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.

On that note, check out a post I put up a couple of years' ago on the greasing of palms that clearly surrounded the whole medical implantation industry. Scs cost 57,000??? R u kidding (post #13) http://neurotalk.psychcentral.com/thread97952-2.html I suppose the only "good news" in the picture is that Medtronic's sales of SCSs fell by 1% in 2010, over the previous year, suggesting that someone is finally getting the message. Medtronic’s Profit Falls 19 Percent on Layoff Costs, THE ASSOCIATED PRESS, May 24, 2011 http://www.nytimes.com/2011/05/25/bu...mplants&st=cse

Seriously, for anyone interested in this area, you should check out the articles posted by the RSDSA on its Medical Achieve page, under the heading Spinal Cord Stimulation and Neuromodulation at http://www.rsds.org/researchlibrary.html#SCS. When you cut through the fluff - and there are a lot of articles by doctors who serve as paid consultants to the industry, it is absolutely uncontested that in the best possible case, a SCS will provide relief for no more than three years, time in the early stage of one's illness that you could otherwise have used to pursue therapies that are not as effective once your RSD/CRPS has become "chronic," i.e., old and cold.

Mike

ps And I sure would like to know how my old post - the one Ballerina referred to - was removed from NT. Because it's gone. And I'm 100% convinced that NT management had NOTHING to do with it . . . .

Is this the thread you were looking for Mike?

I found this one by using the search option but if this isn't it, I'll look again for you.

http://neurotalk.psychcentral.com/sh...ors#post746529

I am very concerned that you believe that your doctor "knows his stuff" but has not even offered ketamine infusions prior to suggesting SCS. Please educate yourself on alternative non-invasive treatments. Have you tried graded motor imagery, mirror therapy or tDCS?

Your best weapon against CRPS is to be your own advocate!

Please give us an update on how you are doing!

Sadly, no. Please check out my thread - Searches limited to 500 posts (by name at least) - in Community & Forum Feedback at http://neurotalk.psychcentral.com/thread149888.html

Mike

Many major hospitals such as if you go to Cleveland Clinic they will not suggest ketamine infusions because they don't do them there.
I agree that one should do the least invasive and work forward from that. Any doctor who does not do that I feel is out for the $. Also what I do now when I am suggested a treatment is ask if it makes me worse what will be done or the next step? The feedback I have gotten from doctors on that note has helped me in making a choice in treatment.
Unfortunatly many doctors are out for the $ and treatments like scs and even ketamine make these doctors a lot of money. I know not all are like that but one has to be very careful. Also when one is in a bad place pain wise they just want relief but things can get worse if one does a procedure that is not good for the rsd. Sorry to sound negative but I am super cautious now from my experience with doctors etc.

My primary care physician just suggested a SCS implant for me and referred me to one of his colleagues who, as my doctor quoted, "can do them in his sleep."
I have decided that from now on when a doctor suggests a SCS, rather than to "just say no" I will ask the following question.

1) What percentage of your income is derived from performing SCS implants?

Then I will say "NO".

Drs and SCS
 

I over the past 18 months have been to 5 PM Dr.s. 3 I was set to and the other I wanted a 2nd. opinion. 4 told me before even looking at me that I needed a SCS right away. Only one said that he would have to try many different types of treatments until we have the right one.

Also the only Dr. that did not bring up the SCS told me only after asking him about the SCS that in most cases where in the upper body like hands, arms SCS did little to no pain relief. If it worked at all he found it to only work for a short time. This was meant more for lower back injury to nerves around the spinal Colin. As time past sale reps started to push these for other treatment such as rsd/crps.

All my other Dr.s back, hand, GP all have agreed with me to not have a SCS implanted due to the trauma it causes and will spread my crps II in my back and hip area.

Everyone of the PM Dr.s that wanted to place a SCS in me I asked to talk with other patients of there's that had this done . 18 months have pasted and not one name from 4 Dr.s.

My current PM Dr. is one of the 4 pushy Dr.s the only reason I go to him is because he is 4 miles from my house and being under all the meds I am taking sometimes I have to drive myself to his office so I choose the closes one to me. Until I get really good backing from folks that have had a SCS for a year or more and can answer all my questions that are proven to work well will little to no problems I will not let anyone touch me. Also I am not to crazy about some sales rep doing all the fine tweaks after. I have read so many horror story's about reps blowing off the patient. Hell I know a banker friend that got tired of being a banker in the investment area and went to work as a sales rep for a large medical firm. He my be tweeting SCS now. I know he could not find the gas filler on his car to put fuel in. My point is do we really know who is going to be the one that will help us at the most circuital time.

Bottom line is my two dogs get better treatment by their Vet then I do from my pain Dr. The one Dr. that did not push or even bring up the SCS was very good but I could not afford him at $187.00 + per office visit before anything is done.

Most PM Dr.s are not worth going to they don't really care and it shows. But I have no choose in the matter I have to go every 30 days so my pain scrips are refilled. There are good PM Dr.s out there but you have to pay a lot more to see them because they are not part of most ins plans.

I have very good insurance with great coverage and low co pay but I have found that the really good Dr.s are not part of the plans for office visits only when we need procedures done. The system still needs work.

Sorry for the long drawn out rant. Just my 2 cent worth.