[Neko1221]

My new pain doctor talked to me today about the possibility of a SCS - I immediatly told him No, and that I have read almost nothing but bad things about SCS and RSD. He told me not to believe everything I've read and to ask for peoples good experiences and not just the horror stories. Have any of you had a successful SCS for RSD?

[yellow]

There are several people on here who have had success with an SCS for RSD, including me, and I'm sure everyone will show up and share their experiences with you. The thing is that, with any RSD treatment, there is a possibility for it to work and a possibility for it not to work. The good thing with an SCS is that you get to go through a trial first, so that you're able to see if it works to help your pain and if it is something that you think you can and would like to live with.

There are risks of spreading with the RSD, as with any surgery. I think that's what most people are worried about. The doctors should be able to do blocks beforehand, though, to help reduce that risk of spreading.

I tried so many other different treatments before I came to spinal cord stimulation, and none of them were successful long term- the pain would come back when they'd wear off or the tubes would come out. That's why when my doctor suggested an SCS I looked into it, because of the permanent aspect to relieving pain. I did a lot of research of my own before agreeing to anything, and I definitely encourage everyone to do the same so that they know what they're getting into. I decided to go with the trial, and it went really well, reducing my pain a lot. So I went with the permanent, and I am so happy I did. My RSD pain in my legs is much more manageable now, and it doesn't have so much control over me.

Since then the RSD has spread to my wrist. After trying less invasive options first again with no success, I've come to the decision, through much deliberation, to pursue a trial for a cervical SCS for my wrist. I start the trial for that this Thursday, and if it goes well, I'll go forward with the permanent. There is a lot involved with this whole process, but the relief that I get is worth it.

Good luck with your decision and any questions you have, be sure to ask them because everyone will be happy here to provide answers!

[pooh_ac]

I am one of the users here. I am curretly on my 3rd unit. I had typed out a long winded response and lost the darn thing so here is my condensed version. I searched long and hard to find my current doc and his clinic. I have fought with MANY doctors, therapists (physical and mental) and myself, on my current journey.
My 1st unit, I cried when they took out my trial leads, then cried almost daily as the pain came back with such a vengance, I also cried because my insurance company and the then clinic manager drug their feet getting my permant unit approved. It took a ranting RN to convince her that she had sent the information to the wrong insurance company and to reapply to the proper insurance. I burned throught the battery on this unit in just under 2 years, this was due to the high energy usage I was using to cover my pain.
My second unit the leads were pulled loose during a fall that resulted in my shoulder being dislocated, was not a good time for me.
My current unit is yet again another Medtronic unit. It is a rechargeable unit and I am halfway through its battery life time. I have had it "tweaked" several times and as a mater of fact, tomorrow I will once again drive the 200 one way miles for yet another tweaking session.
My friend Mark will be coming along in the near future to introduce himself. He currently has a boston scientific unit that he programed himself (yes) with his rep over his shoulder. He has not required any "tweaking".
There are even people here who have 2 units for different levels of pain.
So If you trust your doc, allow him to give you some names of his current SCS users, or ask more questions here!
WELCOME

z

[Rrae]

Welcome to this neck of the woods!
It's very smart of you to be doing your homework on this. This is a very individualized treatment modality and no two of us are alike. If you have confidence in your doctor and he has alot of experience with these, then it's probably a good thing to check into. If your pain has robbed you of a quality of life and no other treatments or medications has helped, this would be something to look into.
And like Yellow said, the trial gives you a chance to really get an idea if this might be something for you.
I too am very thankful for what the SCS has done for me painwise AND mentally! You will read quite a few 'happy' stories here, but that does not go without saying that revisions have been necessary for many of us. Some people get that confused with 'unsuccessful' outcomes, however. There are several circumstances when a revision might become necessary and I would go thru it 50 times over to continue getting this relief if I had to.

Then, as you are well aware of, there are the bad experiences to be aware of.
It's good to do alot of reading. You'll find a wide array of testimonies here and everyone is very helpful.

It's nice to have you here!

Rae

[Mark56]

Pooh and Yellow, and that lurker Rae, whose lips seem to be sealed right now....... wutcha got Rae, wildncrazy glue on ya? I mean, YOU are the most Vvvvvocal of us here with all of the smilies and all...... how did I post before you?

