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Nervous - Scheduled for my SCS Trial

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Unread 03-31-2012, 12:10 PM   #51
CRPSjames
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Originally Posted by ginnie View Post
That was my concern too with the SCS. What trials were conducted when pregnancy was involved. I have found nothing in the research to justify using it on a pg woman. I have have dug deep. ginnie

Good point Ginnie. The reason you can't find any clinical trials or research is because the the companies that manufacture spinal cord stimulators do not recommend them for women who are pregnant. It would be impossible for researchers to obtain research funds to study a use for which the manufacturers list pregnancy as a contraindication. Additionally the FDA approval of the devices was based on the contraindications submitted with the applications.
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Unread 03-31-2012, 01:12 PM   #52
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Hi James, glad you found that same conclusion. I couldn't figure out what I was doing wrong in research. I have access to a medical research facility and I came up a blank. why did Kellys' doctor tell her it was ok to do and get the SCS when she would like to have a baby? I am not sure that is very moral if he knew that it was not approved for PG woman. ginnie Hey Kelly are you there? I do care about you!!!!!!!!!!!!!!!!!!!!
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Unread 03-31-2012, 01:34 PM   #53
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I hope Kelly's doctor's suggested treatment plan is due to ignorance. There are many well-intentioned and caring pain management docs out there who just do not know any better when it comes to CRPS. It is so hard for any of us to find our way really, it has to be so much more difficult for a young person.

I care too Kelly!!!!!!!!! Everyone who has responded to you cares because we have all been where you are!
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Unread 03-31-2012, 04:34 PM   #54
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Originally Posted by CRPSjames View Post
Regarding SCS trial there is absolutely no relationship between a "Successful" trial and a successful outcome if you have CRPS. If there were there would not be so many people like me.
James, let me ask you this. What do you propose is the diagnosis of Nanc, myself and many others on this forum? If your statement above rings true, then either A) we have all been misdiagnosed, B) the outcomes of what we share is fabricated, C) you've done a world-wide research and have IN FACT found that every single CRPS with implants have failed, or D) you simply have made a false statement.

Posting inaccurate information on a forum does not fly.

Here's just one documented study that proves there ARE positive results for CRPS recipients:
http://www.anesthesia-analgesia.org/...109/2/592.full

Like I said prior, these case studies are not necessarily anything to base all truth on. These clinical trials are usually exclusive to a small demographic region and only select patients are used.
I've also seen some of the case studies in which indicate low rates of success for CRPS. It goes both ways.

All we are politely asking is that you refrain from making statements such as these. They simpy are NOT true.
Wouldn't it sound rather ridiculous if some of us were to come here insisting that ALL SCS implants for CRPS pts are sure to be successful? I'm sure that would pretty much step on alot of toes.

You've made your point of how much you are against SCS and that is fair, as you yourself had a very unfortunate outcome and you have every right to feel this way. But don't come here to a forum full of people actively using SCS's and insisting there are no successes for the very diagnosis that alot of us have been living with for years.

I am not trying to be argumentive, nor do I undermine the fact that yes there ARE alot of failed outcomes out there. There is a very diverse group of testimonies here, including the positive and negative.
You've given very good input to the original poster of this thread and your valid concern about pregnancy. At some point you are going to have to trust that she is a 30 yr old woman who might know more than you give her credit for and that this ultimately is between her and her doctor. She's heard your viewpoint and can take that into consideration at her next visit with Dr.

My only regret is that her thread has been hijacked with headbutting and disagreement. When I see a statement with false info made once and twice, possibly scaring off somebody coming here for support, I WILL speak up.

Rae
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Unread 03-31-2012, 06:40 PM   #55
CRPSjames
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Quote:
Originally Posted by Rrae View Post
James, let me ask you this. What do you propose is the diagnosis of Nanc, myself and many others on this forum? If your statement above rings true, then either A) we have all been misdiagnosed, B) the outcomes of what we share is fabricated, C) you've done a world-wide research and have IN FACT found that every single CRPS with implants have failed, or D) you simply have made a false statement.

Posting inaccurate information on a forum does not fly.

Here's just one documented study that proves there ARE positive results for CRPS recipients:
http://www.anesthesia-analgesia.org/...109/2/592.full

Like I said prior, these case studies are not necessarily anything to base all truth on. These clinical trials are usually exclusive to a small demographic region and only select patients are used.
I've also seen some of the case studies in which indicate low rates of success for CRPS. It goes both ways.

All we are politely asking is that you refrain from making statements such as these. They simpy are NOT true.
Wouldn't it sound rather ridiculous if some of us were to come here insisting that ALL SCS implants for CRPS pts are sure to be successful? I'm sure that would pretty much step on alot of toes.

You've made your point of how much you are against SCS and that is fair, as you yourself had a very unfortunate outcome and you have every right to feel this way. But don't come here to a forum full of people actively using SCS's and insisting there are no successes for the very diagnosis that alot of us have been living with for years.

