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Nervous - Scheduled for my SCS Trial

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Unread 03-18-2012, 11:43 AM   #11
CRPSjames
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Dear Kelly,
I am so sorry you are traveling the CRPS road. Since you don’t like things sugar coated and since one of the most risk filled procedure you can have when you have a CRPS diagnosis is a spinal cord stimulator I am sharing my truthful experience as well as links to other truthful experiences, of many like you who have had the devices implanted and been made far worse. Here is my first post on the forum from February of this year to provide you with my experience.

"I have recently joined the forum and hope to help others through my successes and failures with treatment for CRPS. I was diagnosed with CRPS in 2006 after run of the mill knee surgery, which began my CRPS trouble. After trying the usual treatments (blocks) and the more unusual treatments (HBOT) and the typical array of meds, my condition only worsened. My pain management doctor suggested a Boston Scientific Spinal Cord Stimulator. I was nervous but desperate for pain relief. I spent hours on the internet reading first hand descriptions of success stories. My trial was successful and although recovery from the actual implantation was grueling I was excited to get my life back. I had a good experience with the Boston Scientific rep, starting with my request to do my own programming, which hastened tweaking my stimulation. (I now know that self-programming has no relation to positive outcomes for SCS and CRPS patients. A patient receiving a spinal cord stimulator behind CRPS and self-programming is like a passenger being permitted to steer the Titanic behind the encounter with the iceberg.)

I was so sold on my experience that I became an outspoken advocate for SCS for other CRPS patients. Unfortunately, after about 20 months the stimulator just stopped working. A revision surgery caused a spread to my other leg and another revision resulted in a spread to my wrist shortly thereafter. When the doctor suggested implantation of another stimulator to address the wrist pain and try to get me out of the wheelchair that the failed SCS left me in I decided I’d had enough and it was time to do some real research.

I had the good fortune of being evaluated by a knowledgeable neurologist who I wish I had found prior to the SCS implantation. He explained what my own research had already uncovered.

Spinal Cord Stimulators (even the competitors of Boston Scientific like St. Jude) have long-term success with types of pain like Failed Back Syndrome. Relief for CRPS is at best limited to months or a few years. SCS for CRPS eventually increases and aggravates vasoconstriction and inflammation and further disrupts brain plasticity (the culprits of CRPS.) The eventual result of my spinal cord stimulator was rashes, sores, swelling and my alodynia was much worse than prior to implantation. Additionally, each revision surgery began a new area of CRPS pain as well as initiated the spread to my other leg and wrist. The neurologist explained this action to me in this way: The stimulator stimulated the pain fibers in my spinal canal, which spread the CRPS to other areas, like a freeway efficiently facilitates transporting vehicles to distant locations.

I told the neurologist that my pain management doctor said the spread had nothing to do with the SCS and that “CRPS spreads” and to prove his point he suggested I “ask the rep or call the company.” My neurologist found this laughable and stated, “Conversations like this demonstrate ignorance, greed or both.” Regarding the rep, I couldn’t have asked him questions if I wanted to because as soon as he found out I refused additional business for him he ignored me-yes totally acted like I was a stranger in the waiting room. When I approached him and asked to speak with him he claimed he was “busy” and would call me. Never happened.

My biggest regret is not that I failed to do my own research prior to implantation, or that I did not listen to my gut with the revisions, or even that I ignored the many warnings of other CRPS patients who had similar failures, or that I didn’t notice that the “success stories” were from people who had their stimulators for relatively short periods of time-months to a few years. My biggest regret is that I assertively encouraged other similarly desperate and naïve people with CRPS to have spinal cord stimulators implanted. Three of these people that I know of have had failures after initial good results, which, like me left them in much worse condition.

Since I can’t undo the damage I have caused others the only thing I can do is to share my experience and encourage others with CRPS to “just say no” to spinal cord stimulators, no matter how desperate you are for pain relief.

I was working when I was implanted. Now I am working my way out of a wheel chair and fighting spread, dystonia, skin infections, rashes, and alodynia that is far worse than prior to implantation.

My condition is now rapidly improving through the use of tDCS, which I learned about from this forum. How I wish I had tried this treatment prior to being debilitated by the spinal cord stimulator.

