Hey, My Name is Jamie. I've just joined here.
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.
Briefly; here's 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'm 22, i have has R.S.D./C.R.P.S. since 1999 wen i was 9, when i severely tore a ligament in my arm and it was replaced with a cadaver ligament. After the accident, My pain set in shortly.
I have done everything to my knowledge to try to lessen my pain.
I was not diagnosed for 5 years after my injury, was told i was faking etc. My pain, first only in one arm, my pain began to spread. In the end it went to stage IIII Full Body R.S.D./C.R.P.S. I also have TOS.
At 16, id had a total of 5 SCS's in 2 years, not counting a dozen prior surgeries.
Currently I've had dozens more similar operations and procedures
5 years ago, I was given my last option; an implantable pain Pump. I opted yes.
After 5 years of failed attempts of conventional pain meds and experimental stuff like high dose Prialt via the pump;(which i almost died from) i've decided to have it removed.
My Dr and i have tried every known combination of oral and intrathecal pain meds at various levels without help and many side effects.
Its become clear the pain pump isn't working for me and is causing more problems than helped.
Now, after 10 months of hard work weaning to lowest possible level the pump would allow, two months ago my Dr and i turned the pump off.
Now, today, I'm 60 days no pump meds that id had for 5 years, i'm pretty stoked. I've worked through so many horrible withdrawals to get to today, to right now.
I'm now scheduled for the removal of the pain Pump on the 29th.
My concerns; I haven't had a surgery for 5 years since my condition worsened and i'm sorta concerned what i'm facing here in less than a week.
I've yet to be given any information or what to expect.... How long ill be in surgery, how many incisions my recovery or anything on afterward stuff....I didn't get to even speak with my dr when i scheduled it. Annoying.
Can anyone share their experiences with this types of surgery, with surgery with having RSD at this stage?
I'm also just introducing myself as i'm new here and am looking to talk with other people.