So Neko, ifn you want a chance at being capable of leading a company which manufactures and sells products of your own invention in 50 countries, practicing law for the sake of a company which is growing as fast as a child fed steroids, while being engaged in pro bono practice helping people who cannot afford to pay, while leading a community group of folks who are seeking employment and mentoring some one on one at coffee shops, then teaching wondrous studies about God in cool classes on Sunday, and being excited to the highest by your family, friends all over the world, and the Creator........ all having withdrawn from ALL pain medications which were prescribed as you live life having never had to have a revision surgery or a silly tweak of a program by some technologist who has NO CLUE what pain is like lived within your skin....... then you hop a plane, train, bus, truck, motorhome, automobile, bike or skateboard and you get yourself out to the Denver area where I will personally introduce you to the docs who treated me, and the Boston Scientific Precision Plus Spinal Cord Stimulation tech whom I had the pleasure of releasing his seat in front of the computer after I said "you do not know the first thing about the pain in my body, so what makes you believe you are capable of providing programs truly helpful to manage my pain?" He allowed me to take the computer under his watchful eye and program my own SCS. First in the world I believe according to my doc. Three more since then to my knowledge.

All of we who self programmed have lived the results I attained after surgery 30 June 2010. No tweaks, and working as described above!! This was my answer!! God's great benefit to my life, and I feel blessed.

So, if this does not intrigue you in the least, do nothing. Take pain meds.

If it does intrigue you take a gander at the following thread= http://neurotalk.psychcentral.com/thread117854.html .

It will take a while to read. You may believe it or challenge it. I am here as proof of what went right in my life, and good YOUNG Rae [I say that because we actually were able to meet, and I found she is a great lady with husband and family fully in love with her] who is actually younger than I am, would be willing to tell you exactly like it is for me, as she has seen me bouncing off of walls, leaping tall buildings with a tightly wound trebuchet, slower than a speeding locomotive, impervious to nothing at all, BUT, a person who now lives life as fully as I may because by the grace of God shown through compassionate physicians who reached out with terrific expertise and released me from the prison of pain. I KID YOU NOT. There is a saying known about me in the law- I Never bluff an opponent. Cut them down to size and defeat them, yes, but never bluff. That kind of kid stuff is best left to poker where people pretend to make serious money.

Nuff said, or Pooh will convince me to be quiet.
Yup,
Have questions? Lay them on,
Mark56

[Mark56]

I feel like the guy who was bidding on an online auction service widely known and somewhat fun...... then losing the item with a robotic placed bit in the last ten seconds of the bidding war. It has been fun running up the price for them before though. I never needed any nose shears for gentlemanly grooming anyway..... how else do you think those guys are able to keep a handlebar moustache?

Truly I jest,
You did leave out the fine smilies though,
I saw you,
yes you did,
Mark56

Welcome to this forum

I have the SCS since August 2010. There are many companies who specialise in the SCS. Boston Scientific being one. I have one from St Judes. I find it very good too. Over the past two years I would have become more relaxed and mentally in a better place. I certainly wouldn't be without it. I suffer with failed back syndrome.

There are lots of people here with different stories good and bad but well worth reading through. Some have the same units others are a different company. But of those who do have good results they also have different manufactured units not all just from one company So please make sure if you do go ahead with even a trial once you have made up your mind, that you look into all the companies and see what they have to offer.

So before you make a definite NO do take time to read through some of the posts good and bad. And take it from there

Best of luck

Jackie

Ps although I don't reprogramme myself, this is done by a rep from the company, I too get good results from my stim. I know Mark wants everyone to programme their own units but this isnt always possible so don't be put off if you are told that you can't. I'm happy with my results for now. I certainly would not be without my unit

[Nanc]

Hi Neko! Good for you for doing your homework and asking around about the SCS! We are all different in how we respond to treatments. My dr recommended it since it was my last resort, I had to do some serious thinking on this one. I came to this site and read posts as well as posts/info on other sites. I had complete confidence and trust in my dr so I moved forward with it...so happy I did!! I have two of them, St Judes, one thoracic and one cervical. The "twins" were implanted last June at the same time. In November I had to have the percutaneous leads on the thoracic stim replaced with paddle leads because they moved. At that time I also had that battery moved because it was very uncomfortable...so much better now on my front/side! This "revision" was certainly not a failure...it was making it better for me!!

