Reflex Sympathetic Dystrophy Support Group

Thank you so much for all of your responses. I have read stories now about the SCS and how when somebody fell or was doing something that they were not suppose to do with the SCS in that it shifted up/down their spine. Isnt that a concern to those that have it or to those that are considering taking that risk? I just know that a trial is a great idea but then you have the knowledge that (if it does make you feel great from doing the trial) you have a outlet to make the pain go away but then you have a even bigger decision on if you want to chance the side effects. I know that its not my choice what he wants to do to make his life better and i will support that but I am VERY concered with the side effects and the stories that i have read. we just cringed after we read those stories. Any advice?

PetriaPain, Welcome to our group. We have many members who are supportive families and friends and you are quite welcome here. I am one of the people who had the SCS removed because after many years of it keeping my good arm from going fully into RSD/CRPS with all it's pain I fell hard and the leads migrated down my back. The reason I did not have the leads replaced so I could keep the benefits of the SCS is that I have many other medical problems, am approaching 60 years old and am extremely chemically allergic. I react to pain pumps with more inflammation. We feared I would do the same with the newly replaced leads of the SCS. And my primary doctor wanted to be able to do MTIs, the one thing folks with SCS cannot do in terms of medical tests. I am at a medical place where my docs wants, feels he needs to be able to do MRIs when I need them now. So I could have had the leads replaced, part of me wanted to but I don't want to start up any more of my particular autoimmune responses and if my primary needs to be able to do MRIs...Choices again.

But please know, especially with this syndrome, each of us is unique in our experience of it. There is no such thing as a normal RSD/CRPS, no text book cases. Each of us has to make intelligent decisions and try to live with the results if that is possible. If not, change treatments. The SCS is not an irrevokable choice. But it helps a lot of RSD/CRPS patients get the pain down to a liveable range. That is the job of the SCS. Don't let our stories scare you away from supporting your husband through this if it is what he chooses. Work to help him stay within the doctor's orders until the leads have a good chance to scar in. Help him learn to adjust it so it serves him well yet allows him to sleep at night. If he chooses another therapy you are doing the right thing by collecting information and our stories. I wish I had a family member who was able to support me as you are to support your man.

Rev.

PetriaPain, I have to be honest...I am very nervous about the SCS. The thought of never having a MRI again also scares me. I have read some scarey stories about the SCS but I have also read them for Ketamine Infusions so I think with any procedure there is bad and good to both sides. You are always going to meet people who have had positive results and also negative. What I keep telling myself is that there is no harm done in doing the trial. I want to see how it works, believe me if it doesn't...I will not pursue. I am also nervous because I am not sure how it will feel, not sure if I can deal with the vibrations that it causes but who knows, I don't know what I can deal with or what it will be like unless I do the trial. I totally agree with ALL of your concerns but I feel like I have to give the trial a chance.

Hope this helps. Please feel free to contact me at any time. Right now I have given my doctor the green light to go ahead and schedule the trial. So now I am waiting for all the paperwork and insurance approval to go thru before I get my date. I am very nervous but also very anxious to find out if it will help me.

Sending hugs,

Sue

Morning Petrea

Welcome to our Group!

I've been away a few days and am still welcoming new members.

It wasn't too much of a concern for me to go ahead and have the SCS back when I did in 2006. This is why it's so important to research and listen to possibilities. My SCS shifted as well. I went ahead with a revision to implant an additional lead at same time we fixed the original.

Since I'm not able to be very active it was a good choice for me. There's minimal risk. This year I'll be having another surgery to update my current unit.

It's in the first 8 weeks after surgery that one must be the most careful. It takes that amount of time for the lead/wire to take to the spine otherwise right off the bat there could be complications.

I know the idea seems scary, but when the pain is that bad day in and day out, one has to really search deep inside them and make the best informative decision they can.

I have no regrets even through the challenges I face and have faced by having it.

I wish you well,

~Twinkle

Hi Twinkle,

Your reply is also very helpful to me too!! I am nervous about the leads shifting, I have 3 small kids, yikes!! But we have to do what we need to do.

Sending healing hugs.

Sue

Most welcome Sue

Just be very careful with your post op instructions. No bending, twisting, abrupt turning, etc and you should be fine. You won't want to do any of this during the trial either because your lead is temporary it can slip out. Take those 5 days to relax and bask in any pain relief that you can.

My husband took me to the auction (our door flea market type thing) I'd walk a little, sit, walk a little. I was really nice although I did stand too close to a metal display case which caused the stimulation to increase on it's own. This isn't out of the ordinary.

You'll learn soon enough what your extra restrictions are. Some people can't stand too close to a microwave, I'm able to. It may have to do with a higher power vs lower power. Ours isn't a high powered one.

Learning these things are so worth the pain relief if it works for you. I am still on meds. I wasn't able to let them all go. Some are able to replace the meds with the SCS. Others decrease and use in combination.

In order to go through with the permanent they usually want at least a 40-50% decrease in pain. A psychological review is also generally always required as well.

I wish you the best of luck and look forward to any updates

Hugs,

~Twinkle

Thanks Twinkle! I appreciate all of your help and will keep you posted!

Hugs,

Sue

hello hope im not a bother...i just got an injecton yesterday...he told me if this one dont work then he wants to try the leads..im a tattoo artist well when i can be..i also have a back piece that isnt finshed..i started it when i first got rsd and about went in convolsions..just to get away from the pain..always burning myself with with ciggerretts until they go out..but the doc said hell just put 2 lil cuts at the bottom of my back to insert them..how do they stay charged..im calling him today to see if he can do this any quicker..i have no pain meds for 3 weeks ben stolen.having hard time dealing with a life i dont want anymore...please nobody do what i say or do ..but with this rsd and rhabdo and the dropfoot my life feels like its over with i got court on the 28 might be in a cell for 4 years for not paying support ...waiting on disability...and if they do i lose medicaid and any chance for disability...i got heating and cooling pads..can anyone nows whats best....and ii have love for you all and i hope you can all can survive this.....cause im tryind

Medicaid will still be there, they go by your income, not you disability. Please consider not using ice or heat. you never know with RSD how this will affect you..depending where your injury is...that is??

Take care and get you Dr.s point of view..I went through texture therapy with my foot and it did help to desensitize it.

My daughter has had the ketamine infusion and has been painfree for weeks now. pain FREE. The reason I think a lot of doctors like teh SCS is there is BIG money in it. Ketamine not so much

There are many doctors using ketamine now. Contact Jim Broatch at RSDSA org for more info.