Kellye,

My son at first did land therapy and the therapists constantly hurt him.  The problem was that he was able to do the exercises at the time but later he would be in agony all night and sometimes for as much as a week.  He stopped doing it because all they did was hurt him.  Then he started hydrotherapy and got a wonderful therapist who let him do as much as he was able to do.  Hydrotherapy has been really good and I recommend it.  The therapist also massaged his legs at cetain tigger points and he thinks this made a tremendous difference bc his pain level went down.  She has been on vacation for 3 weeks and his pain level is up again.  We are going today and hopefully she will be there and we can test the therory that her massaging makes a big difference.  As for PT's here in New York, I think they are taught "no pain, no gain" but if they read up a bit on chronic pain they would soon discover that it does not work for chronic pain and actually worsens it.  So, see whether you can do hydro-therapy.  It is difficult to find a pool which is heated to at least 92 degrees.

As for the SCS, my son had one put in and it did not work and he had it taken out.  The operation caused incredible pain - much more than we had anticipated and the control pack put in his buttock caused him pain down his left leg for the whole time he had it in.  So, it was a tremendous amount of extra pain with no benefit (the trial worked very well).  But, we met someone and read stories from others whose pain was reduced dramatically with a SCS.  So, you cannot know what will happen.  Apparently, it is very rare that the trial works and the permanent one does not so you could try the temporary one which is not a big deal and see how it goes.  BTW, we were very unimpressed with the Medtronic reps who do the programming of the SCS.  They could not make the trial one work, it was our pain management doctor who did that.   Linda

Kellye,

 I have upper body RSD and have had for 8 years now, I have had a total of 3 pain specialists. The first 2 said the SCS or nothing, no drugs...nothing! The 3rd Dr I have been with for several years now, he will not put in an SCS...instead I get upper eppidurals every 4 months plus take a small amount of pain meds for break thru pain.

 I know Doctors make a huge paycheck for putting in the stimulators and get a kick back from the manufacture of the stimulator makers and that is why I believe they thats all they want to do. A surgery on my left hand started and spread my case of RSD...no more surgeries for me unless my life is on the line. We all know RSD hates surgeries, needles, other injuries and the phrase "no pain no gain" does not apply to us with RSD! 

PS,

 Medtronics just had a huge recall because the leads on some models of their stimulators are deteriorating and causing trementious problems for the people with the bad leads inside their body!

I am so sorry you have been through so many states and so many doctors. I don't think it is just from state to state. I think that most doctors dont know how to treat and there is no consistancy anywhere. You used the word "try or tried" in you message and thats what a lot of doctors are doing is "trying". You need to stand up for what you believe is right for you. And don't stick around to let some therapist to torture you. I understand some aspect of no pain no gain, but they need to know your limits and respect them too. Keep looking for a doctor that will at least consider what you are saying. Also check in here, we all learn a lot from each other and what works for one of us may not work for all of us. But, heck we can "try", just like the docs can "try" too!

Peace, -Jama 

Franknberrie,

Perhaps bad leads is what happened with my son.  He turned the SCS up to maximum at home and could not feel anything.  It was still on 8.5 when we next went to the doctor.  The Medtronic rep tested it and said it was fine.  He then tried programming it and turned it up slowly from its lowest setting.  At 4.5, my son could not feel anything.  He turned it up to 4.6 and my son hit the roof yelling for him to turn it off as it was soooo strong.  The Medtronic rep said he could not program something that was so erratic and left to tell the doctor.  With all this, we were constantly told there was nothing wrong with the SCS and that (after an X-ray to confirm) the leads were placed "perfectly".  So - no error on part of doctor; no error on part of Medtronic!!  You explain why my son couldn;t feel any simulation at 8.5 and 4.5 but could at 4.6 !!!!  The doctor and Medtronic rep never have.  As I said before, we were VERY unimpressed by the Medtronic representatives.  The first two did not care at all and the third one tried harder but only after we had complained to the supervisor.

Hi lgs131,

 I have a degree in electronics and I worked with computer and electronic systems for 22 years before a carpal tunnel surgery put me on this site with RSD in both arms,shoulders and mid back(it spread) . Let me try to explain how the medtronics SCS works. First your son has a remote control that he turns up and down the electical pulse to cover up his pain signal to the brain, inside his body are the leads that go into or close to the affected nerve(or where ever the Dr wants it.) Then the leads are attached to a miniature coil pack that makes the pulse and a tiny reostat that actually turns up and down the voltage(this is a one piece unit)...it is what the remote controls. I would want to check the reostat for sticking, it could be sticking on a low pulse and stays there when turned up and then could be breaking loose and go up to the high setting in an instant. Look at it like a dimmer switch on a ligh bulb. Another thing that could cause the irratic operation it the remote its self. If it were me I would have medtronics getting it diagnosed correctly or replaced. Your son knows how it is supposed to work, it is supposed to go up and down very smoothly...the voltage transition from low to high should be very consistant and smooth in operation. You should GOOGLE the Medtronics recall. Now, I am telling you what I would think and do, I am not a DR but I am very keen with electronics...I do not have an SCS and the problem your son is having is one of many reasons I dont. I know that when they work ....they work good. Have you ever had a TENS unit on a sore muscle? They work the same way as an SCS but they use a higher voltage, I have used one many times and the voltage transition from low to high is a very slow and consistant raise in voltage and you can feel it when it gets uncomfortable with out hitting you with a big charge all at once. Please do not consider what I wrote as a diagnosis but my own thoughts stemming from my electronics education and experiance. I read their recall on the bad leads, most of the problems came from a heart unit......not kewl! Here is the recall link for the medtronics leads http://www.medtronicheartleadrecall.com/?gclid=CNuQjrjJupMCFQoRswodGAmUCA

Hi Franknberrie,

Thanks for the info.  The erratic functioning of the SCS was both when my son adjusted the pulse himself with his remote control and when we were at the doctor's and the Medtronic rep was doing it.  However, when it did start working predictably, but they could not program it so that it made my son feel better.  Witrh the trial one, the doctor (not the Medtronic rep) was able to program it so that it reduced the pain in his legs considerably (with only one lead) which is why he went ahead and had the permanent one put in.  No one (not even the doctor) was able to reproduce the same effect with the permanent two leads.  First, they had trouble covering his legs without hurting him in his abdomen and also, when he felt the same feeling in his legs as he had done with the trial, it made his pain level increase instead of decrease.  He has now had it removed which is great bc the control device in his buttock always gave him extra pain down his left leg.  I know the these devices help some people (which is why he tried it instead of having the pump which is previous pain doctor wanted to do) but it did not work for my son.  Linda

 

Hi SylviaMarieZ,

 Can you tell me and the group what ECT stands for and exactly what it is?

 

Thanks Frank