If you are considering a SCS the last place you should go to ask about risks is your pain management doctor (who stands to loose upwards of $40,000 if you decline, even more with revision surgeries), the company rep and testimonials of patients less than three years out from implantation.

I wonder where I would be today if the fork in the path had led me to tDCS rather than to a spinal cord stimulator?

It is better if I don’t really think about that too much but I hope others who still have a chance to protect themselves will."

Kelly, for additional information please carefully review the following links. You will find an excellent checklist to take to the physician who will be implanting the device. How I wish I had this tool and used it prior to being implanted with the device. There is also a list of CRPS patients who have had spinal cord stimulator failures, revision surgeries, spreads of CRPS and/ or explants of the device. After reviewing this information I suggest reading the tDCS thread on the RSD/CRPS forum. Think about why your physician has not suggested tDCS prior to a considering a spinal cord stimulator.

Please put the brakes on this procedure until you have done your homework. My only homework consisted of listening to the doctor who stood to make a hearty profit on the procedure, the company rep (need I say more) and the comments of a few on line people with CRPS who had the stimulators for relatively short periods of time. (less than three years) If I had looked more carefully at that group I would have seen that it was more of a “leap and pray” approach than anything rooted in reality. Prayer is great but if that is all you have to throw at the procedure you are asking for an experience like mine. Please feel free to send me a pm if I can provide you with more support.

st. jude stimulator.webloc


spinal cord stimulator f#399B3D


P.S. Please see Hooshmand's website for information on CRPS and Pregnancy. I am very concerned about any physician who would suggest a Spinal Cord Stimulator as a path toward pregnancy.
I received a pm that the links are not good. Try these:


http://neurotalk.psychcentral.com/thread161951.html

http://neurotalk.psychcentral.com/thread163281.html
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Unread 03-18-2012, 01:09 PM   #12
ginnie
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I will pray for you that all goes well with what you have to do with the SCS. We are here to listen and help you while you go through this trauma. Many people will jump in too, and try to comfort you. I know what is is like to be afraid when you face surgery. I will not forget about you. ginnie
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Unread 03-18-2012, 01:12 PM   #13
ginnie
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Default James and the p.s.

I know just enough to know that James was right about the SCS and its implication concerning pregnancy. I hope you research this before you choose any protocal that was given as an option to you. ginnie
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Unread 03-21-2012, 01:29 AM   #14
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Angry James

Oh how I HATE the behaviour which demonstrates the GREED which motivates Boards of Directors and Reps alike to Sell, Sell, Sell......

PRECISELY WHY BOSTON SCIENTIFIC becomes by takeover target of choice. I will find the means. I will remove the company from the market of Wall Street and its neverending analyst calls to pump more "buy our stock" data into the market, trumpeting the reasons why the company is a good investment. NOT. I want this company purged of its reasons for analyst calls. Purged of the taste for profits without honest care for patient need, and turn it to the good she can do. This is my goal for Boston Scientific. Retrain reps to provide caring support, not bonus producing turns away from a man with an honest quest for care!!!

THIS is precisely why we look to politicians to cure all of our ills!! Because companies lose their way in the effort to squeeze more value for the shareholder/investor. I have known greatness can be achieved in a privatized closely held company. I have lived it only to see greed ultimatly turn the head of the Chairman. greed.......greed.

Look what became of WalMart, the company which was always Buy American when its founder lay dead and the next generation took the reins. Goodness one of my own cousins is married to a lofty General of the skies for WalMart, living in their quaint little SrVP neighborhood with all of the same officers, flying the company jets to and fro managing their districts as the company has forgotten its origins, its mantra, its employees, who have told me they don't get care because the schedules are run carefully to avoid the rise of the little person. Ever ask a greeter at such a store, "how much are you paid?" The answer might topple you.

This sadness is why I hope to privatize at least one of the market product manufacturers and bring it to bear upon the needs of the patient. Not beating my breast here like some quadraped in an African jungle, just thinking out loud regarding what may be if capital finds me in the position of purchase inventions may provide.

