "interviewing the prospective therapist" and explain your concerns and goals. It's important that you get a good fit with someone. Many places have websites where you can email the clinic ahead of time and see if there might be a good match for you at their clinic.

If the pain is really bad and you have trouble weight-bearing, then you may want to consider going to a place that utilizes aquatic therapy for a start. Once you progress through that, you can move to solid ground.

I wish you the best of luck in getting treatment for these residual problems. These things don't get better with age, that's for sure, so better to get on top of it now and wean to a maintenance program that you can live with.

Take care and I'd be happy to help in any way I can.

Kerri (your resident OCF physical therapist...JK!)

P.S. There are also some therapists that treat TMJ issues and more specifically, head and neck cancer patients. Your closest cancer center probably would be a good resource....and of course, you should be checking in with your doctor to see if he/she feels that any diagnostics are necessary at this point or just to start PT and see how it goes. Usually, if it's not significantly better in 6-8 weeks, then you should revisit your doctor for further investigation.

Just speaking for myself and keep in mind I had no surgery, the pain in the mandible and the trijeminal nerve has pretty much beeen the norm since the trismus from radiation. The pain in the tummy area is most likely adhesions and even the hip pain is probably adhesions but you want to do what Kerri says because the key is top keep fibrosis from forming. A good physical therapist that deals specifically with post treatment issues would be able to quickly ascertain what type of stretching and strengthing you need to do and get you back on track. I tried to cross my legs one day and my right hip wouldn't let me. Short story...they wanted to do a hip replacement but I found a good PT that had me doing a lot of different excercises gradually as he worked the joint and I was playing full court basketball in 4 weeks. I was told it was severely arthritic but the same radiologist now says there is no sign of osteoarthritis or bone spurs on the spine. Amazing if the body can heal even something like that in 5-6 years. I know that chronic pain is the worst thing to deal with physically and mentally.

Don't forget Livestrong at the Y. I am a big proponent and thought I got a great start and buildup back to the gym in a very short time without much pain by people that knew what they were doing. They compared it to a modified Pilates program as far as the stretching goes.

Like Kerri says, if you don't see results soon and you start hearing about 17 weeks of this and that, you probably are not working with people that know your issues and are trying to rebuild someone from an accident or lack of enough excercise vs someone who has been to the edge and back like us!

Ed

Well thank you all for youre advice and kind posts, i will seek further help from a therapist