Hi,

I might add some comments to this discussion. Over a year ago while researching treatments for my daughter I came across this survey done
on a support site for RSD. Many questions were asked of RSD suffers,
concerning treatments, what did and did not work for them. Amoung the
questions asked was if any one tried the SCS and did it work for them.
Just today I tried to find that same survey and I will keep working to find
the results and post links if I am able to post links.

If memroy serves me many of the survey respondents said the unit helped for
about a year. However I am also assuming since those SCS were implanted
years before the survey was made that some of those units used were not
as advanced as some are today. I don't know.

I just noted on this same site an article by H. Hooshman, MD and Eric M. Phillips, neurogical assoiciates pain management Center. They say this.
"The following is a summary of our experience with treating complex regional
pain syndrome ( CRPS) patients who have undergone spinial cord stimulator
treatment for one year or longer." The success or failure of the treatment
with SCS depends on how early in the course of the illiness the SCS treatment started, and depends on the nature of the orginial nociceptive pain."

The article continues and can be accessed through RSDHope if I am permitted to provide that link.

As they say everyone is different so what may help one may not help another. Nevertheless traditional treatment usually lists a series of treatment each being more invasive than before so extreme caution must
be excercised

Food for thought

Joydee

Hi Joydee,

The article you referenced by Hooshmand does not recommend SCS for the treatment of CRPS.

Regarding the benefits of SCS for CRPS

“Usually the beneficial effect of SCS in management of CRPS is brief (a few weeks to a few months in more than 70% of patients)."


Regarding Complications

“The SCS can lead to a spread of pain from the original site to other parts of the body. The sesitization of the spinal cord by the SCS causes spinal cord sensitization in the form of myoclonic akinetic seizures.”

The most disturbing complication of SCS follows

“SCS can also cause disturbance of plasticity and causes rapid acceleration and deteriorations of CRPS to later stages of the disease. Another complication of SCS treatment is the fact that it stimulates the sensory neuropathic pain fibers in the spinal canal facilitating the spread of the disease."

Regarding SCS failing to halt the progression of CRPS

“Clinically, SCS may relieve the pain with the first few weeks or months of implantation. With the passage of time, the pain and associated vasomotor response recur."

I agree with Rae. In addition to myself, I am sure there are others who do not appreciate being on your list. A revision could be necessary for any reason, not just for equipment failure. My revision was not due to equipment failure, leads migrate - that can be because of human anatomy. RSD spread could be caused from a number of reasons. I have had spread, from injuries and a shoulder surgery.

Everyone comes here for input and support and appreciates what all have to offer. I think that when you post information, it should be current and not outdated. The FDA letter is old, companies make improvements and upgrades when there are problems. St Jude has. My rep told me about the battery problem and that it was fixed. You shouldn't scare people with old info. You also shouldn't tell people that they should find a new doctor if their doctor doesn't recommend the same treatment that you feel is the correct one as you have in other posts.

I finally have a great doctor who I am very comfortable with, he recommended two SCS to be implanted as the last resort for me after many other failed treatments. Never recommended tDCS. I did my research on everything and I am fine with my choice and my doctor. I am able to continue working as I regained use of my hands...this is far from failure.

Nanc

Sorry you had an unsuccessful experience. I sure hope you can get better relief this next go around. Please keep us posted. Since I have RSD in so many different areas in my body, they did the trial on my upper left side, at first I wasn't too happy about it but then it was good because i was really able to compare my two sides against each other. It was a great comparison as the pain was greatly reduced in my left arm/hand and I still had it full force in my right hand. I could tell the difference on how it would feel!

My doctor works with different manufacturers, but St Jude was his preferred company. He said they were the best ones. I understand why, the reps I have are great.

I really hope you are feeling better soon.
Nanc

Can you please provide the reference or link to this information?
Also, have you come across any positive info in all of your researching, beside the 'benefit' you mentioned regarding temporary relief?
Thanks

I really get the whole of the inquiry into all questions about any device to be placed in a human body. Prior to surgery I researched forwards, backwards, sidewards, and on the Z axis looking for anything written about the St. Judes system. I built an entire file regarding my research. Patients who had received the product were willing to be interviewed by me..... and I did. All of this led up to my trial.... where I found out the rep in attendance was not from St. Judes at all. The guy was from Boston Sci.

