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In Remembrance
Join Date: Aug 2006
Posts: 1,002
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Something about this article really burned me
I thank you Jo for posting this, and what I have to say here has absolutely no reference towards you. And I do hope you'll continue to post articles, and such, and please, again, do not take offense to this post. I love you.
Here's how I feel about the phrase that most patients respond well to conservative care - it's OFFENSIVE to my intelligence.
First off, since '02, I have actively sought statistics, much to my disappointment at finding nil, and, actual patients, anecdotal information, doctor information, etc., and all I have found is that most of us get sick, stay sick, improve to some degree, but never return to what we were. That is unlike MOST orthopedic conditions. Think of shoulder surgeries, knee surgeries, back surgeries...and think of those conditions and "conservative treatment." Do "MOST" respond well? Who knows? Who knows how many of those that respond well later proceed to need surgery ten years later? And of those, how many lose their jobs, and never return again to ANY work at all? I can tell you from my exposure to the work comp industry - MOST return to work w/in a year, and usually either to the SAME job, or at least the same field. Well, that ain't us, folks. (And yes, I'm speaking for myself here, and taking some license to make a generalized statement of my opinion.)
I'm venting here, but it's like those people who say, "well, if you really want to get well, you would (or can), etc." That's what I HEAR when I read those stupid statements like that, and I see them on a LOT of Internet TOS blurbs. I find these statements to be misleading to the new TOSers, and to the older TOSers, it's like a SLAP IN THE FACE.
TOS is an unbelievably obnoxious neurological condition that I do NOT believe conservative treatment does much to stop it. My personal opinion is that most of us have a pretty bad case of it, and that a few get a "lesser" case of it, and for those lucky few, the PT does work a little better, but they're still not cured or "normal." So when these stupid doctors talk about "success" with conservative treatment, I want "success" as measured by the OTHER illnesses, like the ortho, or they way they cure cancer (I have four people now who have beat cancer), etc. If the doctors are going to talk about "conservative care" "working" for "most", then show me those people going back to regular no-restriction type jobs, in fact - show me someone going back to my 70 hour work week, then I'll BUY IT.
For the majority, I believe as hard as we try, and gosh darn it, don't we all try, over and over and over again? Don't we all get sad and tired and give up sometimes, but then pick ourselves up and TRY a NEW treatment all over again??? And as many treatments as we subject ourselves to, when they are not successful as the docs promised or maybe didn't even promise, but do we get mad at the docs? Do we ever say, "hey, you're supposed to know what you're doing. Why am I still unable to drive my car and go to a regular work day after 5 years of these treatments / surgery / blocks / meds??? We don't say that, we just keep trying.
Of course I think that with a good surgeon, with a commitment to continued correct PT and gentle exercise, and with whatever other treatments one finds some relief, we get some measure of quality of life BACK from this horrific condition once it has ERUPTED onto us. But I also honestly wonder if it isn't just the TIME that heals the nerves a little, as Merja promised me years ago. If I had done NONE of this, but just waited four years, would my pain level have lowered a slight amount as it has now? And after 28 doctors, why can't they agree on what I have, how I got it, and how to cure it? Why is there no cure, when articles and Web blurbs on TOS make it look like we do a couple of months of exercises and "voila!" we are cured? Why do we let those Web blurbs get away with it? (I don't, I write to each one and tell them my feelings / story.)
Again Jo, please forgive my rant on your post. Please.
But I'm sick of doctors saying in their article, Oh, just do a little conservative care for a couple of months and the patient will be right back at work...that's just BS and that's insulting to those of us who worked so damned hard in our lives and had no control over this TOS hitting us, nor our inability to return to the jobs, work, or lifetime careers that we loved - not to mention the arts, cooking, kids - my God - the vast majority of us, and I'm not just talking on this Board, but I've sought out TOSers from every nook and cranny, and this neurological condition is one of THE worst. (Admittedly, not the worst, but damned close, damned close my friends, from when I had RSD and my body was in a pizza oven, or the TOS pain is so high, or the fibro so bad that it feels like I've been rolled across asphalt and I'm waiting for an ambulance to arrive. MOST neuro conditions do NOT have this level of pain, I've asked the patients! I talk to them about their pain, and they can't even relate to our levels of pain here.)
I'm sick and tired of doctors underevaluating the pain and the disability of this condition.
I guess that's what's got my goose today.
Rant over. Me sorry.
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