I just scheduled my SCS trial for April 3rd and the nerves are setting in. I have RSD in my foot and have tried all sorts of treatments and 2 years later, I'm still struggling. My Pain Mgmt doc is hopeful that this will lessen my pain greatly and decrease the Rx's I'm on so I can get pregnany later this year....

One problem is that I'm very scared of the procedure. And even more, if it's successful, I'm afraid of the perm procedure but I'll cross that bridge when I get there.

Has anyone had the trial recently? If so, what was your experience? How much pain during recovery? What limitations did you have? Any advice or tips on how to make this a positive experience?

Any advice would be most appreciated! I'm not one of those girls that likes sugar coating.... I like the truth.

Well Kelly, first things first- WELCOME to this corner of the universe!

The Truth = http://neurotalk.psychcentral.com/thread117854.html

Plain, unvarnished, cold, painful truth.

No surgery is painless. I have seen for a Dentist who proclaims Pain Free, and I know they are lying.

I am a lawyer, so if you do not trust folks of that profession, hang up on me right now. But, had I not gone for the SCS, I would not be here right now. My family would have collected on my life insurance, at least I hope, for I read them with great precision, and THEY WOULD BE SCARRED FOR LIFE, GENERATIONALLY.

You want truth, I give it freely, dispense it daily, along with hope [not a political word for me].

I ccould not practice law effectively, now I am working at my best again helping a company to flourish, and enjoying the rebirth of my career. I was imprisoned and no visitors came unto me, so with SCS I was released from the "prison" of my bedroom where pain incarcerated me. I was allowed to program my own SCS computer generator unit, and have never had to have a tweak. The unit has functioned perfectly since its implant in June 2010.

The biggest drawback from the Trial surgery was the END of the Trial period and the removal of the Trial leads. I was immediately restored to the very fires of hell. Only to be released some weeks later when the permanent implant was installed and I programmed it. YOU MUST PUSH HARD to be allowed to program your unit. To my knowledge there are only three of us in the entire world. All of us have had Great Experience. Most others have complained of imprecise programs, because technicians can only guess what is going on inside your body, because the surgeon 38592 up in the first place [lawsuit for malpractice], because the implant should never have been done [another possible cause of action], or because the implant has been so wrong for the patient due to defect or exacerbation of pain a third surgery had to be performed to rip it out. Not quite as graphically as that, but I agonize over my friends, Saffy and Sophie, to whom this occurred.

My life is restored to some semblance of my prior life. People tremor at hearing I am working on a case because I do not lose, for my client's interests are paramount and ethics is of the highest principle. Others joy at the knowledge I am coming for they feel a moment's respite because I am come to dispense greetings, time shared with the elderly and infirm and the ill, and I feel blessed to the core of my bones God both inspired such an invention and allowed my inclusion in the short list of recipients.

Truth?
You got it,
Now, I will pray all goes well for you,
I will never know whether I may become pregnant because my body is male,
but I have been blessed with four children who are the apples of my eyes,
and my wife is the joy which brings to me a certain peace of devotion each day,
I am blessed beyond measure,
Yes, I still hurt, but it does not hold me back,
Mark56

Welcome to the forum!

The support here is fantastic, as we all have been where you are and we know exactly how you are feeling. Hopefully that in itself will help to make you feel a bit better. When I got my unit over 2 yrs ago I was desperately looking for feedback from others who had SCS's. This forum has been a lifesaver.

One piece of advice I would share is, try not to get too wrapped up in the 'negative/scary' stories you might have read about. It's good to be aware of all the angles of this, but try to remind yourself of how you've got to this point. If your pain has affected your quality of life and you've exhausted all other modalities, then this might just be the thing for you. That's what the trial is all about.
If you have confidence in your doctor and he is experienced in this, then do the trial and see if this might be something that can help you in your pain management and give you back a life.
There are many folks here who will gladly share their experiences. Meanwhile, feel free to cruise thru the threads here and you'll get a good idea of what to expect, how to prepare, managing recovery, etc.

It's great to have you here!

Rae

Hello Kelly! Welcome to NT, a place that I have found great information and support.

I went through my trial June 1, 2011 and then had two SCS implanted on June 29. I have both cervical and thoracic stims. Mine was also for RSD, pretty much all over. The procedures for the trial and the permanent were painful, but THAT pain is only temporary. As Rae said, do not get wrapped up in all the negative stories. There are plenty of success stories for SCS implanted for RSD.

I was literally at the point of losing use of my hands and regained it because of the cervical SCS. I couldn't even raise my left arm, but can now! The thoracic SCS...there have been a few issues and they had to go back in to change out the percutaneous leads for paddle leads because they moved. Paddle leads are supposed to be more stable. We are still working out some things with that SCS, so I can't crank it up like I really need to...BUT I can keep it on a lower frequency and I am getting more relief than I ever did before I got it.