Now I know Boston Sci has had its issues as well. I have read the articles. Researched the litigation. Been there and done that now on both St. Judes and Boston Sci. Even so, I did accept an implant.

Yep, Ballerina here has visited my profile. I did not see my name on her list, so I reckon she must have read what I wrote. One of the blessings I count in my life is this miracle of the result of the implant having enabled my full withdrawal from all pain management meds, my return to my profession, the earning of revenue, much needed revenue for my family which has now led to our ability once again to own our own home. Why am I distince from others whose system seems to be problematc? Why do I count the SCS as a blessing as Tchr012 now does (sorry Ballerina, but while Tchr012 did have troubles earlier, her later writings include the significant gratitude she now expresses after revision- the news is not the news fully reported unless it is fairly represented)? I am certain success is influenced by patient involvement in the actual program session of their device. Not as a slab on a table responding to a game of 20 questions played out by a rep. I FOUND SUCCESS I BELIEVE, now corroborated by others, by reason of being allowed to "sit at the computer and drive the keyboard as I programmed my device" under the watchful eye of my rep.

I am fully withdrawn from pain meds for well over a year. I am fully controlling pain with the implant. I have not ever had a tweak session as I have not needed any such session, and my rep knows me as someone who calls in to thank him for helping me regain life.

From now until doomsday, I will write, speak, cajole, push, prod, and stump for PATIENT INVOLVEMENT IN THE PROGRAMMMING OF THEIR OWN DEVICE. No rep, physician, or inventor of whom I know has a means of empirically obtaining knowledge how their tweaks affect the human body. Those who attempt programming thusly may as well be truthfully telling their patient "this is my best WAG.... Wild * Guess." We who have experienced programming our devices, though our numbers may be small for now, seem to experience specific beneficial results.

For this reason I am on a campaign to prompt other reps to allow patient hands on programming. Maybe, just maybe it would improve the effect for all users..... including RSD and CRPS. I have written on this forum about my sister in law Terri, who suffers RSD. She asked me to write that post. Her words about the stim I enjoy.... "Oh, how badly I wanted to try that too, Mark! But my doc said I was too far gone and it would not help me." She agreed. She is a double amputee due to RSD. She bears a chipper effort to help others despite functioning on so much Morphine she nearly has no benefit from it any longer either. Pain is her constant companion, an unwelcome companion.

Here is hope for everyone indeed.
Prayers too,
Mark56

I am grateful for all the responses and am looking forward to my trial. Even though I have had rsd for only 3years (almost 3). I have to risk the possiblity of spread, failure, etc. The nervous feeling I had is diminishing some because I know that this could work for me as well.
Marc, I am sorry to hear of your sisterinlaw, I will definitely pray for God to give her some relief. But I was glad to hear you have returned to work and off all your pain medications. This is what I hope for myself and every person in pain. I still remember a day that did not consist of pills and patchs and I hold on to this. I know that everyone has opinions and I appreciate all sides to helping me stay informed. I have done some research on my own as well, but wanted other RSD'ers and SCS'ers opinions and comments of their experience.
My trial is scheduled for Feb. 21 so I will keep everyone informed on my progress.

Your approach and attitude is precisely what this entire forum bound by threads IS all about. Open inquiry into the unknown as you test the waters.

There is no medical procedure without risk, the foundational reason all providers uniformly require we who consume their services to sign off to paper after paper purporting to document our "informed consent" to the risks of a procedure. Rarely do such signatures hold up to the judicial inquiry into bad practice or mistaken misteps in the work done on the patient, but lawyers being what we are, we try to help people paper themselves with protection in hopes it will hold.

So, back to your quest for knowledge, information, a basis from which to decide. I, too, was VERY full of trepidation regarding still another surgery now that I have been through 29 to restore me and, you know, there was a nagging thought in the back of my mind the "law of averages" kicks in somewhere along the continuum and something could go wrong. Bottom line, I WAS afraid. Pure and simple.

