Can anyone advise me??
 

Hi, I am new to the forum and was wondering if there was anyone who could advise me? I am due to have a trial spinal cord stimulator this summer. I have had nerve damage and CRPS in my left foot for eighteen years now and have tried numerous treatments but to no avail. I'm currently on a mixture of morphine, ketamine and zopiclone to name a few!
I was just wondering if anyone has had the trial or even the full operation and could tell me how they found it, did it work? What does it feel like? I would be really grateful if anyone could help
Thanks, Rachel

hi Rachel,

There is a separate forum for SCS on Neurotalk, see the link at the top of the RSD home page.

Good luck, Sandy

Hi. I think from people I know who have had the scs it really varies from person to person. I am assuming since you have had rsd for so long you have tried a lot of treatments? You stated you are ketamine but have you done the infusions? How did you respond to things like blocks etc? Do you feel comfortable with the doctor who is doing the scs and does he or she treat a lot of rsd patients? I think that is very key.
Welcome to the forum by the way though sorry you are facing this

Hi Rachel,

In the past there was a thoroughly researched post regarding the effectiveness of spinal cord stimulators and CRPS from a lang standing NT member (fmichael). When I saw your post I tried for two hours last night to find it without success.

I did, however, come across an abundance of posts regarding the horror stories of CRPS spreads caused by implantation of SCS, failure of leads and batteries, migrations of leads and batteries, new sources of CRPS at the incision site, and spread of CRPS due to failed SCS.

The most important section of fmichale's post was that in addition to the above mentioned issues, there was no research to demonstrate that SCS had any effect on slowing the progression of CRPS or long term benefits as regards pain relief.

I will continue to search for his post to bump it up.

I know that because of fmichael's post I challenged my pain management physician to provide me with research citations demonstrating the effectiveness of SCS for CRPS. Although I have reminded him at numerous appointments he has failed to produce them. I spent weeks reviewing research myself (although unfortunately I did not save any of it) before refusing to have a SCS implanted.

Twenty five years ago a dear friend had a treatment for CRPS that was, like the SCS today, very much in vogue, sympathectomy. The sympathectomy ignited a spread to the other side of his body, similar to the effect of sympathectomy on thousands of other CRPS patients. It took twenty years for the research to clearly demonstrate that sympathectomy was to CRPS what the Dodge Aspen was to Ralph Nadar.

At the risk of setting myself up for severe criticism I must caution you to do your own extensive research prior to making your decision.

I am guessing that the SCS sales reps that frequent my pain management doctor's office bearing staff lunches, fruit baskets, etc. is repeated throughout the country. I wonder how many of those reps bring solid research along with the plastic models of spinal cords for physicians to share with patients. Obviously my doctor only got the food and the plastic spinal cord.

The frightening thing about spinal cord stimulators and CRPS is that you are playing Russian Roulette.

If nothing else spend a few hours going back to the very first post on Neurotalk and just move forward and review any thread containing the word spinal cord stimulator.


Although a bit dated you could also touch base with my very first research site in my own journey, a doctor named Hooshmand who dedicated his life to treating CRPS patients. In addition to SCS info you will find other useful CRPS material.

Take care!!!!

Hi Daniella, thanks for your reply. Yes I have had 6 opeations on my foot, I have also tried numerous drug trials and had Intravenous guanethidine blocks and sympathetic nerve blocks. These helped a little but only for a very short time (up to an hour) and the relief wasn't anywhere near good enough to continue having them done. I'm kind of at the end of the line now, and really hoping this will help.
I'm being seen by a doctor in the Walton Centre Liverpool, he is a senior lecturer in pain medicine and seems to really know his stuff
Thanks again for your time :)

Hi, thanks very much for your time. I hadn't heard that they can cause the CRPS to spread, I will definatly look into this and have a read around the forum. Thanks very much for looking for that thread for me, really appreciate your time! How do you manage the pain?
Thanks again, Rachel :)

I too was suggested the scs. I then went for a couple more opinions. I chose for myself not to do it. One of my pain doctors though it may actually increase my pain. I also feared the spread to the area where it is implanted. I hate to say anything negative to you because I do know someone who did benefit from it.
Can you go for another opinion? I would also ask the doctor about if you got worse or this spread what would be done?
Did you do the ketamine infusions? Or is it oral you are taking? If you do the scs I too hope you get relief. It sounds like you have been through a lot and I can understand the point you are at cause I am in similar place of needing to do something more.

Hi Daniella,
I have only had ketamine orally, I haven't had the infusions, to be honest I hadn't heard of them until now. I have heard of ketamine comas, which I believe they do in Germany. I will keep your post in mind, and will research around a bit before I have it done

Thanks!

My husband just had that done and i am not a fan of it but I know that it is different with everyone, We are just on the trial now and come monday i am hoping that they will have a better idea for him. Please keep us posted on how it works for you:grouphug:

I totally agree with you...when I went into the doctors office where I was to get the scs trial his office looked like I stepped into a Sprint or ATT store..It was crazy. Huge billboard like posters showing the latest and greatest scs equipment...I almost asked him if they had a app to start my car with it...When the doctor showed up all he talked about was the new Boston scientific with the new auto timer function to stop it after 20 minutes..I almost had to ask him if actually wanted to see my RSD infected leg...I actually did the trial with that hack....Oh and when he found out it didnt work on me his demeaner changed like a flip of a switch....He wanted nothing to do with me.....And actually blamed me for it not working.. Bad experience all around....Sooo if your in Fargo ND just PM me and I will give out the name of the quack...I know that its harder for the scs's to work on lower limb RSD...Thats just what Ive heard...Everyone IS different...After my experience I learned to do my homework when its come to doctors now.