I am not trying to be argumentive, nor do I undermine the fact that yes there ARE alot of failed outcomes out there. There is a very diverse group of testimonies here, including the positive and negative.
You've given very good input to the original poster of this thread and your valid concern about pregnancy. At some point you are going to have to trust that she is a 30 yr old woman who might know more than you give her credit for and that this ultimately is between her and her doctor. She's heard your viewpoint and can take that into consideration at her next visit with Dr.

My only regret is that her thread has been hijacked with headbutting and disagreement. When I see a statement with false info made once and twice, possibly scaring off somebody coming here for support, I WILL speak up.

Rae
I don't know how this thread as been hijacked. Discussions presenting the entire picture can only be helpful to anyone who is really doing their homework.

Research on SCS is indeed very interesting. Anyone conducting a review of research on SCS and CRPS should carefully look at the funding sources, as well as the connections of the researchers to the companies that manufacture SCS. Much of the research and case studies that whitewash some of the realities of SCS and CRPS is paid for by the manufacturers.

The fact that the manufacturers themselves can supply no scientific evidence that SCS are safe and effective for CRPS says even more than the opinions of the top CRPS expert in the U.S.

I so much hope and pray that your pain continues to be relieved by your stimulator for ever and wish you only the best!
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Unread 03-31-2012, 08:05 PM   #56
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Very good point CRPSjames regarding funding and spinal cord stimulation research. Might I add that care must be taken when interpreting data from articles such as the one sited by Rae. That particular study is riddled with flawed research methodology. At least with this article the authors report some of those flaws. Additionally, when it comes to such a study of CRPS and SCS there is no longevity, which is a major concern with SCS and CRPS.

Any body can PM me if unsure of the validity of research methods while reviewing journal articles. Having a doctorate makes me about as much of an expert on CRPS as the next patient but evaluating research methodology is right up my ally.
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Unread 03-31-2012, 08:14 PM   #57
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Default Hi Tina

I am not a doctor or PHD, however I have alot of research experience and continue to dig into things. It is good when both sides can present their research. I was in a trial study for ten years, and had access and still do to a medical research facility in columbia Mo. I just hope everyone gets the help they need. This condition is so bad, I don't blame everyone for getting in a tissy. Pain is terrible for so many. I wish there were more alternatives and more things coming in research to help RSD etc. Right now I am reading "The Emperor of All Malidies" very good about cancer and how the discoveries are going in that field. Thanks for your input too on the issue. I am just an outsider who has some unusual pain. I am a little worried for myself! ginnie
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Unread 04-01-2012, 04:10 AM   #58
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Heart Well Golly Gee Whiz- Where Have I Been?

So sorry folks, and I could cite my degrees and pedigree, but that really rather runs afoul of the realities we who have gained programming of our units while at the wheel bring by way of experience.

Now, please do not take my healthy dose of water liberally poured all over this menage as more than well intentioned cooling off. I submit as the first known self programmer on this place, supplemented by two other brave souls who weighed in relevant to their identical positive results once allowed to program their Boston Sci units, a trend previously unknown, and possibly undocumented out of fear of litigation [oh, there I go using that pedantic L word again] the market majors have remained afield from prosptective patient programming scenarios. A travesty truly.

Studies be shelved [a word which makes it past the censor] demonstrable positive results from self programming may present the breadthrough to sufferers the world over who now are relegated to inane games of 20 to 50 questions trying the patience of all as one attempts to respond adequately to a technician driving a tweak session. Such is not care. It is ignorance compounded upon travesty mounted heavily upon broken spirits of patients disappointed with their stim results.

I empathize wth James regarding his pain, and yet believe had he been allowed control of the programming session or sessions different results may have obtained. I am living proof, and may very well find whether current programming which held my radiculopathy at bay for two years may be tweaked by me to address the suspected CRPS I will learn Tuesday coming during the course of a full body bone scan either has or has not invaded my lower extremities. The lower legs firmly planted in vats of boiling oil sensation prevents my wearing of socks, shoes, trousers. Skirts not being an option [watch it Rae, I am not in a mood for a smile here], I resort to short pants, and my employer has even shwon me Capris are available for me as I sit at my desk practicing law, feet firmly planted on ice gel packs from my deskside freezer aid assuaging my discomfort.

Show me studies where patients of CRPS DX have been self programmed without positive result time and again, and I may be willing to listen. Underscore maybe. In the meantime, Doc has suggested if CRPS is DXed in my lower extremities, we will first head in the direction of another self programming session by which I endeavor to drive the stime as I need it where I need it. Doc backs me in this, you may ask? Absolutely! He has sponsored my authorship of an article reported on this very forum by which I endorse patient at the figurative "wheel" so as to attain breakthrough results and complete withdrawal from all opiates and nerve medicatoin for now over two years. The CRPS phenomenon has reared its ugly head off and on, but only become 24/7 these last many months, leading Doc and me to consider confirming testing followed by the reprogram session. The article I wrote should soon appear in an international spine journal due to my doc's connections and friends.

Firmly do I believe the programming sessions, followed by innumerable tweak sessions lead to crestfallen patients disillusioned by a process hoped to bring relief rather than continually unmet expectations. James is one of these who feel thus.