I prayed, I studied, I knew life on meds in my bed was not a life which could alone restore income to my family and at one time we had a RICH income. A Huge motivator was I HURT constantly despite the meds, and it was the meds stupefying effect and sedation effect which rendered me asleep much of this time like my SIL Teri [I misspelled it earlier, she will forgive me]. She is driven to sleep quite a bit by her levels of meds, a coping mechanism and definitely not a vivacious life. I wanted more for me and for my family.

Thus prompted, I took the step of Trial surgery to learn still more whether the therapy of SCS could help me with pain management. You know from reading my posts, it did.

Still, I feel for myself and others who may be thus allowed the definite cinching of the bridle and saddle toward the road to success was on top of my excellent team...... I WAS ALLOWED TO DRIVE THE COMPUTER IN THE ALL IMPORTANT POST PERMANENT IMPLANT SURGERY PROGRAMMING SESSION. I know my pain. No one else does. They only attempt to learn via tireless completion of 1 to 10 scale forms some documented indication of my pain. That is the best medicine has to offer given current technology..... a piece of paper with a 1 to 10 scale completed by the patient.

FOR THIS REASON I asked and was permitted to drive the programming of the computer under the watchful eye of my rep. It was elementarily simple, plus every tweak I MADE to the computer produced immediate results I discerned, and through trial and error of my own I did dial myself in. No tweaks thereafter at all. No crying to the doctor for pain management meds because it does not work for me, and you know the rest. I feel utterly blessed.

Now, lest I lead anyone who reads down a path of pitfalls for the unwary, everyone has to know:
1. SCS is NOT for everyone, thus the careful steps leading up to its utilization on any patient. There are patients just ill suited to the stim.
2. Stim does NOT solve all problems. It is a therapy for pain MANAGEMENT and NOT some panacea cure all; in fact, it cures nothing. Its utilization is intended by the manufacturers and users to confound the brain into wrapt submission not to FEEL/interpret pain signals as pain. For this reason, I have written, the body will still experience pain though the brain which interprets it will be confounded.

The result for me is best understood walking in my shoes- Though I have resumed a good portion of my pre-car wreck and trauma life, this body which contains me is still bedeviled by the pain stimulus. No, my brain does not usually recognize it; however, my body builds up to a point of rest requiring fatigue by day's end greater than I experienced pre-injury. I TIRE.

In this recognition, I have come to know I cannot work as once I did routinely. Monday of this past week, I worked from 9:30am to 12:30am the following morning to deal with issues bedevilling me at the office. I tended to practice in this way before injury just because the "law is a jealous mistress" so they teach in law school. I was overwhelmed with fatigue thereafter, because I had put the body through too much, and by Wednesday, it showed in my bearing and my face to my co-workers. I had overdone. I went home early that day and to bed to catch up on rest. Then I implemented a resolve with my understanding corp President to force me away from the office at a more reasonable end of day time.

While stim has enabled my return to work, I STILL HAVE LIMITATIONS, new limitations to integrate into old well established work patterns. I was ultra-successful as a lawyer in my prior corporate life due, in part, to my strength and work ethic. GET THE JOB DONE. Now the work ethic has to be tempered by bodily limitations since pain is experienced by tbe body although usually I do not sense it.

3. Pain- There will still be pain spikes. Times when the pain breaks through and that GAWSH awful burning of hades impedes my gitalong. When a spike occurs, having no meds, I retire to bed and ramp up the stim to the point it overcomes the pain. Now, such levels of stim WILL produce sensations in the body which one may define as uncomfortable.... but the most creepy side effect thus utilized is paralysis rather than parasthesia. I have to be in bed, because the lower half of my body responds to the ramped up stim by stepping over an edge and I cannot will myself to even walk at those moments.

My Doc is concerned by such strong usage, but I am determined NOT to use pain management meds again. We have agreed together I will use the stim in spike contol mode with due care.... running it down to check on the pain spike to determine whether it has abated so I can safely return to normal usage. Thus far no lasting paralysis side effects have remained once I decrease the stim. No whilte papers exist on my usage in this manner, the reason for my doc's concern. We are making history. I am the guinea pig.

