The doc at the pain clinic told us the ongoing pain in mom's mouth, ten months post treatment, is due to IMRT related nerve damage. I don't know how she determined this, but she rattled off a couple of ideas on how to deal with the pain: daily narcotics or killing the nerve. I'm not crazy about either of these. The oncologist wants her off all meds, which I kind of like. On the other hand, she needs to be comfortable and would like to get rid of the g-tube. Killing the nerve doesn't seem like a good idea to me. She won't be able to tell if things are too cold, too hot, won't be able to detect pain, etc. I am really getting frustrated. So many doctors and so many different opinions. $900.00 on drugs last month; some had to be thrown out because the docs forgot she's a tube feeder and prescribed drugs that can't be crushed. From the psychiatrist to the pain management doctor, they keep prescribing more and more drugs. This is ridiculous. If the drug doesn't mask the problem, they suggest increasing the dosage. Hell, with all the drugs in her system, all she can do is sleep all day. Furthermore, a lot of the anti-depression meds dry out the mouth -- which isn't helping the situation. This is nuts. My mom passed out and lost her pulse for a couple of seconds last night, throwing up all of her meds. What a way for her to spend her birthday...being rushed to the hospital for a weekend of even more drugs and doctors. I have to question if all the meds are the source of her passing out. This past year and a half has been an out of control freight train. I have things to be grateful for, no doubt about that, but mama-mia I am sooooo tired. Hell, I've lost 15 pounds in the last two months. At 6'2" and 155 pounds, I really don't need to be losing weight. Anyhow, back to the topic at hand. Has anyone experienced a similar problem with damaged nerves? Were you able to find a better solution? I'm really searching for options. We've taken her for accupuncture, chinese medicine. I don't know.
Is it just one of those things that she'll have to adapt to and live with? Maybe because of her age (72) she isn't recovering as well and as quickly as others. The good news is that there doesn't appear to be any cancer detected. The downside is that the quality of life hasn't been so great since tx ended. Its basically been a drug induced haze. Honestly, her life has been a drug induced haze since January, '03 when her symptoms first appeared. One step forward and a couple of steps back, I guess.
Thanks and take care.
D

I hadn't heard about the nerve damage before, but on my last visit to the ENT he did say the surgery and rad probably created some scar tissue that would make some areas of my mouth ultra sensitive to some things like spicy, heat and cold. It doesn't sound like my problem is near as severe as your mother's though.

What I can relate to is the rainbow of pills that can happen, almost without one even knowing about it. Happened to both my past wives, at the end of the day I had to have a hazmat team clean out the medicine cabinet almost.

How many doctors are prescribing meds? Do they even bother to look at one another's prescriptions? Are you going to just ONE pharmacy to have them filled, and are you on a first name basis with the pharmacist. That sounds crazy, but we did that with my first wife and he helped quite a bit and spotted some things that might have been contra-indicated or interactive that might not have been too good to take. If you don't have a PDR, it would be a good idea to pick one up. Kind of into the technical jargon, but one needs to really understand what medicine one is taking.

I'm sure some others have some more useful suggestons, but there's my perspective, been there a couple of times, and that didn't even count my go around. I stopped the docs at 3 pills a session when I was in the hospital, told them you only get to feed me 3, which ones do you want to feed me, pick the top 3 and scrap the rest. Started getting nauseous from the pills themselves, said, nah, this ain't gonna work.

Hope your mom does better soon. Don't forget to take care of yourself, you can't take care of your mom if you don't keep yourself healty.

diddier, I wish I had the answer to make your mom feel great and give you a much deserved break. However, I can only say that after mouth surgery and neck dissection, I had a pretty good blast of IMRT, with chemo, and had no nerve damage. This is the first I have heard of that being a side effect of IMRT, and I did quite a bit of research before I had it. As far as the meds go, I think you are right to be concerned. I think a review of all her medications by her primary physician is in order, or as recommended above, by the pharmacist. I had to do that for my mom when I was taking care of her. She felt better on less medication after I demanded that something be done. Sure wish I could help you both!

D-,

I can imagine you are worn out by now not to mention the financial burden. My heart goes out to you.

I get strange stabbing pain and numbness mostly on the left extremeties but sometimes on the right feet and hands, headaches and my left eye hurts. I also see stars when I stand up sometimes and have passed out a couple of times. I just attribute it to the chemo and/or radiation. I have had my carotid blood flow checked and other assorted tests but nothing has surfaced.

I agree with Bob (JetAgeHobo) about getting someone to step back and analyze the medicine situation, preferrably a pharmacist. Not just because my father is a pharmacist but because they tend to know more of the neutral stuff (good and bad) about medicine and don't have some fast talking, pleasant person trying to convince them their company has the best drug on the market, if you know what I mean. Make a list of all the meds, dosages, frequency, etc. and run it by the pharmacist. If you use multiple pharmacies, try hard to consolidate to one so they can help you better. I have weaned myself of all regular medication because I just didn't like the effects and interactions.

I know someone that had the nerve block done for a wrist injury. My wife works for a dentist that specializes in head, neck and tmj pain and he does the nerve blocks all of the time. I will ask her to email you tonight.

I hope things get better and I hope and pray for a good day for your mother, your father and especially you! I am so sorry you have so much on your plate right now.

Ed

Thanks everyone for responding. Tomorrow is doctor day, and I'll also make a visit to the pharmacy to make sure mom's cocktail-o-drugs are within reasonable levels. Take care, and thanks again. I really appreciate your ideas.
D

Didier -

I wish I had something to offer you. Good luck with the doctors.

Uptown -

I've had the same stars feeling. It helps when I drink more water and Boost. The doctors told me it was from the heart not having enough fluids/vitamins to pump blood up to the brain. Or something like that. But extra food and water always helps (had that yesterday, in fact).

Sabrina

Sabrina,

I am eating like a pig, drinking like a fish, gaining weight like a sumo wrestler.

I have been averaging close to a gallon of water a day now and feeling much better.

(You are always a star in my books!)

Ed