I went through many different treatments- blocks, PT, drugs, etc. I couldn't tolerate PT, blocks didn't help this go around and I cannot tolerate most meds and so on. I was so nervous when I had the trial and permanents implanted. But I knew where I was at this point in the game and I trusted my dr. I knew what I had to do for me. This has helped me greatly and it is the best thing I have done.

Wishing you the best on your upcoming trial!
Nanc

Hi Kelly,
I'm brand new to this forum as well but after looking around, it's just the support and information system I need! I have an appt with my Pain Mgt Dr on Monday for the SCS consultation. He discussed it with me last year and I guess I "chickened" out....after going thru 3 nerve ablations on the cervical area and more steriod injections than I care to mention, this is a last resort for me. I have 9 herniated discs, fibro, you name it...i have it...

I'm sure you'll do fine with your surgery. It's not uncommon to be a little antsy when faced with an invasive procedure. Personally I'm looking forward to it! If I can reduce my rx's in any way, I'm all for it!!


Keep us posted!!

Hi Kelly & Nana,
Welcome to the forum! I've recently had my permanent implant done and had my trial last august (takes a while on the NHS). The trial really isn't bad, don't worry about it, it did make my back a bit sore but not anything to shout about. As Mark wrote, the worst thing is when you find it's helping and the remove the leads while you wait for the permenant. The trial is all done through a needle so there's no incision on your back at all.
The permanent was much more of an operation, and I won't lie the first week after surgery was painful, however this is pain that goes away. I'm 6 weeks on now and my back is doing well. I had a slight hick up with the machine moving but its sorting itself out now.
Ask as many questions on here as you can, everyone is really helpful and supportive.
I also have RSD (or CRPS as my doctor calls it) in my left foot and have been suffering for twenty years. I've tried everything but a chainsaw so was so glad when I found out about SCS. I'm going back for a re-programming session on wednesday and am very tempted to ask if I can do it, as Mark points out it makes much more sense as its only us that can feel the stimulation. Don't reckon they will let me but one can only try
Really hope your trial works out for you, keep us informed. Try not to worry to much, it really isn't as bad as you are imagining.
Rachel x
P.s. Rae, thought I would join you with a bit of text colour

A Big WELCOME to you too!

I'm a Nana too! Oh what joy my grandson brings me!
It's great to have you here with us! Let us know how your Monday appt goes - I was just like you. I drug my feet with pursuing this when first presented with it. It sounded just plain CREEPY to me!
But like you said, after trying everything possible, we circle back around to this option and put our hope in it.
I'm so glad I went thru with it. I'm by no means completely pain free, but at least I am not writhing around in bed at nights wishing I could take an AXE to both my legs!

I've been able to get much of my life back and I hope your experience proves to be just as successful.

Glad you found us!

Rae

axes solve no problems and cause more. Instead, let's pray about moving mountain ranges. Follow God. Follow Nana's steps. Cleo wants to be called Grandma Cleo. Sam due mid May.

Faith will bring forth healthy children to a couple who lost one last May,
Faith will help us move mountain ranges so we may take our care into our hands because a government should not manage this for us,
Faith will help us accomplish together what separated seems impossible,
Just look at Tara, and tell me this is not the result of persistent faith,
asking about whether she has limitations,
that is faith greater than a mustard seed,
Watch Tara grow in grace,
Loving it,
Praying,
Mark56

Dear Kelly,
I am so sorry you are traveling the CRPS road. Since you don’t like things sugar coated and since one of the most risk filled procedure you can have when you have a CRPS diagnosis is a spinal cord stimulator I am sharing my truthful experience as well as links to other truthful experiences, of many like you who have had the devices implanted and been made far worse. Here is my first post on the forum from February of this year to provide you with my experience.

"I have recently joined the forum and hope to help others through my successes and failures with treatment for CRPS. I was diagnosed with CRPS in 2006 after run of the mill knee surgery, which began my CRPS trouble. After trying the usual treatments (blocks) and the more unusual treatments (HBOT) and the typical array of meds, my condition only worsened. My pain management doctor suggested a Boston Scientific Spinal Cord Stimulator. I was nervous but desperate for pain relief. I spent hours on the internet reading first hand descriptions of success stories. My trial was successful and although recovery from the actual implantation was grueling I was excited to get my life back. I had a good experience with the Boston Scientific rep, starting with my request to do my own programming, which hastened tweaking my stimulation. (I now know that self-programming has no relation to positive outcomes for SCS and CRPS patients. A patient receiving a spinal cord stimulator behind CRPS and self-programming is like a passenger being permitted to steer the Titanic behind the encounter with the iceberg.)

