Quote:
Originally Posted by Mark56
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  |
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.