saw that mic and brooke had put in or were thinking about putting in spinal cord stimulators.  my dr has recommended me to have one put in for my rsd in my rt arm.  how has it changed your lives and has it worked in helping the pain for anyone else out there??  right now i need so much support and guidance from people who know where i am coming from and that can actually feel my pain. in the past i have had a hard time asking for help when i have needed it and now i am screaming for it and no one can help me.  i just want this to all go away.  we may need to go through the steps of greiving but i don't want to because i don't want to have rsd and i don't want to be in pain and i want my kids to be able to hug me without asking me if they will hurt me first and i want to make love to my husband without pain shooting through me.  i am only 29 and put myself through college only and now have a successful career i love that puts me in pain when i do it (ultrasound) and i have rsd in my rt arm. now i cry at work but have to go or i might lose my beautiful new home and the person who it me in the car accident doesn't have good insurance.  I know i am whining agian.  1 more ? -- does anyone know about if i get worse and can not work is rsd covered by social security as a disability?

 

thanks for letting me vent agian, i probably will a lot until i get it all out cuz it feels so good to have a place to go where people understand.

 

kelly

My son has a spinal column stimulator [scs].  [He has RSD in both legs from the hips down and is in a wheelchair].  He first of all had a trial with one lead to see if it worked.  When the Medtronic rep programmed it, it did not work but when the doctor programmed it 3 days later, it worked incredibly well and we were all thrilled.  So, he had the scs iimplanted which was INCREDIBLY painful for weeks and weeks.  The control pack was implanted in his butock which caused a lot of pain and he could not lie in bed properly either.  With all this pain, the device has never worked.  It has been reprogrammed at least 3 times with no better result.  It also is unpredictible.  My son had the right lead on an 8.5 strength and could not feel anything.  When the Medtronic rep looked at it, he told us it was on 8.5 and he turned it way down before putting it on again and turning it up slowly.  At 4.5, my son started feeling it.  The rep turned it up to 4.6 and my son started yelling for him to turn it off bc it was so strong.  The rep went to the doctor to tell him he could not program it because it was too erratic.  The rep said the device was working properly and that wa the first thing he had checked when my son said he had been unable to feel it.  The doctor took x-rays and said the leads were perfectly placed and everything look perfect.  They have no explanation for what happened.

We returned weeks later and the doctor tired to program it.  Now my son can feel the scs but it does not get rid of the RSD pain and the left lead hurts him in his abdomen [this was a problem with the trial but doctor said he would be able to get rid of that pain my putting the leads in a different place]. 

The result is that my son refuses to put the device on in case it increases his pain.  The Medtronic reps say it is very unusual and 85% of those who have success with the trial have success with the permanent device.  All I know is that my son had a LOT of extra pain for nothing and in fact it was harmful bc he went into a depression after it did not work as well as he was unable to do the other treatments [alternative treatments] before, during and after the operations.  Before and during bc they did not want him to take any supplements before the operations and after bc he was in too much pain for weeks to go to his appts.

I don't want to put you off trying the SCS bc it helps some people but be prepared to go through much more pain than they ever tell you about and for it to not work even though the trial worked.