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.

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

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

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

Thanks Mark for emphasizing with me. We have been to the same places pain wise, that's for sure man.

By the way, you have in the past sited your "degrees and pedigrees" and I for one appreciate it. Particularly with the legal expertise you have freely offered. Well done and keep it coming!!!!!

I can't speak for other conditions but self programming has no impact on spread of CRPS, revision surgeries, progression of the disease and failure rates of stims, which are all major issues with implantation when you have CRPS. I view a Spinal Cord Stimulator being given to a CRPS patient much like a passenger on the Titanic being given the helm.

The three other self stim patients in the practice that I referred to I mentored, as part of a group of patients, at the request of the doctor. This was before mine failed and caused debilitating side effects. The three patients, like me, programmed their own stims. One by one I watched them fail over time with similar outcomes to mine.

Be very careful in suggesting that self-programming could have a different outcome for patients with CRPS. Being able to steer the Titanic will not keep it from sinking.

You mentioned watching the market. I myself have been doing that given my interest in the spinal cord industry. Consider the fact that last year's 10-Q's filed by Medtronic note that the market for stimulators is declining and Medtronic, like other stim manufacturers, is expanding and exploring other products instead.

Additionally, pending federal regulations will require that the medical device manufacturers (as well as the pharmaceutical companies) submit detailed records of all items no matter the cost, provided to any physician in the country, even the delivery of Dunkin donuts and coffee.

What this means is that all of the incentives that motivated my physician to install SCS in CRPS patients, despite the fact that the manufacturers cannot supply any scientific data that stims are safe and effective for CRPS patients, will come to an end. The freebie golf passes, fancy staff luncheons for the office staff, mega fruit baskets, as well as armloads of pizza delivered to my physician's employees will be a thing of the past.

This veil will be lifted because of a nifty little on-line database maintained by the federal government that we all may freely access. After all, wouldn't it be more comforting to all of us if sales reps visited our physician's offices with armloads of scientific data regarding spinal cord stimulators and CRPS rather than armloads of pizza?

An in depth review of the future of the SCS industry might be helpful before you sink your very hard earned dollars into it.

Prayer is a very big part of my life. I share them with all.

P.S. You mentioned in a prior post that you suspected a spread of your CRPS. Sure hope the pain is due to anything other than a CRPS spread. If it is ice is not a good thing.

Did anyone at all see the sunday morning Good Morning America show? It had a long segment on implant devices. All about Boston Scientific. This show is worth watching, no matter which side of the issue you are on. I imagin you could write for transcripts on this segment. I wish I had known about it ahead of time so all of the device users could watch it. Even the implant device I have was mentioned in this segment. ginnie

Ginnie- I will definitely seek the program among the archives, because ths show is good about sharing them in full.

James- Many thanks, my friend, for sharing of your experience. Doc suspects several possibilities for my burning pain of the legs below the knees, and yes the stim does reach below as I programmed it; however, this particular symptom of whatever trouble I face is not affected. Doc has suggested I again go through programming to determine whether it may help.

Doc knows, and his credentials are many including fellowship trained, of my use of gel pac ice to make it through the day at my office for now. He did not urge me to stop, and it seems to help a bit. I appreciate your admonition, and I take it seriously, definitely keeping it abreast of Doc's thoughts as another test tomorrow, full body bone scan with some sort of goop injected to determine yes or no whether I have now a new issue, CRPS. The five hour test will be definite in its answer according to Doc. We have already ruled out DVTs and through a blood panel larger than I have seen is underway. I have no report on it yet.

The following test will be a full body EMG to focus on all extremities but my left arm, which is good for now. Hurts like heck to type or use my right at all, and its strength has horribly waned once more, surgery on the right arm again...... maybe... I hate surgery by now. Also said test will give indication whether the lower extremities are PN instead of CRPS affected, one after another, test after test.

Gotta get ready for and head to work,
Oh how I love working where God led me to aid a small company in its growth,
What fun,
Later gators,
Agape,
Mark56

P.S. i forgot to mention the forthcoming big shots of B-12 in the backside. Yea. Another thought of Doc.

I apologize for starting this contriversial posting. All I was simply asking for was input from people who have a similiar condition as mine or have gone through the SCS Trial or Perm. Implant. I didn't ask for political views, accussations againist my doctor (who noen of you have met), or to be put down that I have not educated myself by researching all of the risks before agreeing to have the procedure done. I have been researching RSD and treatment options for almost 3 years. I have seen multiple doctors and have tried multiple procedures, all of which have left me in the same situation I am in now. In pain, limited, and on a boatload of medications.

Again, all I was asking for was information about your experiences. I don't know how this turned into such a different direction.

For all of you who have repeatedly said that SCS is a terrible idea (even the trial) and I should be looking at other options.... WELL, what are the options? Speak up. If I'm making such a poor descision, then provide an alternative. Provide a different solution. Cause all I'm hearing is, posts putting me down and putting words in my mouth. If you know so much more than me, then provide a better solution.

I'm scheduled for my trial tomorrow, a decision that took me months to come to terms with, and now I'm 2nd guessing myself. I have participated in many healthboards since getting RSD and this is by far the most disappointing one I have ever been on. I thought the intention was to support others and share experiences. Not shove YOUR thoughts and opinions down others throats.

To those of you who have been very helpful with your feedback, I apologize for this message. I'm just beyond frusturated that I let un-constructive people get in my head and allow me to 2nd guess myself the day before.

The show was on Sunday at 9a.m. Eastern time here. Mostly it was about heart devices, but it talk about all devices that boston scientific puts out.

wish to heaven that you didn't have so much pain. I am sorry you have to go through that awful test. You have already suffered enough. I will keep you in my prayers for sure. when do you go for it? I hate the thought of you being a pin cushion. ginnie