My name is Jocelyn and I just found this site today. I am so happy to have found other people to discuss my health issues with. I can talk about it with my husband and other family members, but it's easier to talk to people that know exactly how I feel & what I am going through. I suffer with Reflex Sympathetic Dystrophy (RSD) and I am curious about the scs pain pump. Does the pump put out some sort of pain medication? If so, what is it called? At this time, I am on percocet, neurontin, zanax and amitryptaline, with no relief!

Glad you've found this wonderful forum!
Here is a link to a site that explains these devices real well:

http://www.nationalpainfoundation.or...e-technologies

Have you met any of the folks at the RSD forum here at NT?
It's a wonderful active forum full of folks who will give much support to the battle you face.

You might want to start a thread in the main SCS/Pain Pump forum below.
More people will see your post and be able to give good feedback.
This is the 'stickie' section of the forum. It's mainly a place for informational purposes....but if you post down below, other members will see your thread and be able to give good input.

It's good to have you here!
Rae

Just found this site and would really like some info on SCS. Hopefully there are some out there who have had the SCS implant for neuropathy in the feet. I have read a lot but none at all for this issue. I am scheduled in two weeks for the temporary and would love to know if there has been any success for my problem. I'll be watching and sure would appreciate some help. I already love this site

I've been there done that with both and on my 2nd pain pump. Started with SCS back in 11/99; led to 1st revision in 5/00 due to one lead broke, the other bent. I have systemic (total body) CRPS/RSD. During the SCS, I suffered marked increase in seizures, despite my neurologist's discussion with pain doc and his denial of any correlation, I told neurologist, it just had to be related. I don't believe in coincidence. After 3 more revisions (total of 4) for SCS, and the eventual total spread of rsd which happens, especially after being diagnosed, then thru a bunch of successive surgeries; doc decided to try me on the pain pump. With my lengthy list of pain med allergies I've acquired Post-RSD, he ended up with su-fentynal and bacolfen meds combined.

Things appeared to be going fine (this is 3/03 by now...I'm a BWC injury..red tape and all); until 7 months down the road (10/03) after a simple refill led to a horrible spinal headache. ER in my city didn't even know what to do for me because of the pump. SIMPLE folks, help with the vice my heads in right now for starters...hahaha (wasn't so funny then tho). two weeks later, first available appt to see pain doc, doc looks under fluroscope and says, well, its revision time for you again my dear. the catheter slipped into the epidural space and meds leaked, thus giving me the headache. the best part was when he asked me why I didn't get in sooner. Like I had a choice in that. hmm.

I decided I didn't want to go thru 4 revisions with the pump now too, so opted to have everything just taken out together (he was going to remove scs when revising pump). I thought my body just didn't like foreign objects being placed in it. RSD doesn't like foreign objects...not just me.

I agreed (I know) to another pain pump implant back in June of this year. I'm not going to the other doc out of town any more since they've literally risen out of the cement the past 10 years. I've been positive with it, but not responding to morphine levels. Started out 95lbs in June, July, but in Sept, started with severe foot/ankle swelling that is now full leg swelling, and up to 125 lbs. Not so sure I can fully blame it all on the edema, otherwise I'd love to tolerate a pin prick to let it out...lasix isn't doing a thing. Cardio negative, except for some overinflated lungs on chest x-ray. I also had urinary issues immediately (i mean that truly) after pump surgery. Urinary retention..subsequent dx neurogenic bladder urologist stated directly related to rsd. had to go home from hospital with a cath bag. UGH. On flomax now daily, but still when last checked at urologist, have more than they would like in bladder after void.

At same time, i was getting intrascalene nerve blocks for upper extremities due to severe pain (stabbing and tingling sensation both). The last 2 didn't work at all. In order to not focus on the pain, i try to forge ahead with my hobbies: ceramics, yarn work, and sewing mostly. Trying to make more handmade Christmas gifts this year (if I can sell any off FB page..even better). Naturally, the pain only worsened and I would swear at myself for being stupid for even trying. Dumb huh. I don't like just sitting and crying because that's what you do when you can't do anything to NOT think about the pain...you think about it.

I don't know if I made things worse or not, but gradually, my mid back (thoracic) began feeling painful, that by the refill date of 10/20 I was hiding in my bed so my 23 y/o daughter didn't see or hear how bad I was. I drove myself to doc appt too. He didn't tell me that day (saw on BWC site) what his new dx was, but he told me that he would be scheduling me for a thoracic facet joint block/injection asap (BWC paperwork approved that is).

I was in agony (50+ if there was a number like that) and it wasn't going stat. no word in a week, so i looked on website only to find out that the c-9 would be denied no doubt because of the dx he used. Not rsd (337.21) but something brand new not in my claim..duh...thoracic facet joint disease? Naturally, i searched to find out what it is and called managed care to tell her i know they will deny and what can i do to get approved fast.

