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In Remembrance
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Join Date: Aug 2006
Posts: 1,002
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In Remembrance
Join Date: Aug 2006
Posts: 1,002
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Victoria,
You wanted the doctor in Santa Monica and I believe that his name is / was different than that one that you were given. I know a couple people here went to him and kept going for needle type relief because they were not going to go forward with surgery. Gosh, it was with a P or F, someone must remember this guy. This doc ONLY takes cash.
But Olecyn has a very good doc who does good imaging, I think, Dr. Jordan, doesn't he Olecyn? (PM her.)
and,
is anyone talking about Dr. Collins at UCLA who is the radiologist whose wife and daughter have TOS and he does a neurogenic imaging MRI that costs about $20K. Ins. may cover him sometimes, but in work comp they won't because no one else can "see" what he sees on his imaging, and it doesn't seem to make any difference to the surgeon. Most surgeons do their own imaging or have someone they rely on. Many wait and see what they get when they get in there.
I fear that sometimes our pain is so high we start chasing rainbows - meaning, the doctors around you who do vascular surgery and have done rib removals and scalenectomies are probably just as good as the ones here. I believe the doctor I went to in Denver (Dr. Annest) was preferable because they do the surgery all of the time there and the hospital and nurses are aware of what happens. After my surgery they think I got hit with a huge wave of fibromyalgia - I think it was RSD - it doesn't matter because what they did was hit it back with a huge wave of Fentanyl so at the LEAST I wasn't in horrific pain like I get here in the desert. These docs out here do NOT know what RSD is, or what to do, and call me opiod chasing, when in fact I am sitting in front of them with an RSD emergency (for instance) and they need to respond, fast, and they don't!!! It is very scary!
I also wonder if you would be any better with more surgery, wondering about the "scar" tissue, because quite a few of us out here in CA when we met were all progressing, in pain, and it was and is the nerves still reacting and until they heal or stop ( or are taken off-guard by meds) then they keep hurting - I'd hate for you to get another surgery and trigger the RSD to another area (new.) Remember the RSD is when the skin stays red like a sunburn and is hot ALL of the time and the pain is horrific. It can come a day or a year...thankfully, if I can hit it I can hit it with Ativan and Fentanyl I can usually push it back down, but right now the weather is changing and causing it to come out. (See other post.)
I wish you luck and be careful chasing doctors - I will PM you.
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