Thank you, hon, for posting that. I have strong opinions about my surgeon. I didn't at first...but then I spoke with OTHER surgeons who confirmed to me that his way of doing my surgery wasn't really the proper way. I also was speaking with someone else on BT before it crashed who used the SAME SURGEON who was having the SAME COMPLICATIONS I am now having....but then the board crashed, and i can't remember who that was. Too bad I cannot access the archives or my old mail over there. I'd like to find that person again.

Anyway...my reason for the surgery was because I had gone undiagnosed for so long, that when I finally found someone who CONFIRMED I wasn't nuts and who actually said, "I can help you" I was THRILLED. Even though I knew it wasn't going to be a COMPLETE cure, I would have done ANYTHING to get just a little bit of the pain to go away. And he assured me it would. A little over a week later, I was having the surgery.

Actually, i didn't go undiagnosed that long for real. I first heard the term "thoracic outlet" after my very first EMG. The report stated "ulnar nerve entrapment at the thoracic outlet." My md sent me to some specialist where I waited 3 hours only to be told, "I don't believe in TOS, have a nice life!" and that comment there, was the first, but surely NOT the last, time I heard that comment. Then began the long 5 year battle of not really finding someone who DID, but of my md sending me to specialist after specialist, who sent me for test after test, looking for anything OTHER THAN TOS. But what I figured out was this: If you go to a neurologist, they are going to look at you from THAT perspective. If you go to a vascular surgeon, they are going to look at you from THAT perspective. I've been to so many different types of specialists, i can't even remember what they are all called. I've had diagnosis from MS to RSI to anything BUT TOS. I wen to PT 4 times cuz every doctor who sent me swore THEIR therapist was the best. Once I was with them a while, they figured out it was TOS. But since the doctors wouldn't believe it, they were't allowed to treat me for it. My First and 4th PT were the same....and they DID treat me for TOS. However, the first time is because my MD sent me, and he DID believe in TOS (but he couldn't do anything about it - he wsn't a vascular surgeon and knew nothing about TOS), and the 2nd time was after my surgery.

ANYWAY....what the point of my long, drawn out tirade was supposed to be was .... No matter what you're told by anyone, when you have suffered wtih chronic pain, once you find an "Angel" (aka: Dr. who claims he can help you at least get rid of SOME of the pain) you ARE going to go thru with it, regardless of the NEGATIVE things ppl may say to you. If someone would have told me that this surgeon had a reputation of losing 99% of his patients right there on the operating table, I'd have STILL gone thru with it...cuz there was that 1% chance I'd have lived and been in 20% less pain.

I tried giving that advice to someone...to not go to this surgeon, to not have a sympathectomy...and they didn't listen. I understand why. I was there before. I wouldn't have listened either. The IDEA of having even the SLIGHTEST bit of relief is just too strong. I went thru it for 5 years. I know. There's a "pull" there.

Chronic pain is so overwhelming, and so completely takes over your life, that you'd do just about ANYTHING to get rid of it. So frankly, no matter what anyone tells you, it's not going to change their mind.

I liken it to love. If you love a man, there's nothing anyone can say to you about him to make you NOT love him. If your best friend told you she saw with her own eyes that he was an ax murderer, you'd tell her she was lying, and you'd tell her to get out of your life rather than leave him. CP is the same way.

STinks how it overwhelms your life so completely.

Now, I'm worse. I had bilateral TOS, and at that time had the surgery on my right side. I also had RSD PRIOR to the surgery, but my surgeon took no precautions as he should have by using blocks, etc, before doing the surgery. Instead, he said, "If the RSD doesn't resolve with this surgery, we'll do a sympathectomy when we do the left side." I knew NOTHING about RSD at that time, and was so busy "preparing" for my out of state trip for the surgery the following week, I didn't BOTHER to research. Had I had time, I'd have found that comment was very odd...as surgery MAKES RSD SPREAD. That would have been a huge hint to me that he didn't quite know what he was talking about. I'd also have found out that sympathectomies were a "last resort" and realized that him talking so "flippantly" about it was a "danger will robinson!" sign.

I came home and checked BT1 to find a post by someone telling me "NO! IF YOU ALREADY HAVE RSD, DON'T HAVE THE SURGERY!" It was too late....I had already had it done. But I believe I'd have done it anyway, even if I HAD read that prior to going. But....I do think I'd have insisted on a block prior to surgery though...and possible, with being so proactive in my care, prevented the spread of the RSD.

I was SO INTENT and SO FOCUSED on the hope that surgeon gave me of even the slightest bit of pain relief. All I kept thinking was, "I have lived in pain for 5 years...if this guy can get me even 20% better, even if it takes 2 years to heal from both surgeries, then that's better than living the rest of my life in this pain."

Well...I'm worse now. The RSD spread, and because I fear the LEFT side surgery making the rsd even WORSE, I won't hve it done. I do have to admit that the surgery on my right side did get rid of the tinglies, though my arm does tire easily. I still cannot lift it up high to reach high cabinets though, nor can I straighten it all the way cuz for some odd reason after the surgery my elbow was bent and wouldn't UNbend. We worked on that elbow like crazy after surgery. I also cannot do things like "reach into my back pocket" with the surgical side arm. So I am limited now in ways on the surgical side that I WASN'T before...and my RSD is much much worse, and i still live every day with the TOS on my left side.

But there's nothing I can do to change the past. So I worked my BUTT off trying to desensitize to the things I deal with in everyday life at home and at work. I had great OT and PT, who knew my goal was to be able to work. Even though working, then the 1.5 hr drive home, has me totally unable to even SHOWER MYSELF when I get home, I don't feel right letting go of my job. I've always worked hard. I was a single mom for a long time. I've HAD to work hard. I'm very good at what I do. I don't want to let this go. So, unfortunately, my homelife sufferes for it. If it gets in the way, yes, I'll quit working. For now, it's the only thing I have left of my "old life." So I hold onto it tightly.

Oh...sorry to rant. I have to get some shippers done in the next 5 minutes!