I know what you mean, Karen. I had the same problem. No one wanted to pay me the time of day - either because they didn't know about CRPS or perhaps your surgeon may be put on the defensive a bit because if we complain something is still wrong, then that some how reflects on him as a 'failed' surgery. As was the case with me. It's very frustrating and sometimes we have to weed thru several Dr's. Eventually, someone will come along and see this for what it is.

Has anyone mentioned anything about the SCS (spinal cord stimulator) ?
Just wondering. Alot of Dr's do these. I have one in my lumbar for the burning neuropathy pain in both legs. It sounds freaky I know. When all other treatments fail, this is sometimes considered, depending on whether or not Dr thinks you are a candidate

I hope you can start getting answers soon.
Let us know how the SNB injections go

Rae

Thanks for the ongoing kind words! And yes, my doc gave me dvd to watch about the spinal cord stimulator. It sounds wonderful. My only problem is cost. My insurance pays 80% but that would leave me with a $20,000 bill in the end. We just can't swing that. Not sure why this is so expensive here, but it is. Hope you have a wonderful day! Karen

Hello Karen....

I just want to welcome you here and it is great that you have gotten such wonderful support from Rae and our family here....One thing we all feel is RSD/CRPS is such a debilitating illness...and I'm sorry we had to meet under these terms...I have had RSD for 5 years now...beginning after rt. Knee surgery...now it has become internal and an ugly pain!! Rae is so right, in that we have to weed thru Dr.s until we find one who cares...enuf to take interest in our troubles, pain, future and what the heck is this illness really about..the blue, red mottled skin along with a glisten, shiny look to your skin...so classic!

I'm so sorry you are having to experience this pain..it is relentless and our homework is never ending! I do have a SCS... Many have success with pain relief to some degree with it .. Honestly, I did not get such good results with mine...I still have it and don't care to remove..mostly not wanting to encourage more spread of my RSD with the surgery it will take to remove it...but as with RSD... Nothing is consistent with us all...ugly disease, I tell ya...

let us know how ever we can help....weeze family here...

Hi Rae!!


hugs, Kathy

Hey there, Karen! I can see that you've met up with some great folks already. I'm so glad to see that you're getting the same terrific support that I got a few months back when I popped up with questions, questions, questions .... & a whole lot of scared.

Just keep on coming back, asking questions, & put that pain pump on the back burner but not out of the picture. Do you have any connections--vet, anything?--that might give you even 1 time access to additional coverage? I just like to keep "impossible things" close enough for my guardian angel to ponder...

I'm so glad to meet you. Ask for any support you need, including a friendly, non-judging ear should you need toa bit. (I get such of kick out of that emoticon...wish I could set one out on my desk..hee-hee.)

Hope next week is a fine one for you.

C.G.