Rest is comedy of horrors like that, cutting to the chase, had it done Thurs; but didn't feel any numbness like previous blocks. Question is, with pump in (morphine and clonidine combo) and keppra on top orally; still no relief, why in the world would it not be taking care of my pain or any new pain/diagnosis? Anyone...anyone...(think Ferris Bueller's day off).

Thanks for the help...I hope.

I'm new to this forum and blogging.... so bear with me. I finally had my surgery last Thursday for my Boston Scientific implant. It's been 6 days and I still have a great deal of post-op pain at the incision sites. It's so hard to find a position that is comfortable. The pain pills don't seem to do much except make me sleepy and weird. My doctor just gave me Nucynta. I had such bizarre dreams and woke up feeling quite despondant. The SCS doesn't provide any pain relief from the surgery sites, and that's mostly what I'm feeling now. I keep hoping that anyday now I'll be up and Adam! Anyone share the same experiences??

Welcome to NT, though I am sorry it is this pain that brings you here.
So you have a Boston Sci SCS?
What type of pain is the SCS treating? Upper extremeties? Lower?
Yes, the incisions will be rather sore for awhile and using cold gel packs or ice will help, along with the post op pain meds. Does your IPG pocket site show any symptoms of infection? Once your incisions heal, hopefully you will feel better about your unit.
It would be great getting to know more about you, so I encourage you to start a thread down below in the active forum and more members will see your post. We are a friendly crew and we do much to help each other as we wade through our challenges and 'victories'
We are now posting up in the 'information' ('stickies') of the SCS/Pain Pump Forum. Come on down and start a new thread to introduce yourself and many will be glad to give you their input!

When you first log in to the SCS Forum, you will see a 'New Thread' button at the top left part of the screen. Click on that and that'll get a new thread going!

Caring
Rae

Hi there luvdachsies,

You're very welcome to our forum, like Rae said we are a friendly bunch that like to help and support each other through our good and bad days. We always have questions and someone might know the answer.
At the moment you are feeling your post-op pain and this isn't nice but please God over the next few days and weeks you will begin to feel the benefits of your implant. A Dr once told me about a theory he had and that is your body only feels any one pain at any one time and this is always your worst pain... I guess all of us on this site could argue that one!

Please do come back again and feel free to start your own thread.

All the best,

Sophie

I've noticed that many postings on different forums tend to have a lot of negative comments. Balance those with outcome studies and remember that people with positive outcomes tend not to post.
I'm scheduled for a SCS trial on the 30th. I am excited! I'm 59 with severe Osteoarthritis in my lower back. Shots and tramadol can't control the pain anymore. Only one surgery and that was a laminectamy to return strength to my right leg. Dr said it would not help with pain. It worked. Right leg got much better.
My pain is in my lower back and butt spreading to my hips. Funny how it has never been in my legs.
I have two friends with SCS and they love it. I didn't know this until after I learned I was to be offered one so they did not influence the decision.
My biggest fear is "What if it doesn't work?". I'll happily accept 50% reduction in pain. I have only occasionally been forced to use drugs stronger than tramadol.
Stronger drugs make me sick and fuzzy and I can't work. Some people withdraw from tramadol. I don't and I don't know why. I do hope I can ditch all pain meds after doing this.
I do hope you have good effect. I'm hoping to return to a life more like it was 6 years ago. I still work but I don't volunteer with my therapy dog nearly as much as I was. I only go to the library now and totally avoid the hospital where I have to walk to far.
God bless and let's pray for each other.

I had trial and implant a yr ago this month.. Wonderful and life changing !Ironicly my perm implant surg was jan 31 10 and my birthday is feb 1 63 !! What a perfect rebirthday it was ! I have ZERO pain from my debilitating siatica ! ZEEERRRO ! 0 ! The only time i had pain is when my SCS needed to be reprogramed and i had to keep it off fro 24 hours. Allmost instant return to a time I never wanted to recall . Only meds I take are 1 flexaril in am and 1 at bedtime. No pain pills at all not even tylenol !! God is good !!! And i thank him everyday for my new back ! There is very little iI can not do and that includes returning to work on full duty no restrictions ! When one yr ago i was forced to look into my med retierment benifits ! Again God is good and as I type this I smile and pray for you and all others who have the hope the SCS is right for them !!!! Thinking of you Paul , Chupachickie

It is SO great when someone like you comes along to share their success story! Thank you! There are certain people who are of the mindset that SCS is a bad thing, without taking into consideration that there ARE plenty of successful outcomes.

Congratulations on your newfound happiness!
You rock!

Rae

P.S. my b-day is 1963 also