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.

Respectively,
Rae

Originally Posted by Kelly0514

Hello Rae,

Thank you so much for your comments, I agree with you 100%. I am very grateful for all of the feedback I have received on this message board, but what I am looking for is constructive feedback. i feel with every procedure and option out there, patients will have good / bad experiences and I am open to hearing about all of them but I don't think it's fair to undermine the individuals that have had successful outcomes with the SCS and for those of us who have doctors that do genuinely care about our treatment and future. I'm sorry for those who have been treated poorly by docs who are only out for their commission and I hope that you have had the strength to walk away and the courage to find someone new that puts your well being first. But please don't turn my questions into a political arena bashing healthcare; while I disagree with A LOT of decisions and laws coming out of Washington, I also recognize that without my healthcare coverage, this procedure or even any of the care thus far, would be possible. I hope I don't offend anyone by this post, I just hope that we can stay focused on what's important and that is supporting one another as we are all in this same boat and share our experiences constructively in hopes that someone can learn from them.

I hope everyone is having a pain-free day!

Originally Posted by Kelly0514

I apologize for my ignorance but who is Dr. S? where is located? Any idea where or how I can find other CRPS specialists?