I wanted to update the board with my experience with after radiation damage. After receiving radiation to my head, for a tumor, this is year 5. The excessive doses of radiation , 40 treatments, stopped the tumor totally. It also killed the bone in my jaw,and the blood vessels supplying blood to the area of the radiated area. That was caused necroise of the bone, as the little vessels were zapped from the Rad. That made the flesh separate from my inner mouth at my tooth line. It causes infections ( year 4 ). First idea was de-compression chamber to force oxygen into the area of blood vessels damaged. No proof of success, so that idea abandoned. At 4.5 years it required the removal of a section of dead bone ( lower jay), replacing it with my hip bone with a titanium plate to hold it together until the blood vessels grew and the bone was refreshed with blood. Also transplanted vessels from lower area of hip to the inside of mouth. That worked, so far, so good. The bone bridged and is growing. Surgeons cut me across the jaw line, and it was a 13 hour operation, indeed I was open for 12 hours with 3 surgeons ( CHUV, Lausanne, Suisse). Next night 2AM, ( Nov 2008) I had an embolism, the room got dark fast. I grasp for life passing me by it seemed. Recovered, of course. Restrictions in opening my mouth ( 1.4cm). Therapy not actively progressive ( 5 months now). Infection in June-July 08 , again! New procedure, remove titanium plate because of loose screw. After varied opinions of further bone damage, theory is a loose screw causing an infection. Situation now, restrictive mouth opening - mild infection, SERIOUS hardening of area of operation , hence jaw and neck as hard as a rock. 1/4 of face numb. Still tired after 5 years, but could be the shock of the operations and treatment, etc. I am 54 now.
Swiss system is cooperative, insurance paid for ...98% of everything at my choice of hospitals. General feeling now : 1. Everyday is new and viewed short term on healing. 2. Live now, and eat good and LIVE food 3. Exercise even if it hurts 4. Protect yourself against stress ( which is harder to manage now)
Any comments, please share. All the best, and greeting from the Alps... Christopher SWISS

Hi Christopher,
sorry to hear of your current difficulties.I am pleased that you are making decent progress after so many hours of difficult surgery. Well done chap!
I worry about radio side effects. My 33 doses finished dec 22 2004. I had secondaries in my neck lymphs RHS dissection. I had an unknown primary. Both sides of my neck ,face and tonsil area were irradiated. My Rad consultant will see me every 6 months for ever now. If I need any serious dental work I have to let him know first.
I have very little saliva and am extremely sensitive to spicy (chilli) type foods. -big shame!!
Fortunately I don't seem to have too much damage to the blood vessels and the bone. (that I am aware of)
My dental hygiene is far better now than before my cancer!! - like shutting the door after the horse has bolted!!

Good luck Christopher - keep us informed

cheers tony k

Hi Christopher. I had 42 RT doses in 1998 and had 6 weeks of Hyperbaric Oxygen Therapy 6 hours a day in 2000, that was the most boring time in my life, ever .
I can open my mouth nearly an inch now which is about 50% more than I could ten years ago. I think the secret to improving that is my constant chewing of gum for mouth exercise, it sorta helps with saliva production a bit too so ideal and thanks Wrigleys .
What works for me is/was,
1, As soon as possible after treatment get obsessive about heavy exercise, it's the key to getting better mentally and physically. I've slacked right off on it now but it got me to where I needed to be so I'm happy.
2, Eat, drink and be merry. Life's too short not to.
3, Try not to contemplate the long term future too much unless you've totally accepted that life can be a bitch .
Obviously 1 & 2 are what the body will allow but I think building up the exercise regime will take people past what they think their own limits are and help them to start feeling good again.
I've got to go lie down now as I'm not used to writing such long posts. . Hagg.

Guys,

Many thanks for your updates and honesty. Christopher's message had my eyes popping out of my head, Tony's calmed me down a bit and then Hagg made me smile at the end. I don't reckon you can beat that for support.

Best regards

Ken

I was a bit worried that parts of my post would be seen as a bit flippant, which wasn't the intention, Glad they didn't. Hagg.

Thanks all, that was all an interesting response, seems that we are all on forever similar pages in a book of life after. Since the jaw replacement, the area of my face is as hard as a rock, like your elbow. The doctor said, during the removal of the plate that held it all together for the past year - he would cut into what is restricting the mouth from not opening. He said, it is muscel and tissue regeneration goes it's own way. I tried lympo massage for months with no improvement. Exercising the jaw is not possible until this plate is removed. The new bone grew fast and bridged. The visual result was perfect, still a pretty face on an older goat.I think I do agree to live life full and forget about all the empire building that keeps guys so busy...It is hard to get there although. Well, the Sun is shining over the lake and it is time to hike up the mountain! Then, a glass of wine for lunch. Yippie.

Sun, lakes and wine (red I hope). Result .