I think I am going to break down and chance getting an SCS. My RSD is left knee and below. I have been through several sympathetic blocks with limited success and am using a TENS unit in order to return to work without taking narcotics. However, I still hurt a lot and have the TENS unit so high that when I take the patches off at the end of my shift, I have actual electrical burns, triggering yet more flaring. My whole left leg looks like I have been attacked with a large postage stamp!
Am totally scared...have put this off because I wanted to exhaust all options and am petrified that it will spread. The leg is bad enough, spread might be the straw that broke my psychological back. Since the area is (relatively) limited and all low (as opposed to the experience that I have read from others who have had them for full body or neck problems), do I have less chance of spread and long term difficulties after it's implanted? How long until I can get back to work? (I'm a nurse in an ICU, so it's physical, but am doing it now despite problems with pain) Are the burns on my legs making me flare? The welts and redness remains for a couple of weeks and the texture of the skin is rough and itching like crazy despite antihistamines, and every topical thing under the sun.

i think the scs unit is a personal choice you have to look at the pro and con of any procedure. i do not have the scs but my dad does, for him he didnt like it he had fallen and the leads came out so it was no use to him, now he is having it removed. i have heard people say it was great and then for someone else it was not. i cant give you any personal advice on the scs unit but i can tell you do as much research as you can so you can make a choice that is right for you. good luck and take care, michelle

one thing i forgot to add you said you have a phyical job? have you told your dr that? because my understanding of the scs unit is that you cant lift, carry or if you bend wrong your leads could come out. someone correct me if i am wrong but i think you have to be really careful when you have that also you can no longer have a mri only a ct scan and xray.

Just make sure when you have the trial put in that you get at least 25% pain relief before accepting the real scs. the docs say you should get at least 50% pain releif as time goes on.

i got maybe 10% PAIN RELIEF. and they still wnet ahead with the scs. it made me worse for 3 or 4 months. i wish i could get it out of me. next they want to put a drug pump in but after reading that 50% of patients have no relief after one year of having a scs and 45% with a drug pump, i think i will try hbot first.

my point is to be strong enough person to say no i dont want the scs if you dont get at least 25% PAIN RELIEF. the thing you have going for you is you are still working and i know some people that are still working saying that without the scs they would not be at work.

good luck,

Mike

I am so sorry things have gotten to this point with you. I wondered how things were going since you went back to work. I too was scheduled for a SCS for four extremities, I went through all the testing for it and passed. But, continued my research up close to the date of surgery and changed my mind. So I can't speak from personal experience and I know this is a personal choice. During my 20 years of CRPS i have spoken personally to many who have had this surgery and ultimately were completely dissatisfied. Most having it removed or wishing they could. I am aware of your desire and need to work. But, I have one request, because I really care....that is please call some people who have the implant and speak to them personally. When I was in Texas on my last dives with them, there was a commercial pilot with RSD/CRPS that had an implant and was doing HBOT, as he put it as his last resort. His pain levels, like mine were way out of control. I haven't spoken to him in a few months but the last I spoke with him (his wife is a nurse) he had done the HBOT and she put him on a RFD (raw food diet) and he was doing much better. He suggested I start juicing again. I guess what I am saying is please carefully consider this. I'll try and call him this week to see how he is doing. He had turned his stim off during HBOT and reduced his meds. I'll get back to you. Please take care. Di

I agree this is really a persoanl decision. I had one for full body RSD it was in for 3 years I just had it removed in Nov of 08. In my opinion it isn't designed for full body coverage. You are only covering one leg it might work for you. Ask how your posture will affect the strenght of the stimulation? My leads where the lenght of my spine and when I turned my head it would turn up the stimulation when I sat down it would turn it down. I was constantly adjusting the stimulation.

Make sure you understand the remote and how to change the strenght of the stimulation.
Ask your doctor on a scale of 1-10 (pain scale) where should your pain be if you proceed past the trial?

I was never told not to lift. I was only told not to have it on when I was driving. Mine was extremely sensative to posture.
I hope you get the relief you are looking for and that you will be able to continue to work. Giving up my job was as hard on me as accepting I have RSD.
May Gob Bless You!!
Sherrie

def try the trial... although that may not always help...

i had pretty much full relief when i had the trial- then my rsd was only from my finger tips to my elbow. well when i had the perm implanted it spread up to my shoulder/neck area around where the top incision is.

full recovery for me from the surgery took about 3 months... till i was able to fully move and function normally.

my back and hip would hurt in the cold, my back would get stiff a lot..
my right leg would go out occasionally cause of how the battery was placed... i'd be walking and all of a sudden i'd be on the floor.

i'd get randomly shocked from it...

i didn't get any relief from the stim.. my pain got worse and more intense along with the spreading. i ended up turning it of after 6 months and had it removed a year and a half after having it put it. i went to see the people from medtronics several times to have it reprogrammed... it never helped...

i wouldn't reccommend it to anyone because of my experience. have you considered a pain pump? i have a friend/mother type that has rsd in her foot/ankle and she got the pump and absolutely loves it.

I have had 2 implanted. the first one the battery was in my butt, and started moving. Somehow the leads ripped out of my spine. Had that one removed and at the same time had another one implanted. That lasted 3wks until I developed a MRSA infection and it had to be taken out during an emergency surgery. I only had rsd in both feet and legs, now I have it throughout my back and it is moving into both shoulders. I am looking into a pump. I really think the pump is a smarter way to go. (IMHO). I was still taking pain meds with the scs. So I had all the grogginess and sleepiness that goes with it. With the pain pump such a small amt of drugs is in your system, that it never has to go thru the body. there fore you tend to be bright eye and bushy tailed. It has the same long long recovery as the scs. It is also harder to find a dr that will put the pump in. I'm not a dr. and please research on your own, and remember, these are only our personal opinions and experiences. Always go with the trial and see what kind of relief you get. If you have any questions feel free to pm me.

Hugs
Mary

Thank you for all of the advice and kind remarks-I really need info and I appreciate the time that you all gave to me.
Found out today that it really doesn't matter what I want. My employer has informed me that I am not permitted any length of absence until 12/2010. My leg is on fire and every night I am scratching it to the point of bleeding and scarring. My pain doc started me on Cyproheptadine, an antihistamine that is apparantly popular in Europe, but obviously is not an option for me at work. She does not recommend HBOT to be, only really saying that in her experience she "has never seen anyone benefit from it." She tells me not to use the TENS, but it is the only thing that even makes me survive work and the rest of the time I just bite my tongue. I am so frustrated and angry-there are no words. It seems like the only thing I am seeing is people closing doors and telling me that there is nothing they can do for me. As we speak, I just got home and my leg is burning and bleeding. Don't know whether to go postal or cry. Anyway, at least the SCS decision will be on hold for about 18 months.

How can they tell you you can't get medical leave. You could go leave eithout pay. I was working when I first had to go out,(it was for a group of drs.)they said, oh yeah get better, but HR said they couldn't hold my position, that I could come back and reapply when I was better. I reported them to unemployement, and after a 3 way phone call, it was determined that they could not let me go because of having to be off for medical reason. Needless to say, they weren't happy, but they had to go along with the determination. Please look into their decision. there is no reason you should have to suffer because your company is being a butthead.

Hugs
Mary