Our Stories & Introductions

[Russell]

I don't know that much about scs but i jumped in to welcome you go the family...

[ballerina]

Originally Posted by ShelbyG

Hi! My name is Shelby. I am 38 and have had RSD/CRPS for 8-9 years. I am on day 5 of a 7 day spinal stimulator trial, which for me, has worked amazingly well. I came across a post earlier where someone said one the trial was over, the pain returned almost immediately. Is that true? Not that I really expected it to "go away" but I was hoping for more of a break in between. I've been told my permanent surgery will not be for 2-3 weeks. I honestly only first heard of the stimulator a month ago when I went to a new doctor in town on my own (this is a work comp issue - and that's a whole other story) and have "survived" somehow on stellate ganglion nerve blocks, radiofrequency ablasions and numerous meds.

Any advice, thoughts, suggestions would be greatly appreciated!

Thank you!

Shelby

Welcome Shelby!

So sorry you are joining our "club" but you have come to the right place to educate yourself which will make you a better self advocate.

Unfortunately, radiofrequency ablasions and spinal cord stimulators are two of the most risk producing procedures you can undergo with CRPS. Please put a hold on your permanent SCS implantation until you thoroughly educate yourself and conduct your own independent research. Once permanent damage and spread is caused by SCS it cannot be reversed.

Please consider other more state of the art and non-invasive treatment prior to undergoing a Spinal Cord Stimulator.

If you physician is unfamiliar with other treatment options, consider a second or even third opinion.

[ShelbyG]

Originally Posted by ballerina

Welcome Shelby!

So sorry you are joining our "club" but you have come to the right place to educate yourself which will make you a better self advocate.

Unfortunately, radiofrequency ablasions and spinal cord stimulators are two of the most risk producing procedures you can undergo with CRPS. Please put a hold on your permanent SCS implantation until you thoroughly educate yourself and conduct your own independent research. Once permanent damage and spread is caused by SCS it cannot be reversed.

Please consider other more state of the art and non-invasive treatment prior to undergoing a Spinal Cord Stimulator.

If you physician is unfamiliar with other treatment options, consider a second or even third opinion.

What else is out there? I've been to 3 different pain specialists, at least 10 different pt/ot, done the nerve blocks which give minimal relief and as of today am on 13 different medications. I really questioned doing the SCS but I personally have had such great results already that I can only imagine they would improve with a permanent implant that isn't moving around. My pain level is consistently at least an 8/10. My RSD/CRPS is in my left hand and arm, luckily not my dominate arm, but I cannot button, tie, shave with that hand, blowdry my hair, straighten it, open a package, nothing. Did no one else have any positive results with the SCS?

[ballerina]

Originally Posted by ShelbyG

What else is out there? I've been to 3 different pain specialists, at least 10 different pt/ot, done the nerve blocks which give minimal relief and as of today am on 13 different medications. I really questioned doing the SCS but I personally have had such great results already that I can only imagine they would improve with a permanent implant that isn't moving around. My pain level is consistently at least an 8/10. My RSD/CRPS is in my left hand and arm, luckily not my dominate arm, but I cannot button, tie, shave with that hand, blowdry my hair, straighten it, open a package, nothing. Did no one else have any positive results with the SCS?

Dear Shelby,
Please see below.

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

http://neurotalk.psychcentral.com/sh...timulator+CRPS

Have you tried tDCS. It is non-invasive with no side effects. If your doctor does not know about it maybe it is time for a second opinion.

Please give yourself time to thoroughly research the very real danger of SCS and CRPS.

Take care and Thinking of you!

P.S. You might consider starting a thread on the RSD Forum asking for input from folks with CRPS who have had spinal cord failures for examples of the risks.

[Nanc]

Welcome Shelby!

I have RSD/CRPS in the right side of my face, both hands, left arm, left leg and possibly my right leg. I was losing the use of my hands. I had the trial on my left side and it was successful, so I had the SCS implanted in June 2011...actually two of them implanted (cervical and thoracic). My pain was reduced drastically and I regained the use of my hands. I am by no means pain-free, but pain reduction is huge when I was a 9/10 all the time.

Now, the thoracic SCS has not given me as much relief. In November, they went back in and changed the leads to paddle leads since they moved and were causing more pain. Right now I am having some increased pressure in my lower back and the dr is going to do a RFA procedure (if the anesthetic injections help). I still use the thoracic SCS and it helps, just not as much as it should.

The dr recommended the SCS for me since we had exhausted everything else. I do not regret my decision to get either one implanted. Yes, we are still tweaking one of them, but my pain is reduced. As soon as the stimulators are turned off, the pain is more intense. I was miserable when the trial was over and couldn't wait for the permanent to be implanted!

Everyone is different and responds to each treatment differently. You just need to take all the information you have been given and research it. That way you can make the best decision you can for yourself, and one that you can be comfortable with.

Wishing you all the best,
Nanc

It is a

[ballerina]

Hi Shelby,

I don't know the manufacturer of the device you have chosen but Boston Scientific is a good example. Boston Scientific gives lots of grant dollars to prove the safety and long term effectiveness of their Spinal Coed Stimulators. They have rejected all proposals to put their device to the test for CRPS because they know that there is no long term benefit and the risk of spread and failure rate is high.

