Quote:
Originally Posted by beth
Lisa, Have you actually spoken with a Pain Mgmnt Dr or Anesthesiologist who is really knowledgeable about treating RSD? I think there is no reason not to try the SGB's to see if they help, while it may be too late to put the RSD into remission, I've heard of many Dr's who do them for patients in order to reduce their pain level. Seems to me they can't know how they will work for a person until they at least give them a try, from what I've heard.
....... if a Dr or hospital "messes up" on a patient once, their lawyers will basically tell them not to offer any tests or treatment that could confirm that they messed up - even though it may be treatment you need. They're looking out for their interests first. I learned the hard way you have to look out for your own, by finding Drs who are not associated in ANY way with the original Dr's medical group.
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Hey Beth...yes, I'm seeing a pain doc now. And he's not associated in any way with my TOS surgeon. That surgeon wasn't even in my state. I had my TOS surgery in December of 05, so next month will be one year. Supposedly I had RSD also at that time, cuz the surgeon is the one who told me I did, based on some color changes and sensitivity to slight breezes and light touch during my exam. AFTER my surgery, and back home here in Michigan, I went to PT...and when I went, I asked the therapist why my hand was so badly "shedding" - I mean, the skin was so HORRIBLY dead that it wasn't just regular dried skin...it was actually flaking into POWDER. She took one look at it and said, "Lisa! This is RSD!" and immediately made me an appointment for the Dr there - and I can't remember what his title was, what TYPE of doctor. But he is the one who wanted to do the SGB. He contacted my surgeon, and the surgeon said ABSOLUTELY NOT! He said it was way too soon after the TOS surgery. It's my understanding that when doing the SGB, they put the needle somewhere into your neck, and since I had 2 scalenes removed, and the top rib, and I was still very, very swollen and sore in that area, as were the "internal things," it would be almost impossible for the person giving the block to get the needle into the right place...and I guess it has to be pretty precise. So, that was cancelled. (This was only about one month after my surgery).
The doctor at PT said he considered at that time that my having the block was an "emergency" and he was quite disappointed that my surgeon nixed it. My surgeon also told him he did not, under ANY circumstances, want me having the blocks until at LEAST 6-9 months after my surgery. PT doc was extremely upset...But he said that he had to go along with what the surgeon wanted...that when he and his office were treating post surgical patients, they had to go along with a surgeons treatment protocol. And especially when it came to TOS, cuz it's such a rare disorder, and my surgeon had STRICT instructions for what I was and was not to do.
I was in therapy for about 4 or 5 months. We did what we could as far as the RSD was concerned. WE did desensitization, they taught me about it, we did tendon glides, and they explained to me that if I did not keep these tendons and muscles, etc active that they would eventually shorten and I'd end up with a "claw hand." So I'm EXTREMELY satisfied with what they did as far as therapy goes.
When going to therapy, the pt doc was also taking care of my prescriptions. They determined they had done as much as they could do....gave me a 2 week break, and had me do some exercises at home, and go about my daily business then measured me again after that. Found that I was making the same (minimal) progress I was making there (I had hit a wall, where I was making SMALLER progress than I was in the beginning) so they discharged me. The doc gave me my final rx's and told me to find an md near home (cuz I had moved from where I had been originally). I did...and FINALLY I found a doc who recognized my pain and my illnesses and sent me to a pain doctor immediately.
I am EXTREMELY comfortable with this pain doc. The first time I saw him, I was a bit "put off" by his cold bedside manner. It was a "wham, bam, thank ya ma'am" type deal...but after seeing him a few times, I realize now it's only because he knows what he's doing. I didn't have to go into detail with him, explain to him like a little kid (like all the other docs) what this disease is, how it makes me feel, how it's really NOT all in my head, and it really DOES hurt and all that...only for them to tell me I'm nuts. And I've seen 3 different docs at this place...and every one of them have said the same thing..."it's too late." They all say that since I had rsd BEFORE the surgery, and I had TOS for over 5 years, chances are I've had the RSD for much of the time I've had the TOS, cuz much of the time it goes hand in hand, and I also recall the sensitivity to light breeze and touch for that entire time. So they all feel that with me having the both conditions (presumably) for so long (though the rsd for SURE for at LEAST a year) that it's "too late" for the sgb.
And quite frankly...the thought of needles in my neck scares the BEEJEEZUS out of me.