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.

Jamie It's important that you have pre-emptive analgesics prior to the op to prevent it causing spreads. The best I've read of is a continuos full sympathetic nerve block, for amputation its 48hrs pre to 48hrs post.

I too have heard of this. Thank you, I wish my asking would be worthwhile but im lucky to get any sort of pain relief from my dr.
My dr i think doesnt believe i have the pain i do, let alone stage 4 RSD.
His actions speak louder than words.
He drastically has cut my oral pain meds on top of the pump being discontinued. During the initial pump pain pump turn off was some of the most horrible 4 weeks i remember and i still do have really bad days like today.
After surgery, I will be lucky to receive post op pain meds in recovery and ill be shell shocked if they send me home with any.
Ive never misused or been tested positive for anything besides what i was prescribed and at correct amounts. I have found no good reason for this kind of kick ya to the curb treatment.
This dr diagnosed me but is not willing to treat my pain appropriately. Im removing the pump also bc it will open up my options for a new dr.
I hope surgery and recovery goes better than im expecting, but right now with taking my meds, im lying in bed after relaxing all day and napping too, and my pain is so extreme, i can hardly think. through every nerve in me and i cant even think of a week from now how ill be feeling....
Jamie

Hi Jamie,

Sorry you've been going through such a tough time for so many years, must wear you out... Just my opinion, but your doc doesn't sound like he's doing his job properly, the most basic rule of CRPS is to treat the pain appropriately - and of he doesn't want to give you pain meds or discuss your hospital anaesthesia options then he is being downright mean. It is so important after all your problems and spread, that they give you decent pre-op pain treatment, and extremely good post op care, including whatever you need when you go home. I would be very wary of going on for the op without knowing how they are planning to deal with your pain. This stuff is just way too important...

I wish you all the luck in the world, and good for you on coming down on the pump relief to this stage. That's one long hard road!

Hope your op goes well and you get some answers and reassurance before you go in.

Bram.

Brambledog is very right in what he said. You need good communication with your doctor, and have all the issues adressed before your surgery. If he isn't talking or listening to your worries, it is time to seek another opinion. I would have to trust my doctor 100% before I would submit. Full CRPS needs extra special attention, before during and after your surgery. Your doctor needs to tell you exactly what he will do for you. I hope you get all the help you need. You will be in my thoughts and prayers. ginnie

Is the pump causing you problems, if not and they won't give you pre-emptives refuse the op and leave it there and start looking for a doctor who knows about RSD