hi ,

i am ericka. i have had a stimulator for 6 months now. it really does not help me.if i have it on high enough to relieve some pain my leg does not respond welland i can't feel when i have to go to the bathroom. the battery site is very painful and i can't lay down. also since my surgery my back has been a hunderd times worse. so i would not recomend it.i am now on lyrica it is working ok still have the pain but the rest of me does not feel so tired and broken. the have the special k in a topical form you might try that first.good luck with everything.

         

                                            be well ericka

  Hi Ericka,  I'm sorry you're having so many problems with your SCS. I'm actually on my 3rd. The first 2, after the first 3 months, the leads moved and the SCS didn't work anymore and every time I turned it one, it hurt like nobody's business all over my back.  After 6 months, the area where your battery is, is going to be sore because it's right under your skin. It's been a year since my surgery and my area is still sensitive sometimes. As for your back, you shouldn't be having all that pain, in my opinion (but then I'm an RSD patient that has to repeat my whole RSD 7 1/2 year history to new dr's at every appt I have every month to the VA  - what fun!!!). Has something happened since your surgery to increase your back pain? For example - my dumb luck - I've been rear ended twice since my surgery last year - so that has caused major muscle spasms in my back in addition to what the surgery caused. I really think you need to let your dr know you're having these problems, they really don't sound right to me - and again I've had 3. They had to remove the first 2 after 3 months ! I hoped I helped some. My email is [email protected] or [email protected] if you have any questions or if you just want to vent/chat.

{{{{{{{{{{{{{ LADY }}}}}} OOo wowow that is super that you got the relief that you needed. That is really awesome. Wishing that drs could do n find the answers more often than they do..  Let us know how you are doing.. keep us informed please

Hello! My name is Lisa and I have had a spinal cord stimulator. It worked for me for awhile and then just stopped working! I am also curious about the ketamine infusions. Could somebody please tell me if anyone has had this done in the United states. I am getting desperate. pain is getting worse and worse each day!

                             Thanks,

                                  Lisa

HI Lisa,

 

I also have a stimulator in that worked so great for awhile, but now is not helping. The only place I could find where they are using ketamine frequently is Drexel University through Dr. Schwartzman in Philadelphia.They do a 5 day inpatient therapy or a 10 day out patient treatment.He also screens people for the coma treatment in Germany. If you go to the website www.RSDS.org you can pull up an article published in Neurology Today in Feb 2006 that discusses the coma treatment and the awake therapy called "Two Approaches to Ketamine Move Forward For Complex Regional Pain", also this quarters news letter from RSDS.org has a detailed description of the awake infusion of ketamine both the 5 day in patient and the 10 day out patient by Dr. Getson called "Overview of Ketamine Infusion Therapy". You should be able to access that article on the website too.One really big problem is insurance.  It's an expensive treatment and very few patients have been able to obtain approval for the treatment in addition to the issue that ketamine has not been approved by the FDA to be used for CRPS.

 

 Schwartzman has obtained approval for a trial/study of ketamine here in the US from the FDA (article in the New York Times )but is waiting for Drexel University to do all that they need to do to set up the study.  I have consulted multiple doctors on my own and through friends in the medical field all over the country and every single one has said to wait to try the ketamine until after the study. 20% of those that try ketamine get absolutely no result from it and  it can be a very dangerous treatment when given to a person by someone not experienced in it's use. With all  that said, I do have an appointment in Jan of 2008 with Schwartzman to be evaluated, but I live in California. 2 weeks ago his office staff told me his is currently training someone to help with the ketamine infusion therapy because so many people are requesting it and that person would be available this month, so that may help people get access.

 

My doctor feels it is best to wait to see if Dr. Schwartzman's results can be duplicated when he does the trial before he would recommend going to Philly and possibley considering trying to find a way to pay out of pocket for the treatment.(just traveling there seems overwhelming to me physicaly) Once the trial is done and if the results are favorable, then insurance will be more likely to pay and maybe more physcians will get involved and offer the treatment in more locations....

 

Hope this info helps and sorry you feel so awful...I sure understand.Take care!

Terry

Hi Meri,

I received a spinal cord stimulator for CRSP in my left arm about seven months ago. It's very helpful with the nerve pain, but I also have muscle and joint pain that the stimulator doesn't address.  It should be up to you if you proceed with a permeant implant after the trial.  You shouldn't expect a silver bullet, but if you can get through the day easier (and maybe reduce the meds) then it might be worth it.  My battery pack is in my belly, under the skin, over the muscle.  It only hurts if something hits or bumps it. It does stick out a little (I call it my "ab of steel").  I hope this was helpful.