Boston Scientific is currently funding research for failed back syndrome, which has been a mainstay of their advertisements for years. It is already well documented that SCS by Boston Scientific and other manufacturers are safe and effective long term for failed back syndrome.

Boston Scientific's application to the FDA for approval of their device included research that did not support their SCS's safety and long term effectiveness for CRPS. Their own physician's clinical manual does not recommend the device for CRPS.

When reviewing success stories as well as failures for Spinal Cord Stimulator implantation to treat Complex Regional Pain Syndrome, please be mindful of the length of time the device has been in place for the successes as well as for the failures. Also be mindful of the fact that Spinal Cord stimulators do not stop the progression of CRPS and many times can ignite a spread. Additionally, spinal cord stimulators only disguise the pain signals and do nothing to reboot the nerves. A positive SCS trial has no bearing on future success with CRPS, unlike other conditions like failed back syndrome, which has a very low failure rate.

Please consider tDCS which deals with the root of the illness, has no side effects, no tolerance build up and is not invasive.

You have nothing to loose by trying it prior to SCS implantation.

Hoping that better days are ahead for you!

[SandyRI]

Originally Posted by ShelbyG

What else is out there? I've been to 3 different pain specialists, at least 10 different pt/ot, done the nerve blocks which give minimal relief and as of today am on 13 different medications. I really questioned doing the SCS but I personally have had such great results already that I can only imagine they would improve with a permanent implant that isn't moving around. My pain level is consistently at least an 8/10. My RSD/CRPS is in my left hand and arm, luckily not my dominate arm, but I cannot button, tie, shave with that hand, blowdry my hair, straighten it, open a package, nothing. Did no one else have any positive results with the SCS?

Ketamine infusions changed my life. You should definitely do more research before having any surgery performed.

[ShelbyG]

Originally Posted by Nanc

Welcome Shelby!

I have RSD/CRPS in the right side of my face, both hands, left arm, left leg and possibly my right leg. I was losing the use of my hands. I had the trial on my left side and it was successful, so I had the SCS implanted in June 2011...actually two of them implanted (cervical and thoracic). My pain was reduced drastically and I regained the use of my hands. I am by no means pain-free, but pain reduction is huge when I was a 9/10 all the time.

Now, the thoracic SCS has not given me as much relief. In November, they went back in and changed the leads to paddle leads since they moved and were causing more pain. Right now I am having some increased pressure in my lower back and the dr is going to do a RFA procedure (if the anesthetic injections help). I still use the thoracic SCS and it helps, just not as much as it should.

The dr recommended the SCS for me since we had exhausted everything else. I do not regret my decision to get either one implanted. Yes, we are still tweaking one of them, but my pain is reduced. As soon as the stimulators are turned off, the pain is more intense. I was miserable when the trial was over and couldn't wait for the permanent to be implanted!

Everyone is different and responds to each treatment differently. You just need to take all the information you have been given and research it. That way you can make the best decision you can for yourself, and one that you can be comfortable with.

Wishing you all the best,
Nanc

It is a

Thank you Nanc! It was a relief hearing from someone that this worked for. I realize that this isn't going to be an "easy" fix per se and that I will have a lot of tweaking to get things right, but for me, living at a 10/10 every day and not being able to function in the least little bit helps me feel confident that I'm making the right choice. I truly appreciate you sharing with me!

[LeslieS]

My daughter is 19 and was diagnosed with RSD last summer and we have been treating here in Hawaii with no success. We are prepared to travel to get her better and would prefer a west coast city but might travel further. Can anyone give me a recommendation?
Thanks in advance

[Nanc]

Originally Posted by ShelbyG

Thank you Nanc! It was a relief hearing from someone that this worked for. I realize that this isn't going to be an "easy" fix per se and that I will have a lot of tweaking to get things right, but for me, living at a 10/10 every day and not being able to function in the least little bit helps me feel confident that I'm making the right choice. I truly appreciate you sharing with me!

Hi Shelby!

Happy to share with you! You know you have to make your own decisions and choices. And everyone has their own opinions and experiences that are certainly worth hearing about, that helps in making those choices easier. But there are good results from the SCS that should be heard. If it was so horrible, they would be off the market! I researched and thought long and hard before I got mine. It truly was the last resort for me and luckily I have insurance coverage. You and your healthcare provider have to be comfortable with your choices, and you have to be comfortable with him/her.

I read the good stories and the bad stories of its use for RSD/CRPS before I made my choice. I would do it again as I have regained the use of hands. As I said before, I am not pain-free but I can use my hands again. St Jude told me that they shoot for at least 50% pain reduction, if you go from a 10 to a 5, that's huge!! If I am a 6/7 today instead of a 10 in my hands and I can do my job, I am doing great!

I had my first set of injections Tuesday in my lower left back and right hip and they helped, so I think we are on the right path to getting the thoracic SCS working better now too

Wishing you all the best,
Nanc