I had tried soooo many different treatments, nothing would help and I was losing the use of both my hands. Not good when you are in finance & human resources! The SCS helps me oh so much, my pain is not gone but it is greatly reduced AND I regained the use of my hands!!! The surgeries have not caused spread for me, only my clumsiness has...I keep hurting myself (not on purpose either).

So, I wish you luck in your search for information and your decision making.

Nanc


PS - I do not program my stims myself either. I have awesome reps who really listen to me that do the programming.

[CoralToe]

Hey Neko!

It looks like most have chimed in already - but will add my 2 cents to the pile. I have suspected RSD in my foot, and finally agreed to the SCS trial last fall. Was implanted this past January, and am currently weaning off the meds. This has - BY FAR - been the single best decision I have made...I honestly feel that I am waking up from a nightmare. With the cloudy haze of meds and pain - I felt I was losing hold of living. Now, I feel I have been given a second chance. I am HAPPY for the first time in years!

As others have said though - there are things you need to take into consideration. First, you must be in the right mindset for this. When my doc first mentioned SCS - I thought it was overkill, and that I didn't need it. Eventually as my pain continued, I started reading forums (both hear and on healing well) - and eventually came to the decision that it was worth a shot. Once the trial was implanted, I remember standing in our living room crying - because I had forgotten what it was like to not hurt. The day my leads were pulled out - I cried again...and was severely depressed as my pain came back full force. I too had complete trust in the doc who did my implant - you need to make sure that they care about your well-being...not just the paycheck they will get from implanting another SCS. Finally, as Mark already described - try to convince your rep to allow you to self program. I was allowed this - both for my trial and perm...and like Mark, I have had no tweaking required

If you have any other questions let me know. I actually have a video of my surgery - that I hope will be up soon (my Doc and I are starting a blog/askthepaindoc website, and that will be on there).

[Mark56]

Originally Posted by CoralToe

Hey Neko!

It looks like most have chimed in already - but will add my 2 cents to the pile. I have suspected RSD in my foot, and finally agreed to the SCS trial last fall. Was implanted this past January, and am currently weaning off the meds. This has - BY FAR - been the single best decision I have made...I honestly feel that I am waking up from a nightmare. With the cloudy haze of meds and pain - I felt I was losing hold of living. Now, I feel I have been given a second chance. I am HAPPY for the first time in years!

As others have said though - there are things you need to take into consideration. First, you must be in the right mindset for this. When my doc first mentioned SCS - I thought it was overkill, and that I didn't need it. Eventually as my pain continued, I started reading forums (both hear and on healing well) - and eventually came to the decision that it was worth a shot. Once the trial was implanted, I remember standing in our living room crying - because I had forgotten what it was like to not hurt. The day my leads were pulled out - I cried again...and was severely depressed as my pain came back full force. I too had complete trust in the doc who did my implant - you need to make sure that they care about your well-being...not just the paycheck they will get from implanting another SCS. Finally, as Mark already described - try to convince your rep to allow you to self program. I was allowed this - both for my trial and perm...and like Mark, I have had no tweaking required

If you have any other questions let me know. I actually have a video of my surgery - that I hope will be up soon (my Doc and I are starting a blog/askthepaindoc website, and that will be on there).

Oh BOY how I am looking forward to seeing your blog site! Nothing like following a miracle with yet another, oh, and hey, despite your doc having had nothing to do with my case, if you would prefer to launch with multiple patients reporting, I would gladly join in for critical mass.

In the meantime, I am glad you are weaning from the meds, just take it easy with the after effects, and remember, you may need Librium to come down slowly after the last opiate, followed by careful observation in case you slip into post med depression as I did.

The life in the everafter of blessing is wondrous, and I am living so busily it is truly a release from the imprisonment of pain as one rejoins the world at large.

Prayin for ya and for Neko
Mark56