You are very right Mark56, I should not be so disappointed. I don't blame Boston Scientific. It would be unrealistic for me to think Boston Scientific or an other manufacturer of Spinal Cord Stimulators would function in a manner different that the rest of corporate America.

I really blame myself for not listening to the warning signs and checking the scientific research to verify what I learned the hard way, that Spinal Cord Stimulators are ultimately dangerous for patients with Complex Regional Pain Syndrome. I blame myself for being taken in by support groups whose members reported successes were few and lacking in longevity.

Many people tried to warn me but I only heard what I wanted to hear due to desperation. Worse than not protecting myself, I roped other equally desperate CRPS patients into a fate ultimately similar to mine. Looking back it was all based on denial.

I guess when the pain is bad enough we all can be vulnerable to denial. I am just happy I have a second chance. From what I have learned, most CRPS patients who were made worse by Spinal Cord Stimulators don't get any better and many become worse.

I am working hard on forgiving myself. The hardest part of that process is the guilt I feel for encouraging others to go down such a dangerous path. Guilt and pain is a real bad combination. If there is anything I can do to help someone out I intend to spend the rest of my life trying.

My pain specialist is not wanting to prescribe meds for my current foot problem. He wants me to get surgery. However, the doc who told me I needed surgery and said he would do it, has not scheduled me in for it. I get the cold shoulder when I call in about where I am on his waiting list. I don't think he wants to do the joint replacement as medicare doesn't pay him enough. Now what do I do? If I can't get meds for this, nor get the surgery, just what do they expect me to do? ginnie

Kelly,

You still have time to put the brakes on the SCS trial to do some homework. There is no relationship between a successful SCS trial and a successful outcome if you have CRPS.

I put this checklist together in an earlier thread. Please consider reviewing it with the doctor who has suggested a SCS for you. Since your original post was a quest to find the truth here is a real good start.

1) What specialized training have you received regarding Spinal Cord Stimulators and Complex Regional Pain Syndrome?

2) What is the source of your training for implantation of the device being considered for me?

3) What research articles can you provide to me demonstrating the safety and long term effectiveness of Spinal Cord Stimulators for treatment of Complex Regional Pain Syndrome pain?

4) What research or written documentation generated by the manufacturer of the device being considered for me can you provide, documenting the safety and long term effectiveness of Spinal Cord Stimulator for Complex Regional Pain Syndrome?

5) What is the Spinal Cord Stimulator failure rate for Complex Regional Pain Syndrome patients for the device that would be implanted in my body?

6) What is the revision surgery rate for Complex Regional Pain Syndrome patients for the device that would be implanted in my body? What is the failure rate for those surgical revisions?

7) What are the odds that implantation of the Spinal Cord Stimulator will cause a spread of my Complex Regional Pain Syndrome or ignite neuropathic pain at the incision sites?

8) Does the manufacturer of the Spinal Cord Stimulator being considered for me recommend implantation for Complex Regional Pain Syndrome Patients? If yes may I review that documentation? If no, on what basis do you install Spinal Cord Stimulators in Patients with Complex regional Pain Syndrome?

9) May I review the physicians clinical manual produced by the manufacturer for the device that would be implanted in my body?

10) What is the average revenue generated to your practice by a standard, uncomplicated Spinal Cord implantation?

11) What percentage of your practice's revenue is generated by Spinal Cord Stimulator implantation and revision surgeries?

This process will also help you develop your self advocacy skills which, when you have a diagnosis of CRPS, are really the only thing you have to protect yourself from procedures and treatments that can make you worse.

[QUOTE=ballerina; Kelly, You still have time to put the brakes on the SCS trial to do some homework. There is no relationship between a successful SCS trial and a successful outcome if you have CRPS.]


ballerina - this is not an accurate statement. There are many of us on here with RSD/CRPS and successful trials (and permanent implants).

Yes, everyone should do their homework before having ANY major procedure done. Everyone is different, with what they have tried and what they have/have not responded to. And no, not every dr is only focused on his bottom line. I happen to have a VERY compassionate and caring dr and my SCS reps are great!! My dr is focused on me when he is treating me, and what is best for me...not him! I went in with my eyes wide open and do not regret my choice!

I think it is great that you provide information for individuals to use as they are weighing their options and doing their homework, but please be honest and realistic about it. What works for me may not work for you and what works for you may not work for everyone else.

Nanc

James.....I am sorry you are having difficult with forgiving yourself. As I see it; you did nothing wrong. What you did was because you cared about others and there was not any malice whatsoever on your part. You are telling your story. The big recommendation is for each to do his homework with "eyes wide open".

Seeing the post from Nanc would appear, in her case, the SCS worked. She also has a caring doctor and reps. Unfortunately, too many of us do not have that luxury. That is not your fault.

[QUOTE=Nanc;863329]There is no one happier than I am that your spinal cord stimulator is providing you with much needed relief. I so hope that it continues to work forever.

The odds, however are just not on your side. The truth is that there is not one shred of scientific evidence to support the use of SCS for CRPS for long term relief and physicians routinely do not share that information. This has nothing to do with "what does not work for one may work for another."

By the way, how many years have you had your Spinal Cord Stimulator to treat CRPS pain?

Hi ger!
You are so right!

I am lucky that I have the drs I have now, but it took quite a while to find them. I wouldn't have had such a bad spread if I didn't go through so many ignorant drs that misdiagnosed me.

[QUOTE=CRPSjames;863368]Thanks James. I have only had them since June 29, 2011, I have two - thoracic and cervical. Who knows, maybe I will contribute to the scientific evidence supporting that they do work for CRPS long term...we shall see. I think it does have a lot to do with "what does not work for one may work for another" because we are ALL different in how we each respond to treatments, etc. I am that one in a million person that bizarre things happen to and things don't work on. I do not respond to most treatments, but am to this and I am allergic to everything. Back in 1992, I was diagnosed with RSD in my face. The UVA Pain Clinic said I was the first case they had ever seen or heard of with it there. They successfully treated me. They wanted my dentist to submit my case to the medical journals. I had an injury in 2009 that caused it to spread.

My stimulators have allowed me to regain the use of my hands and left arm. I could not raise my arm before the scs. For this success so far, I can continue working and typing on this keyboard. After they were implanted, the spread has stopped, my color is great, my pain is reduced greatly and I am working! I do not know how long it will last, no one does, but I'd like to think that it will last a very long time!

You need to stop beating yourself up and forgive yourself. You told your story and didn't force anyone into doing anything.

now wishing you comfort
a feel of serenity
get well
heal comfortably
live and love life
blessed you are

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