Originally Posted by Rrae
I've been following this thread and just have to say -
It's wonderful that people come here to share their testimonies regarding their implants, that's what the forum is all about. But to make claims that ALL people with CRPS will have failed outcomes is crossing a line. Like Nanc said, there are quite a few people here with CRPS, including me, and we don't appreciate you speaking on our behalf. Just because some of us haven't had their units for over 5 years doesn't automatically put us in the catagory of 'failed implants waiting to happen'.
Please know that I have complete empathy for those who have had bad experiences with their units and crps spreading. Indeed, people need to know that this exists, and I appreciate your passion in what you are saying. However, you have no right to make claims stating that every single CRPS patient is setting themselves up for disaster by trying this method of pain management. Most of us here DO suffer from RSD and we can all agree it's a terrible condition to have to live with. Keep in mind, there are many varying degrees of CRPS and each person is unique to his/her diagnosis.
As we all know SCS is usually the last option after other modalities have been tried. 3 years ago when I was presented with this option, I had become hopeless and desperate and wishing my life could just end. At that time if someone were to tell me that I'd get 3 yrs of 70% pain relief from this nightmare, I would have thought I'd died and gone to heaven. If my unit were to quit working tomorrow, I would still be ever grateful for these past 3 yrs which got me out from under the grasp of suicide ideation.
I am not an SCS advocate, nor am I trying to sell these very high $$ units to anyone who comes along. I am sharing my testimony and mine alone, which is what people come here looking for. I agree wholeheartedly that there is a greed factor involved with the sale of many of these units and I think it's downright disgraceful when a Dr pushes someone to get this with the threat of discontinuing their pain medications. Yes, I've seen alot of 'wrong' in the approach some Dr's use. On the other hand, there are many doctors who present this option with pure and good intentions of possibly getting their patients to have a chance at effective pain management.
I know you've done alot of research on this.....but so have we. All I'm asking is please don't undermine our experiences. There actually ARE people out there who have had their units for several years. There are recipients who've come here sharing their success with their unit of 8yrs. One of the nurses who helped with my surgery has had hers for SEVENTEEN years and loves it to this day. The doc who did my implant has an impressive list of successful CRPS
cases. So they ARE out there.
This isn't to say that there are absolutely NO problems with 'success' stories. SCS is a very high maintenence unit. Most of us have had revisions or lead migration, but it does not mean it was unsuccessful. I would gladly go back for revisions whenever necessary to be able to continue getting the coverage I need.
Your testimony is very valuable, but please, keep it to YOUR testimony. Feel free to post references also but keep in mind, alot of the stats we access are studies of clinical trials. Hooshmand's website is case in point. I personally was never in a clinical trial, nor was I a patient of Hooshmand, although I agree his website is impressive. Please respect the fact that there ARE positive outcomes and don't speak for the rest of us.
Please forgive me Rae for upsetting you. That was certainly not my intention. I am certainly not speaking on your behalf.
You and I however, are not so different. I, like you, was hopeless and desperate and not wanting to continue living when I made my decision to be implanted with a spinal cord stimulator. I just knew it couldn't get any worse. Sadly it did and eventually I became addicted to the narcotics that were needed to survive the unlivable pain and spread caused by the stimulator and I was wheelchair bound.
I too shared a close and trusting relationship with my rep and doctor. My request to self program the stimulator was readily honored and I had total trust in my doctor. The rep even sent me a birthday card. After the failure and my refusal for another stim the bottom fell out and the true relationships became apparent.
I most assuredly hope that your stim is long lived as I did not intend to cause you any anxiety.
You said that we all know that SCS is a last option. That is entirely incorrect as illustrated by the young woman who hopes to have a pregnancy with the help of a SCS. From her post it is apparent that she has not had CRPS long enough to exhaust all other options. Given the fact that a SCS was recommended so soon in her treatment and at such a young age might even suggest that her physician is not even aware of other treatments that might improve her condition and have a more favorable long term outcome.
On my recent long awaited appointment with Dr. Schwartzman, the top CRPS person in the country, I was struck by the kindness of the intake nurse. I was asked about emotional issues I was having and spoke of the guilt I felt for encouraging others to have Spinal cord stimulator implants and then watching them fail like mine did, one by one. She immediately told me that he does not recommend SCS for CRPS patients for reasons exactly like what happened to me and shared with me one of his favorite quotes to ease my guilt. It is by Maya Angelou.
"I did then what I knew how to do. Now that I know better, I do better."
Now that I indeed know better if I can save just one person from what happened to me it is worth it.