RSD is a strange condition in that some procedures work for some not others. Catch 22 also fits this disease in so many ways. My wife made up her mind years ago (after doing extensive reading on RSD) to avoid evasive procedures. She did except physical therapy and ketamine infusions. She avoided surgeries, blocks etc.. Her thinking is the disease will spread most likely so let it take its course without speeding the process up with temporary fixes. There is a logic in this thinking, but I'm sure for others it's not. Many doctors did not like my wife's thinking on this and disregarded her as having the pain in her mind instead, even though she showed most physical symptoms of RSD and a severely crippled right arm and hand. By not allowing doctors in the early stage of her RSD to poke and prod, cut and stick etc. my dear wife was severely neglected by doctors. However, over time the disease has spread but I think she may have been worse off if evasive treatments took place.

SCS not for me
 

Here is my thought.

I went to my hand Dr. 4 months back to see about having joint surgery to my thumb on my left hand. She said that now that I have been DX with crpsII she feels that this is to evasive and will cause my crpsII to spread over to that hand.

Now having a SCS implanted is evasive as it gets as far as I am concerned. But my PM Dr. is more then willing to do this surgery without a second thought. If one surgery that would make my life better for me as far as getting the left hand thumb joint replaced should not be done why is it O.K. to do the SCS surgery.

I will take my time and changes with not doing the SCS implant because once done anything that needs to be looked at by a MRI cannot be done so you are left with having more unneeded surgery's therefore causing more spreading of the rsd/crps. I hope this is making sense to everyone.

I am going to go to the Mayo Clinic to see what other options I have to help with my nerve pain.

Id avoid getting
 

I had a SCS put in 5-6 months ago for my RSD in arm. Did the test period for a week, It helped a little bit but shocked me everytime I moved .

I told doc about it he said that will go away when permanenetly implanted , I really didnt want to go through with it but since Im On Work Comp I had to .

After 2-3 weeks of having the Perm in, I went to Doc office and Medtronics woman was there to adjust the settings , Because it Was still shocking me with movement , So she strapped the Reciever part to my lowe rback and started to adjust the thing.

Make long story short she electricuted me for 10-15 seconds I couldnt move and was locked up , All I could do was scream Turn the (Profanity ) thing Off ! Said it 3-4 times before she got it turned off .

Once she did get it off I fell to the ground , She ran out of the office never to return or be seen again . I compare it to be shocked by a stun gun , though never have been but seen people who have . From that day on I told Doc Work Comp and anyone else I will never turn that thing back on and it hasnt been back on .

Now I been waiting for Work Comp Approval to remove , They agrreed but sai dI Need to see a psych first which I did then waited another month or so , Then they said I need to see a NEW Doc Which I did .

And Here i Sit about 5-6 months later waiting for approval to remove this thing . Also I have not mentioned the Battery is extremely uncomfortable it feels like it wants to push right out of my skin and you can see it and feel it through the skin .
Now I will decide NOT Work Comp what I will and wont do , Dont care about them not paying or their threats , If I dont Like something it aint gonna happen !!!!!!

Sorry above is what happened to me
 

What happened to me probably wont happen to anyone , Its Just my luck.

I would add that the 3 weeks I had it in , It never really helped a whole lot, The shocks I would get where more annoying and sometimes quite painful.

Again just my exp , We each need to make our own judgements on what to try .:winky:

Sorry to hear about your issues with your scs DONTTOUCHIT. I'm so tired of hearing about those who have RSD and psychs. This has happened with my wife who has RSD several times. I believe psychiatric help is a good thing when it is perceived as help, not when your judgement is called into question when one has a confirmed severe pain disease. Just seems to smack of the former Soviet Union. I once mentioned this to my wife's doctor who wanted her to see a shrink because she refused to take psychopathic meds in-which she has done before and made her feel very sick. One other thing about the SCS that may or may not be true but both my wife and I have read is the SCS works better with the lower extremities than the upper.

Jim that is it exactly , I wasnt crazy to get the thing put in , Now all of a sudden I am nuts wanting to take the thing out? LOL The system is what is crazy not me . In the above post I meant to say I had it TURNED ON for 3 weeks not implanted in me for 3 weeks .

If WC would just stop dragging their feet on everything , Youd think theyd make more money rather then pay me too sit here and wait months for approval to take a breath.
To get back on the Psychologist , When I met with him he said That I wasnt a good candidate for the SCS LMAO Because I had problems with the temporary one . SO again WC makes fools of themselves instead of just treating me and moving on . Ill keep ya posted when they finally to decide to remove this thing .

i totally agree, tried it three times. each time got infected.once out the pain was back in a matter of minutes.worse feeling i ever experienced in my life,brother use to crack on me cause i had a titanium battery in my ***.i was in so much pain just was looking for any kind of relief.totally advise against it,just the procedure alone was an horrible experience,plus still had to take meds,with it in

Finally got my Medtronic remover in early part of November , After 5months of waiting. The battery location is still giving me all kinds of problems yet, Feels like my arm that has th crps in it hope it didnt spread to that area just above waistline

Psch Eval Finished
 

I've had a back surgery that failed. That surgery was to fuse my lumbar, L2 - S1. I did not have that surgery until 5 yrs after my injury, my decision. After surgery, I had complications, massive blood clots throughout lower half of body. Almost died and in hospital & rehab for 30 days. I now have pain in my back, numbness & pain in left quad muscle, throbbing pain behind left knee area, and numbness plus pain in bottom of left foot. Some days are okay, some aren't. Pain mostly between 4 & 8. Use timed release morphine sulfate and oxycondone for breakthrough and 7.5mg Cumadin daily for the clots.

Just saw the psychologist this week. She okay'd me for the SCS implant. I'm on WC as well. My "psychiatrist" thinks I'm not. I want to dig this brace out of my back as it is now.

I'm scheduled to talk with the PM next month about SCS trial. Don't mind the trial so much, but I do not want more pain or another surgery or renewing the desire to physically remove the SCS.

I've adjusted to my pain and can function okay, but not work. My working days appear to be over. I have a cane I use to help with the bad leg and foot drop issue. I have requested a wheelchair, sport type, to move around shopping malls and outdoor events as I miss doing those.

From the overall responses I garner that most aren't having great success with their SCS units and that the risk of something occurring during the procedure is pretty high.

What is a person to do?

Be sure to check out the SCS link. There are some really knowlegable (sp) people on that forum that can give you some good advice. I am about 6 weeks into my implant and am having a pretty good result.