James, your result is pitifully pathetic, as is the result of anyone else "sold down the river" for the sake of profit. Where is the business ethic in such conduct. Why are company's talents so perverted? The present wealthy reach out in caution with just enough to look pretty. My goal is to take wealth amassed and bring help to people wholly absent government involvement because the government meddles too much in the quest to perpetuate a supply of votes to continue careerists goals.

We need wealth to share through a Foundation for the sake of care to thsoe who cannot afford for whatever reason. We need a manufacturer which does NOT answer to Wall Street, for Wall Street is populated by financial vultures grown fat on the flesh of middle America. I want to bring some betterment while my time on this planet continues.

The Jameses of the World are a travesty. You should not be so disappointed. You should be served if it is at all possible.

Striving,
Praying,
Inventing,
Mark56

Last edited by Mark56; 03-21-2012 at 08:49 AM. Reason: typo
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Unread 03-21-2012, 08:43 AM   #15
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Move the mountain Mark. Greed has taken over the morals of this country in so very many ways. I pray God works through you, to allow you to move the mountains of pain. ginnie PS, I am glad I was denied the use of the SCS,
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Unread 03-21-2012, 09:01 AM   #16
Kelly0514
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Thank you for all of the feedback both pros and cons regarding the SCS trial. I am extremley greatful for the articles that were provided and I look forward to reading them over the next few days. I agree that it is imperative to do your homework before going through a major procedure. I am also most curious about the impact the SCS will have on pregnancy. Again, thank you. It's calming to now there are other people out there to listen and provide guidance.

Thanks again.....
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Unread 03-21-2012, 11:38 AM   #17
hurting
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CRPSjames Great post.

I over a 2 year span went to 6 PM Dr.s who all on my first visit told me that I need a SCS to fix my pain. What was bad was that they are all saying the SCS will cure my CRPS pain not help only a certain amount like 50%. Funny thing when I ask each dr. for references not one would come up with any nun, nuder, nill. But all these dr.s could get me in for the trail within days.

I can't even take getting blocks without it spreading to where they did the injections, neck, upper back, lower back, and arm pit. I know these SCS work for folks that have failed back surgeries where the the pain stays in that area but it was never intended to be used on people with CRPS/RSD where you stub a toe and the pain has moved in forever or getting a injection in your hip and they hit a nerve or bone only to cause pain that will never go away. I have read on here and other sites where they implanted the SCS with several leads to work on the R. foot, L. upper leg, L. wrist, and R neck. A few months go by and the only body parts that the SCS is working on is a little toe that was never meant to be covered but all the areas that it should be working on nothing. The reps & pm drs. are trying to cover too many areas all at once with the SCS.

Thanks james for the truth about the SCS and I hope a lot more folks with crps/rds will reconsider having one implanted that needs coverage in several areas all at the same time.
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Unread 03-22-2012, 04:58 PM   #18
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Mark......Suzanne8 posted yesterday on the SCS Needs to Come Out thread. The poor girl never should have had her SCS installed. The doctor did not see her as a person; but only $$$$$. GREED.....So SAD !!!!!
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Unread 03-22-2012, 05:11 PM   #19
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Move the mountain Mark. Greed has taken over the morals of this country in so very many ways. I pray God works through you, to allow you to move the mountains of pain. ginnie PS, I am glad I was denied the use of the SCS,
I am glad my SCS trial was unsuccessful. My Pain Specialist continues to ask me to do another trial. I continue to decline. He has mentioned that I am fortunate that he is not like some doctors, who if ther patient does not do what is recommended, they will not continue to prescribe pain medication to their patients. I can't help but wonder if the $$$$ are not the reason he keeps asking. I do like him; but this does concern me.

Before he said this, it had never dawned on me that he might withhold my med prescriptions. My husband feels he did not mean it that way; but I had never before thought this could happen until he mentiond this to me. Like...why did he even bring this up??? Being on 60mg's Oxycontin every 6 hrs. for 240mg's daily and 7.5mg's percocet for breakthru; the thought of being refused my prescriptions, is frightening.

(Ger)
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Unread 03-22-2012, 07:25 PM   #20
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exactly
then what
who where when how
it is frightening

chin up together
please feel good
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someone who cares
eva
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