I have to confess even with all of this I feel blessed to be back at my profession.

4. I have deep and abiding faith, and it is this feature of my life which has been with me on this life experiment..... so when people wonder "how can you deal with all of this?" I answer "I am blessed, how about you? Have you not prayed for me? Don't you have faith in the prayers you have lifted on my behalf?"

5. Back to Teri, a double amputee high on the thighs of both lower extremities due to the insidious and gangrenous form RSD can deliver. She had no real choice in those events. Phantom pain still is with her. Since she is whole body RSD now in late stage, she exists on morphine as I indicated well over a year ago posting as she requested in this forum. Seeing what SCS "self programmed" did for me, she inquired into possibilities for herself because she would now do nearly anything to escape the pain.... but it is far too late in her case to have any likelihood of success and she is fragile. So, she revels in my success and preaches to others around her who know RSD there is a potential therapy which MAY help. But remember the distinction in my case over most others is the self programming feature I was allowed..... and I rejoice at having been so allowed.

Sorry this is such a long post, but much needed to be written for realism to be presented. SCS is not pie in the sky. It is serious stuff to be approached carefully by one who is not faint of heart.

I pray this may be of help to you ALT, and the many decisions which lay before you,
Here for you anytime,
Mark56

Marc,

It's nice to know and have someone of such great faith as a friend. I understand nothing is without risk, but without taking risks in life we will never know our true potential. Whether a stimulator, a job, education, or marriage. Everything is a risk.
This may or may not work, but I feel I am ready to take this step in life. I also have decided that if this doesnt' work that I want my pm doc to refer me to someone who does ketamine. My pm only does stim's and blocks. He is not pro ketamine at all.
I feel bad for terri and will continue to pray for her relief. Was her only problem RSD?
As far as work, I am not working at all right now and am a nurse by trade. I have re-enrolled in school to get my bsn and hopefully my msn. I would like to go into teaching and legal nursing. (my husband always says I should have been a lawyer) But I know I will never be able to lift another patient.
I also know that I will have limitations and I feel that this will give me the oppurtunity to work from home and still recieve an income.

I am sorry you are unhappy with being so listed. Once again, I merely listed what folks reported regarding Spinal Cord Stimulators being used to treat Complex Regional Pain Syndrome resulting in failure, revision and or spread of the CRPS. The reader of the posts may decide for themselves the level of risk they are willing to take. My list is only a partial list since I only spent a few minutes searching.

Regarding my posts about the equipment failures, many folks would like to be as thorough in researching medical devices put into their bodies as they would the safety rates of cars they are buying.

It is not surprising that your physician did not suggest tDCS prior to SCS implantation. Hopefully it was not due to financial consideration but rather ignorance of the procedure. There is now training in the administration of tDCS available to physicians.

The Institute for Noninvasive Brain Stimulation of New York, Beth Israel Hospital www.newpaintreatment.org/
I was impressed when I recently checked the website. Now they are actively seeking patients for tDCS treatment of pain. When I sought treatment there this time last year I had to work to get in. Now they are offering training in tDCS to physicians, which includes its application for CRPS.

2) There is a brand new Brain Stimulation Clinic in Atlanta, that just opened this month. www.transcranialbrainstimulation.com/
This is offered through a private pain treatment clinic operated by Dr. James Fugedy, who, interestingly enough at one time recommended SCS for CRPS but stopped doing them because of the high failure rates. He might be a good resource for any physician seeking to learn about tDCS.

3) The Brenson-Allen Center for Noninvasive Brain Stimulation, Harvard Medical School. http://tmslab.org/
This facility offers specific physician training in the application of tDCS to Complex Regional Pain Syndrome and related form of neuropathic pain.

Do I think CRPS patients should be informed of and offered all non-invasive and effective treatments prior to SCS implantation? You bet! Do I think if all options are not exhausted first CRPS patients should seek the opinion of another doctor? You bet!

It is not that I don't feel SCS is a "correct" treatment for CRPS. When I called the manufacturers and ask for research demonstrating the safety and long term effectiveness of their product in the management of CRPS, they could not provide that to me.