I was so sold on my experience that I became an outspoken advocate for SCS for other CRPS patients. Unfortunately, after about 20 months the stimulator just stopped working. A revision surgery caused a spread to my other leg and another revision resulted in a spread to my wrist shortly thereafter. When the doctor suggested implantation of another stimulator to address the wrist pain and try to get me out of the wheelchair that the failed SCS left me in I decided I’d had enough and it was time to do some real research.

I had the good fortune of being evaluated by a knowledgeable neurologist who I wish I had found prior to the SCS implantation. He explained what my own research had already uncovered.

Spinal Cord Stimulators (even the competitors of Boston Scientific like St. Jude) have long-term success with types of pain like Failed Back Syndrome. Relief for CRPS is at best limited to months or a few years. SCS for CRPS eventually increases and aggravates vasoconstriction and inflammation and further disrupts brain plasticity (the culprits of CRPS.) The eventual result of my spinal cord stimulator was rashes, sores, swelling and my alodynia was much worse than prior to implantation. Additionally, each revision surgery began a new area of CRPS pain as well as initiated the spread to my other leg and wrist. The neurologist explained this action to me in this way: The stimulator stimulated the pain fibers in my spinal canal, which spread the CRPS to other areas, like a freeway efficiently facilitates transporting vehicles to distant locations.

I told the neurologist that my pain management doctor said the spread had nothing to do with the SCS and that “CRPS spreads” and to prove his point he suggested I “ask the rep or call the company.” My neurologist found this laughable and stated, “Conversations like this demonstrate ignorance, greed or both.” Regarding the rep, I couldn’t have asked him questions if I wanted to because as soon as he found out I refused additional business for him he ignored me-yes totally acted like I was a stranger in the waiting room. When I approached him and asked to speak with him he claimed he was “busy” and would call me. Never happened.

My biggest regret is not that I failed to do my own research prior to implantation, or that I did not listen to my gut with the revisions, or even that I ignored the many warnings of other CRPS patients who had similar failures, or that I didn’t notice that the “success stories” were from people who had their stimulators for relatively short periods of time-months to a few years. My biggest regret is that I assertively encouraged other similarly desperate and naïve people with CRPS to have spinal cord stimulators implanted. Three of these people that I know of have had failures after initial good results, which, like me left them in much worse condition.

Since I can’t undo the damage I have caused others the only thing I can do is to share my experience and encourage others with CRPS to “just say no” to spinal cord stimulators, no matter how desperate you are for pain relief.

I was working when I was implanted. Now I am working my way out of a wheel chair and fighting spread, dystonia, skin infections, rashes, and alodynia that is far worse than prior to implantation.

My condition is now rapidly improving through the use of tDCS, which I learned about from this forum. How I wish I had tried this treatment prior to being debilitated by the spinal cord stimulator.

If you are considering a SCS the last place you should go to ask about risks is your pain management doctor (who stands to loose upwards of $40,000 if you decline, even more with revision surgeries), the company rep and testimonials of patients less than three years out from implantation.

I wonder where I would be today if the fork in the path had led me to tDCS rather than to a spinal cord stimulator?

It is better if I don’t really think about that too much but I hope others who still have a chance to protect themselves will."

Kelly, for additional information please carefully review the following links. You will find an excellent checklist to take to the physician who will be implanting the device. How I wish I had this tool and used it prior to being implanted with the device. There is also a list of CRPS patients who have had spinal cord stimulator failures, revision surgeries, spreads of CRPS and/ or explants of the device. After reviewing this information I suggest reading the tDCS thread on the RSD/CRPS forum. Think about why your physician has not suggested tDCS prior to a considering a spinal cord stimulator.

Please put the brakes on this procedure until you have done your homework. My only homework consisted of listening to the doctor who stood to make a hearty profit on the procedure, the company rep (need I say more) and the comments of a few on line people with CRPS who had the stimulators for relatively short periods of time. (less than three years) If I had looked more carefully at that group I would have seen that it was more of a “leap and pray” approach than anything rooted in reality. Prayer is great but if that is all you have to throw at the procedure you are asking for an experience like mine. Please feel free to send me a pm if I can provide you with more support.

st. jude stimulator.webloc


spinal cord stimulator f#399B3D


P.S. Please see Hooshmand's website for information on CRPS and Pregnancy. I am very concerned about any physician who would suggest a Spinal Cord Stimulator as a path toward pregnancy.


I received notification that the links were bad-try these:

http://neurotalk.psychcentral.com/thread161951.html

http://neurotalk.psychcentral.com/thread163281.html

How can I possibly thank you more for the open and heartfelt wisdom you have shared for Kelly to see and learn. You are blessed in your outreach to help others know truths beyond salesmanship of some physicians.

Extremely grateful am I,
Mark56