Nervous - Scheduled for my SCS Trial

Rrae · 04-01-2012, 12:37 PM

Ballerina, I'm not going to sit here splitting hairs over case studies. That is a waste of time. You and I both know these things go both ways and case studies are simply that - STUDIES. The REAL proof is in the pudding. Neither one of you have answered my question regarding how do you explain to a forum full of SCSers who have CRPS and several are getting good pain relief from these units. Do you not see that these exist? Flip side, yes there are those who have NOT had good experiences.

I'm not sure what 'doctorate' you are referring to, but most every single one of us has done extensive research and by some of the comments you have been making (such as 'there is no such thing as a successful trial and implant of these devices in CRPS pts') implies that you believe you are the top expert in what you are saying.

Why are you trying so hard to prove us wrong? All we are repeatedly asking is that you show some respect for those of us who battle this horrid condition and happen to be getting decent pain contol via the SCS.

ginnie · 04-01-2012, 12:44 PM

Nobody should be trying to prove anything with what articles are read. We just need to support each other, in what ever direction people decide to go in. This horrible condition is pain to the max, I am for any treatment that has a hope of working. Each person is unique, and should have a right to that hopeful part in treatment. What I think is when in the back of my mind I hear, "It could be me" What would I do? I would try most anything I think to get out of the pain and at a least give some of these devices a chance. I wouldn't want my hope taken away from me. since I do have some new and unexpained pain, It does make me think about the individual. I care about all of you, and hope each person gets help with their pain. ginnie

Chemar · 04-01-2012, 01:12 PM

Hi everyone
I am going to just step in here and emphasize again that what makes our Community work is that we have members representing many different viewpoints on treatments and protocols, and they are all welcome to share their knowledge or experience here.
We are a patient support community, which means simply that no "experts" rule here

It does a disservice to others when anyone suggests that there is only *one* effective treatment, as experience shows that is simply not factual. What works for one, or some, does not necessarily do so for others. It would be wrong to not have open discourse and then let people decide for themselves what route they want to take. It is also upsetting to people for whom a treatment *is* working to be told that it is not.
So please be respectful of the choices others have made, and allow them to freely share their experiences with others.

thanks

Mark56 · 04-01-2012, 08:11 PM

Dear Chemar-

Thank you for bringing Phyllis Diller back to our minds as we contemplate every possible means toward restorative actions to life. Each of us in our own ways look for hope as the means to remind us of smiles, of blessings, of opportunity to know life again....... and in case anyone was looking on Valentine's Day at a particular dance floor, I held my dear lady nearby as she strove to help me waltz. It seems my feet will no longer cooperate for that step we used to so enjoy, BUT, we did manage to Foxtrot slowly and I did not evidently flatten her feet beneath mine.

Many viewpoints? Absolutely. Many doctors with differing perspectives? Thus the genesis of second opinions. Last time I checked, only God had the supreme perspective. I am willing to do just the best I can do, and respect the perspectives of others. The world is much more fun that way.

BIG HUGZ,
Mark56

Quote:

Originally Posted by Chemar

Hi everyone
I am going to just step in here and emphasize again that what makes our Community work is that we have members representing many different viewpoints on treatments and protocols, and they are all welcome to share their knowledge or experience here.
We are a patient support community, which means simply that no "experts" rule here

It does a disservice to others when anyone suggests that there is only *one* effective treatment, as experience shows that is simply not factual. What works for one, or some, does not necessarily do so for others. It would be wrong to not have open discourse and then let people decide for themselves what route they want to take. It is also upsetting to people for whom a treatment *is* working to be told that it is not.
So please be respectful of the choices others have made, and allow them to freely share their experiences with others.

thanks

ballerina · 04-01-2012, 09:12 PM

Quote:

Originally Posted by Rrae

Ballerina, I'm not going to sit here splitting hairs over case studies. That is a waste of time. You and I both know these things go both ways and case studies are simply that - STUDIES. The REAL proof is in the pudding. Neither one of you have answered my question regarding how do you explain to a forum full of SCSers who have CRPS and several are getting good pain relief from these units. Do you not see that these exist? Flip side, yes there are those who have NOT had good experiences.

I'm not sure what 'doctorate' you are referring to, but most every single one of us has done extensive research and by some of the comments you have been making (such as 'there is no such thing as a successful trial and implant of these devices in CRPS pts') implies that you believe you are the top expert in what you are saying.

Why are you trying so hard to prove us wrong? All we are repeatedly asking is that you show some respect for those of us who battle this horrid condition and happen to be getting decent pain contol via the SCS.

Hi Rae,

Nowhere did I claim to be an expert on CRPS or SCS. I do, however, have expertise in the evaluation of research methodology.

You sited a study supporting a particular position. Some may find it very helpful to know how to spot and evaluate studies that use good or bad research methods, which have a direct bearing on the validity of the conclusion drawn by the authors.

Regarding your quote of my comment please forgive me but I do not recall saying what you quoted. Could you help me out by letting me know when I posted that comment?

I am not trying to prove you wrong, rather I present the other side.

At one point a doctor was trying to convince me that the best long-term solution for me was a SCS. I believe I posted about this last fall. Since my appointment with Dr. Schwartzman was not until summer of 2012 I did not want to undergo a treatment, prior to seeing him for an evaluation, that I might later regret. I contacted his office and inquired if there would be anything that would be contraindicated in my having a SCS implanted. I was cautioned against it for the following reasons:

1) Risk of new source of neuropathic pain at the incision sites.
2) Risk from surgical revisions, which are common.
3) High failure rate necessitating removal thus posing more risks of CRPS spread.
3) Risk of full body spread.

This information was echoed by Hooshmand’ who cautions that in 70% of cases relief for CRPS patients is short lived.

I do not seek to scare or disrespect anyone. I only seek to share information that may aid in decision-making when considering this procedure, information that is not routinely made available to patients.

I am truly sorry if anyone believes I am showing disrespect by sharing the opinions of some of the top CRPS physicians.

I fervently hope that everyone finding relief from pain no matter the treatment finds long lasting relief.

Take care and here is hoping better days are ahead for all of us!

Nanc · 04-02-2012, 07:56 AM

Quote:

Originally Posted by 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 - here is the quote Rae is referring to. I commented on this after you posted it. You and James posted this same comment. I, as did Rae, commented to you both that it is a FALSE statement.

And your other quote, as copied from another one of your posts here: "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." It looks to me that you are claiming to be an expert period.

All we have asked is that you guys stop making these types of statements and you guys continue. You guys are oblivious to what others are stating, you discount everything we say and it is unfair to those seeking support and insight.

Yes, both sides need to be presented, but do it in a fair way. Share your experiences, but not these so called facts that try to prove us SCSers wrong. We are living examples that it is working effectively. I think that my having RSD/CRPS for 20 years gives me the right to post my experiences about it as the next person. I am passionate about my experiences too, but I do not cram them down peoples throats as the only way to survive this!

Nanc

CRPSjames · 04-02-2012, 08:37 AM

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.

ginnie · 04-02-2012, 08:45 AM

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

Mark56 · 04-02-2012, 09:44 AM

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.

Kelly0514 · 04-02-2012, 10:09 AM

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.

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