I was dx with SCC in 2003 on my son's fourth birthday. I have had surgeries, radiation implants, HBO, more biopsies, radiation burns and now more complications from the radiation treatments. I have seen several doctors and have changed ENT specialists but all to no avail. I am still miserable and in ALOT of pain everyday but no one seems to have any answers or solutions and they only thing the doctors seem to know how to do is reccomend costly procedures and biopsies that do not help. All the biopsies are normal and because I don't have cancer they have NO IDEA what to do to make me better. And as of today I feel like I am going to have to live in pain and be miserable for the rest of my life while the doctors keep guessing. I am very grateful that I don't have cancer but I also want my life back. I have four children and a wonderful husband and I want to be the mom and wife they deserve but I can't because I am miserable and spend too much going to doctors who aren't able to help and won't listen to me. Getting pain medicine is a huge deal with every doctor, I'm not an addict, I am a cancer survivor who is trying my best to deal with extreme pain and still have something that resembles a life. Why is it so hard for them to understand that? Don't I have a right to live without pain or at least be able to manage my pain until they figure out how to fix it? I have a hole in my gums exposing jawbone because part of the bone was dead. Three weeks ago the oral surgeon removed part(2in.) of the dead bone and wants to wait and see if it will heal without any further intervention but nothing is getting any better and he seems to be sticking firmly to the "wait and see" treatment plan. Meanwhile, I have trouble talking and eating and I am losing weight quickly(almost down to 100 lbs.) Why can't I get any answers? Can anybody help me?

I am sorry to hear that you are still experiencing so much pain. My mom is now two years out and still has pain, and there is a small spot on her jaw bone that has suffered from necrosis. My moms RO has her on neurontin which is a med used typically for seizures. I see that you had hbot, did you find that helped with your pain?
My heart aches for you, for all here, who want to have their pain under control. I know my mom is waiting to wake up one day and not feel any pain...to just be normal.
I'm sure others will be on offering you support, Ezjim is another member here who had the implants and is going though hbo now.
You have found a terrific source for support here. Welcome to OCF.
Donna

I'm sorry that I'm not able to give you any input. Please know that I'm thinking of you.

Yes Donna is right, I had the rad seed implants and they almost did me in and was given up on, I came back to the day I before I was being transfered to an extended care facility to en my days . Naw, not for me. I live with pain as yu do and right now am going thru Hyperbaric Oxygen Treatments. I guess this will help the body grow new blood vessels to cover the jawbone that is exposed on the right lower side. I don't complain too much because I am alive and can still laugh and enjoy people. My biggest pain now is driving 194mile round trips for the HBO daily. These you take for 2 hours 5 days a week, I wish I had some advice to give you beacuse I know what you are going thru. I have enough biopsies taken to make a new mouth LOL.. I imagine there are people that would love to see me with a new mouth. LOL One that didn't open so much. Good luck and I hope your Drs do something to ease the pain Momma. Jim

I had to have my teeth removed before they even did the rads and chemo, all in prepartion for the rad implants. Sorry I forgot to mention this. Forgot the 3 days in a coma state that turned into 7 also.

Thank you all for the support. It is definetly much needed, because it seems like the doctors have no answers or sympathy. I had 45+ HBO treatments in 04, that's why they don't know what to do, this shouldn't be happening. I will ask about the nuerotnin to see if that's an option. Thank you again.

Me again. At one time my mom saw a neurologist for the pain, he had her on effexor, antidepressant, for the pain. My mom didn't handle that medication well, it made her sleepy. My sister and I do think that mayb e that helped her a bit. This was in combination with her neuronrin, oxy and advil. She also uses lidocaine topically as needed. Fortunately its not needed as much as it once was.

May I ask what your first name is?

My mom is away currently for at least another week. I will ask her next time I get a chance to talk to her if there was something else that worked.

Donna

I�ve had complications from RT also � lots of pain and slow healing. My doctors tried a number of different things before I went for HBO.

For pain I also used the Neurontin for a while (plus a number of other prescription pain-killers). My RO also prescribed Trental / Pentoxifylline (400 mg) which was to help with the blood flow issues in the radiated area. He also had me take vitamin E for the same reason (800 IU twice daily). I still continue to take 400 IU of vitamin E twice daily.

My HBO doctor told me that they are unsure how long the effects of the HBO therapy lasts, and that if I needed dental work in the future (5+ years) they may want to have me repeat the HBO treatments.