My Doc and I hope to demonstrate there is a better path. I intend to purchase Boston Scientific and privatixe it so as to gain full control of the board swollen with greed and analyst prognostication regarding the intuitive feel for the market performance of the STOCK. Imagine a world where the company of leading interdictive technology is rendered PATIENT SENSITIVE and PATIENT ProActive to the extent of training to encourage PATIENT hands on tweak or initial programming sessions. No one outside the flesh bag worn by a sufferer has ANY CLUE what is occurring within the patient, absolutely no one.

So, one who may feel ill at ease regarding my stand on behelf of the patient may wonder how such a dramatic moving og mountain ranges may occur. Watch the market over time. Watch what has been inspired within me, having blown the frame of reference of my patent attorney, and one will see emerging the means by which patient dignity, conscious respect for management of pain, and foundations established which promote greater comfort of all so implanted shall spring forth. The working capital is assembling. The battlefield of pain is far from lost. If we eliminate the guesswork at programming, radically beneficial results shall be demonstrated. Hold on to your hats. Rae has sounded the warning I am on fire in this. A world in pain awaits.

Drawing pain intervention to a place of greater harmony for patient benefit,
Prayin too, by the way [in case someone thought I might forget to place credit where credit is due],
One who is pursuing alternatives to opiates for all,
Mark56
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Unread 04-01-2012, 09:42 AM   #59
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Quote:
Originally Posted by Rrae View Post
James, let me ask you this. What do you propose is the diagnosis of Nanc, myself and many others on this forum? If your statement above rings true, then either A) we have all been misdiagnosed, B) the outcomes of what we share is fabricated, C) you've done a world-wide research and have IN FACT found that every single CRPS with implants have failed, or D) you simply have made a false statement.

Posting inaccurate information on a forum does not fly.

Here's just one documented study that proves there ARE positive results for CRPS recipients:
http://www.anesthesia-analgesia.org/...109/2/592.full

Like I said prior, these case studies are not necessarily anything to base all truth on. These clinical trials are usually exclusive to a small demographic region and only select patients are used.
I've also seen some of the case studies in which indicate low rates of success for CRPS. It goes both ways.

All we are politely asking is that you refrain from making statements such as these. They simpy are NOT true.
Wouldn't it sound rather ridiculous if some of us were to come here insisting that ALL SCS implants for CRPS pts are sure to be successful? I'm sure that would pretty much step on alot of toes.

You've made your point of how much you are against SCS and that is fair, as you yourself had a very unfortunate outcome and you have every right to feel this way. But don't come here to a forum full of people actively using SCS's and insisting there are no successes for the very diagnosis that alot of us have been living with for years.

I am not trying to be argumentive, nor do I undermine the fact that yes there ARE alot of failed outcomes out there. There is a very diverse group of testimonies here, including the positive and negative.
You've given very good input to the original poster of this thread and your valid concern about pregnancy. At some point you are going to have to trust that she is a 30 yr old woman who might know more than you give her credit for and that this ultimately is between her and her doctor. She's heard your viewpoint and can take that into consideration at her next visit with Dr.

My only regret is that her thread has been hijacked with headbutting and disagreement. When I see a statement with false info made once and twice, possibly scaring off somebody coming here for support, I WILL speak up.

Rae
Learning how to interpret research data when diagnosed with any chronic illness is valuable. It can be crucial to someone with CRPS who is considering implantation of a SCS. The conclusions drawn by authors of much of the research pertaining to SCS and CRPS is suspect, not only to the frequent connections to the manufacturers but also due to flawed research methodology.

Spinal cord stimulation is effective in management of complex regional pain syndrome I: fact or fiction, Kumar K, Rizvi S, Bnurs SB, Neurosurgery 2011 Sep;69(3):566-78; discussion 578-80, the article posted by Rae is a typical example.

Reference the commentary of Robert J. Coffey, M.D., a neurosurgeon in Thousand Oaks CA who was, employed by Medtronic (pp.578-79) (One must wonder if Dr. Coffey learned of the high failure rate and spreads caused by the devices while on the company’s pay roll.

In his commentary, Dr. Coffey clearly details the critically flawed research methodology. Dr. Coffey points out that the study participants were hand picked by the authors, and that the authors failed to provide criteria by which it may be established that the study participants even had the diagnosis of CRPS. Dr Coffey basically drew the conclusion that SCS for CRPS was not viable. These flaws, in addition to the poor research methodology noted by the authors themselves, as well as the relatively short period of time under review negate the conclusions drawn by the authors.

Best to all!
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Unread 04-01-2012, 12:06 PM   #60
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I think the fire in your legs and feet has lit a fire in your soul! Did you happen to see the Goodmorning America show? Had a good part devoted to Boston Scientific, and how they are not watching the devices that are on the market. Something is fishy there, and their higher ups in the company are turning a blind eye. Hope you can get a re-run of the show. Was on here at 9:a.m. this morning. It is about all devices that are being released, heart defibs to the SCS, very interesting segment. Good luck Mark in that quest, you are indeed trying to climb a mountain. ginnie
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