[Jamiemarie23]

Hello, My Name is Jamie. I've just joined here.
I'm 22, i have has R.S.D./C.R.P.S. since 1999 when i tore a ligament in my arm and it was replaced with a cadaver ligament. My Pain set in shortly after my initial injury.
I'm doing my best to be brief as much as i can about this journey i've been on for the last 14 years.
Heres my story, I hope i didn't drag on too much. I apologize if so.
Currently i'm having my pain pump removed on april 29th.

I have done everything to my knowledge to try to lessen my pain.

First only in one arm, my pain began to spread. It went to stage IIII Full Body R.S.D./C.R.P.S.
At this point i took a more drastic approach and flew all over the country with my mother, in hopes of finding a Dr who had answers.
I had a total of 4 SCS's in 2 years, and i lost them all to infection or movement of the leads. The SCS's weren't for me and didn't help me and caused so many problems.
I was given the choice of an implantable pain Pump. I opted yes.
After a year plus of failed attempts of conventional pain meds via the pump, and orally, i was given the choice of trying an experimental drug derived from a Sea snail, it was called Prialt.

With the Prialt, it was given through the pump.
The normal dosages were not affecting my pain and my Dr and I increased the dosage to a unknown possibly dangerous level. I wanted to try anything.
I became very ill, I went into heart failure and my kidneys began to cease and shut down. I became unable to walk because it began to deform my muscles in my legs and feet. I was devastated because i had been shown very promising results and i was 19 and I strived for the life i felt i deserved; with less pain.

My Dr and i have tried every known combination of oral and intrathecal pain meds at various levels.
Its become clear the pain pump isn't working for me and was causing more problems than helped.
For the last 6 months i have weaned off my oral pain meds and the Pain Pump.
After weaning to lowest possible level the pump would allow, two months ago my Dr and i turned the pump off.
I'm now scheduled for the removal of the pain Pump on the 29th.
I haven't had a surgery for 5 years since my condition worsened and i'm sorta concerned what i'm facing here in about a week. Ive yet to be given any information or what to expect....
Can anyone share their experiences with this types of surgery?
Does anyone else have RSD here that would like to chat?

[happyisme09]

Welcome Jamie.

Just wanted to say hi and hope you find relief, soon!!

[GladysD]

Hi Jamie,

Welcome to Neurotalk. Hope your surgery goes well, and that you find other that can relate to what you're going through here.

[Darlene]

Jamie,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Sad to hear what you have been going through. Here is a forum you need to check out. There are some dear friends there for your questions.

Reflex Sympathetic Dystrophy (RSD and CRPS):
http://neurotalk.psychcentral.com/forum21.html

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.