So I decided to go to another doctor to get a second opinion. He confirmed CRPS in my left leg and ankle. He wants me to get a nerve study done and have me get a Neurostimulator. I am just wondering everyone's thoughts and opinions on this type of long term therapy. Have you tried it and did it work? How well did it work? What questions should I ask my doctor? Things like that... I am very confused right now and trying to get some information. And trying to make an informed decision. Thanks

I'd start with asking how long he has been doing that procedure and how his patients do LONG term after the implantation of a SCS.

I know that people who do well and whose pain is well managed, by whatever means, may tend to focus more on living life than on posting here.

The vast majority of posts that I have read on NT over the years have been SCS horror stories, not success stories. I have read a few positive SCS stories, but they have been from people who have had the implants less than 2 years. I've seen too many of those "positive story posters" turn into "horror story posters" after time went by. That REALLY concerns me.

I would do a search here on NT to check the anecdotal info on our members.

I would consider that there could be more success stories, they just don't post at NT.

I'd do a lot of internet searching for studies on the LONG term ( > 2 years) results of those with implants for RSD.

Good luck, Angelina.

There is a sticky at the top that will lead you to the scs/pain pump forum. I do not know the long term effects. I've had one around a year and one a month. I did lots of research. Take a look. I will honestly answer your questions. I had a revision. It was due to a fall, so it was my own fault. I will say this. Technology is getting better every day, and mine are wonderful. I was wheelchair and cane bound last year. Since my implant, I have walked 50+ miles and got to enjoy life. It is not a cure all. I still take some meds. It's not perfect. I still get tweaks from my rep, but I'll trade 2-3 years of feeling good to being back in the chair. Anyway, I hope you will visit. There are many viewpoints and stories. Have a great night!

TK

Hi Angelina! Sorry you are having to deal with this. There are LOTS of success stories on NT. Hopefully some of those folks will chime in soon. I had two spinal cord stimulators (cervical & thoracic) implanted June 2011. That following November, I had a revision on the thoracic stim. Because the leads migrated, they had to change them out for paddle leads. They are much more "secure". I do not regret getting the SCS's implanted. Yes, I have had a few issues, but they have helped me greatly. I regained the use of my hands, am able to move my left arm more than I could prior to the implants and they helped with desensitizing the areas they cover. I am not pain-free, but they cut the pain down quite a bit.

If I were you, I would ask your doctor how many he has implanted. You definitely want someone experienced and someone you are comfortable with. Talk to him about implanting paddle leads. Also, talk to the rep. I have St Jude stimulators and the rep called me prior to the trial and implant and explained everything to me in great detail...it was a very helpful conversation! The good thing is that you can have a trial prior to the permanent implant. The trial will give you a pretty good idea of how it will feel and if it will help.

Do your research so you can be comfortable with whatever decision you make. I did my research before I could be comfortable with my choice...that is actually when I joined NT.

All the best,
Nanc

Hello I guess I am one of the success stories. I am on my 3rd unit. I ran through the 1st battery, got a new one, fell a year or so later pulled my leads lose, got a rechargeable unit have about 2 years left on 9 year battery. Plan with my doc to place one after that. I am having pain in a different area spread RSD after yet another fall, current unit will not cover area. Doing diagnostics for a nerve ablation for that site. If that does not work will have a pain pump placed for that area.
z

My advice would be not to get your hopes up til it's a more definite "Yes we're going to consider this properly". I had 4 doctors suggest it to my pain clinic who have said maybe, maybe, maybe, oh wait, no. They say it is not successful on more than a small area/one limb max (and doesn't work on back pain at all but that's not relevant to you). I don't agree, but at the end of the day he's the doctor and gets final say over my body. Another thing to consider is that if I'm wrong and he's right, what happens if the CRPS spreads to other limbs? My argument would be that having one limb less to worry about would be a miracle. But again, we don't get that final say, they do. Not a pleasant feeling when there's no hope of any future treatment other than counselling.

You're getting some good input here. There's a forum here specific to SCS discussion, it's located in the "Medications & Treatments" forum, listed as a subforum. Here's a shortcut link to take you there:

http://neurotalk.psychcentral.com/fo...ysprune=&f=118

Someone mentioned the link at the top of the RSD forum, it's up yonder in the stickie's. That'll get you there as well.

It's good to read the diverse group of testimonies so that you are aware of the 'good' and the 'not so good'. I've had mine over 3 yrs and love it. It does a great job of covering over the CRPS/neuropathy in both legs and lower back. The soothing sensation of the stimulation is wonderful.
Several have mentioned the possibility of crps spread, so you ought to bring that up to doc.
Make SURE he's not pushing you into this too fast. SCS is usually used after other modalities have not succeeded. If you've had good response to SNB injections, that's a good sign that you'd react favorable to the SCS....in my case anyway. I can't speak for others tho.

I wish you the best as you venture down this road and I hope to see you over on the SCS forum!

Rae

What is SNB injections? I have had lumbar sympathetic injections and responded well to those, except for the last one which made my CRPS spread to my whole leg. What other modalities are there?
Angelina

Snb=sympathetic nerve block I believe. I did not have success with these. Others have. RSD is so different. There is a lady n my group on Facebook that swears by electro convulsive therapy. What works for some might not for others. Whatever happens, I hope you get good pain relief! RSD is horrible!!

I have CRPS in left hand and arm and have had 5 sympathathetic nerve blocks (stellate gangleon nerve for arm area) and some have worked better than others. Numbers 2 & 3 did the most. It decreasd the swelling and helped the skin condition and helped the burning about 50%. The others may have just overlapped so therefore I just did not notice as much dramitic improvement.
I guess I'm nearing my limit on those because they are pushing me to get the Spinal Cord Stimulator (Neurostimulator) too. They even brought in the Company rep. to the Dr.'s exam room to give me the presentation for about 1/2 hour.
I too am following the progress of others on the "sticky".
I'm really afraid of having something like that in my spine. The rep. tried to "gloss over" the part about the permanent implant takes 6-8 weeks for recovery until you can bend, lift or twist. While the trial is in from 2-7 days same thing plus no showering or bathing.
Will post more as soon as I find out.