|
In Remembrance
|
|
Join Date: Aug 2006
Posts: 1,002
|
|
|
In Remembrance
Join Date: Aug 2006
Posts: 1,002
|
I have already written to you more specifically, with PMs.
But here I'd like to stress that not all neuro TOS or veinous TOS are the same - at all.
Some work with heat for relief, others ice. And in my case, first few years heat felt better, now, ice is much more helpful, so the illness itself changes with time.
Dr. Annest told me that if pulling on the spine felt "good", then my problems might be more disc related. But if traction did nothing or worse, hurt me, then TOS was more indicated.
The problem with neuro TOS is that it is the GENERAL opinion of docs that you can't see (under any imaging) the damaged nerves. (Veinous you can see the blockage. But neuro TOS is swollen, damaged, malfunctioning nerve systems which then may cause more damage to other near-location nerve systems - that's why I believe sometimes legs can hurt, too.) But the docs don't know, unless they're one of our top docs, and even they differ in opinion.
Dr. Brantigan did not want to operate on me because he said that although he saw neuro TOS, he also felt a swelling / immunological response was happening too, and that it just didn't have a name yet. He explained that there are literally hundreds of neurological disease processes that haven't been identified to the point of being given a name, but nevertheless, people suffer.
I do believe that this year, RSD has been my main fight. I fight this by doing small walking, but not over exertion - and having my home aid use "Aspercreme" and feeling and finding these grape sized muscle knots and rubbing them smooth or just gently rubbing the creme onto the muscles, with a point to try to rub them the "right" way to smooth them out.
With this plan, I seem to have a three- to four days of walking, then a flare up, then after a few days, or more, walking again.
If this doesn't sound very optimistic to you, I'd understand. But for me, this is progress.
Finding a good pain mgt. doctor, specifically an anesthesiologist in my opinion, is the most helpful. Although their offices can really get information screwy and cause problems - (thank God for my primary caregiver and boyfriend who spends hours straightening out their mistakes) - my current med program seems to be great FOR NOW. I take Fentanyl patches, as my baseline. Then I have a very small breakthrough pill that I only use if I am in horrific pain. He doesn't give me much, so I have to always use these things in less amounts than I'd like. I know he's trying to keep me at lower doseages to avoid the usual "getting used to the med" and then the meds no good at all. I also have a sleep med, and one for muscle relaxing - because that is a separate problem. I know my body VERY well and use only the least amount.
Since 04 when I first got pain meds (or whenever, maybe it was 03), I have NEVER been high. Topomax scrambled my brains - but that wasn't a high, that was a weird mania which I'd prefer to never experience again. We got rid of that drug, after the first couple of months really getting some great new movement, so it was depressing to see yet another drug not work.
And these drugs are just dealing with the effects of something being broken in the nervous system - they aren't FIXING the problem, and it's always bothered me that I (0ther than the one surgery) am doing nothing to FIX the nerve problem, other than walking, massage, very occasional traction, etc.
I stay alive because I have two adult daughters who I don't want to further disappoint. They saw supermom attorney / judge, now ugly, bedridden mostly, and often unavailable to talk because I'm in too high of pain. They've lost a lot, and unlike someone just getting cancer and dying (like most of my family) this illness just seems to go sooooo slow...what will kill me? Kidney problems from too many meds? Some complication from autonomic neuropathy? (Thank God the breathing problems and digestion problems have calmed down.)
I definitely notice that the nerve systems seem to attack different parts of my body - for several months it will be headaches and neck aches - several months it will be thighs - now it is feet and ankles and hands and forearms. If I talk to a doc about this, they'll either think I'm crazy or just stare. Doctors have been a huge disappointment in this illness. I have learned that unless they can identify and cure you quickly, then they categorize YOU as crazy and a failure of your own. Not very nice, in my book.
I've read many books now written by doctors who got hard to treat or uncurable ortho problems. They start to sound like us. But they ultimately believe they find a cure for themselves, through good ol' hard work at the gym. But our condition is NOT an orthopedic condition. It is a neuro / vascular condition. Sometimes I have to remind docs of this, but they don't make the connect.
The worst of all docs are the emergency room docs. They are very eager to peg you as drug seeking. But if I'm not seeking drugs, that's hard to force...haha, I can see their disappointment in not being able to write (drug seeking.)
So I sound a little skeptical, down and unhappy with the AMA. I am today. I don't know why a male doctor has to feel that he has "failed me" instead of measuring we got these days of "better days" and we're fighting this together...oh well. I am not blaming the doctor for this illness, nor expecting a miracle from them.
To close - our symptoms can be different from eachother, and be careful that some ancillary symptoms can change over years. But go back to the basics - did this start with:
hand pain
loss of use of arm / hand
headaches
pain disrupting sleep
need for more rest
and no other identifiable disease or ortho reason - then it's neuro TOS. (Also taking a look at any accidents or past med history and current work history / duties.)
Support eachother. Put away personal dislikes or issues and ASSUME that we all love eachother, while still keeping some personal stuff private if you've got a work comp, ins. or social security file going. Once in a blue moon we will have a troll who can try to upset us. But our mods are great in helping in that area. Try to meet at least one other TOSer (or more) in person - it is so helpful for optimism.
|