Perhaps it�s time to switch doctors if you haven�t tried that option already.

I hope you find some relief from the pain soon.

I also saw a nuerologist for neck and shoulder pain and arm numbness and had more tests but results weren't clear or conclusive. The HBO was for radiation burns and did help with my pain for about 3 years. Which is when this pain and jawbone stuff started at the beggining of this year. What is a CCC and how do I find a good one? Will they see me even if I don't have cancer?
Thanks, Amanda

Thanks for the advice. I have added all your suggestions to my question list for the doctor tomorrow. Hopefully I will get some answers or at least be referred to someone who can give me some answers.

I have had the Neurotin, Trental and the works, none of it seemed to help, I am on the Pentoxifylline 400 mg tabs at the present. I have had 3 refills gone and 3 more to go. I also have amitriotyline HCL 25 mg which I have yet to try. Too many pills I think . I still use the magic mouthwash tho as it does help in aiding with the pain before meals. The pentoxifylline I take 3 times a day. I think a lot of the pain is from the implants. Good luck.

Pentoxifylline is the generic name for Trental (or visa versa).

My brother's doctor gave me PET scan results today for Mikey and told me his jaw has dead bone too and that all of his teeth have to come out and that unless he stops smoking he will not be eligible for bone replacement surgery (even though his PET showed him to be cancer feee). I know he is in a great deal of pain too from his jaw. He also can't get any doctor's to prescribe pain meds. All the addicts have easy access to prescription meds (or so it would seem from the news) but cancer survivors can't get pain relief. It is a terrible thing that cancer patients suffer because of drug abuse by the general public. Mikey is bascially on mostly liquid diet as he can hardly chew. His weight is way down but he hardly ever misses a days work. I don't know how he does it. I am trying to support him and hoping he can get the needed surgery.

Patty, Most Drs in this area take care of the pain 1st with meds. I hope your brother quits smoking as I did. I had 50 yrs of it and quit cold turkey. I will say it has made a big differenc in my lungs and the way I feel after exercising. I still hurt and more lately, but I want nothing stronger than percs and MMW with narcotics in it. I am getting HBO or hyperbaric Oxygen Treatments daily for the exposed bone in my lower right jaw. Supposedly this will aid in new blood vessels growing and encourage the flesh to grow back over the bone. Yes Susan, you are right and I made a mistake, they are the same only one generic.

Thank you, Patty. I was wondering if there was a test to show how much of the bone is dead, so thank you for answering that question for me. I think it stinks that addicts can get the pain meds but cancer survivors are treatedlike addicts because we should be fine. Ironic. Please keep me updated on your brother and I hope he gets the surgery.

Have you tried a Pain Management Specialist? Dana's ENT said at one point "You shouldn't have any more pain, and I will not prescribe any more pain meds." He referred Dana to a pain management guy and he sees Dana once a month. He reviews the pain level and prescribes once a month with the understanding that Dana can call if there are major changes in pain level. Meds have been fine-tuned each time. He now takes Opana (long lasting) and Lyrica (for nerve pain) and Lortab only for breakthrough pain. Their goal is to provide a constant pain relief instead of the kind of pain relief that eliminates the need for a watch (you know...every 3 1/2 -4 hours). He is finally able to sleep through the night and is able to get more enjoyment out of his waking hours. The pain guy urine tests on a random basis, so it keeps the addicts out of his office. Hope this helps and good luck to you!

I had to drive 2 hours to UVA to get morphine today. No appointment but because I asked for the refill I had to be evaluated again. Even though I take these only as needed and this only the start of my third scrip since june 23rd. You can buy it on the streets with less hassle.

Hello,

I see you live in IN. My husband went to IU cancer center in Indy for his treatments. They were great to work with. We still go back every 6 months now. You might give them a call.

I was in the Hospital for four days the 16th, 17th, 18th and 19th for pain management. I had 4 Drs and now one will be the main guy to get me straight and under control for pain. They sent me home with methadone , which helps a lot with the pain and I take it every 6 hrs. Plus there is Indocin that I will be taking in liquid form when the drug store gets it in. This plus most of my other meds. The methodone I can take every 3 hours for breakthru.

I live closer to Cincinnati than to Indy, I have an appointment with Christ Hospital cancer center tomorrow morning, so hopefully they will be able to help me. Thanks for the suggestion.