RSD and Spinal Cord Stimulator

[Baileygirl23]

I'm new to this forum and hope I'm doing this right    LOL

I have RDS and it's gotten to the point that the pain meds (morphine pills, percocet & neurontin) are not working as well.

Does anyone out there have the SCS and if so, could you please, please give me some insite.  I might be getting the trial the end of July and I'm scared out of my mind to try this.

Please let me know.
Thanks..........................

[tresa47]

Hi ..i  have had a spinal cord stimulator for a year and a half...it's given me about 30% relief from rsd pain...I would do it all over again if I had to. My best advice would be to find out what company your dr uses and ask to have a representative contact you. I have rsd in my hands so I can't type for long. There are several out there. Each had it's pro's and con's. Be well informed. Ask about medical supplies you will need..you will probably go home with a kit containing some of the supplies you need..if any..As time goes on you will have to get these either through your insurance co or on your own. through the company that provided the stimulator system. PLEASE..be well informed...this is an important decision... let me know if you have any ????'s  I'll be sure to check in again on Friday....take care all

[designgyrl]

Hi, I'm in your same position.  My doctor just started to talk to me about the spinal stimulator, and like you, I'm on board with it, to at least try.  My psychiatrist is saying he has no problem writing the letter for me, so I  guess we will see what will happen.  Will you please keep me informed of how it's working for you, because I've heard split things about it, some people say it works ok, and then some people say it doesn't work very well.  Welcome to the forum.

[Tuckamore]

I often think the same as mummy. The ppl that have great results with the SCS "are probably out their living their lives."

We are the Pain Mangement Forum and ppl with pain often find us...and ppl without pain have no need to seek us out. So I am sure that there are ppl that have the same types of procedures that you see on our forum that have no significant difficulties.  Indeed I personal know some of those ppl.

We'll look forward to hearing from you again soon.

~Tuck

[Baileygirl23]

RSD and SCS

Sorry hit the send to soon LOL, I'm still trying to get used to this.  

As I stated my doctor thinks it will work, but probably will still have to take meds, just maybe not as often or the high dosage.  I'm in such pain, I'm willing to try anything, they could tell me to jump of a bridge and I probably would if I though it would work LOL, (no really just kidding).  I think I'm going to try to do the trial if I happen to pass all the little tests (like seeing the neuro first), I already spoke with doctor regarding if I'm mentally ready and I passed that test, she thought I was ready for this, so I'm going for it.  The trial does last for 7-10 days and if it works then they will permently implant it (plz keep your fingers, toes and anything else crossed for me LOL).  This will probably be done the end of July, and I will for sure post to let you and others who have replied to me up to date.  I also have scarring issues as well and that's part of problem for my two failed total knee replacements on my rt knee, this was my 14th surgery on that knee, so it's really been through a lot and this is WHY I have the RSD in the first place, you know, fix one problem and create another, OH WELL, what ya gonna do???  I just won't settle for "your just going to have to live with it" comment.....
Thanks again for the email........

[mummy3too]

Hi there. At my last Dr's appointment, my doctor also mentioned the spinal stimulator. However, he did not make it sound like it was going to be the solution for me... he told me that I would probably have to have it removed after about four years because of my scarring problems.

I also searched online for information about it - I found that the comments were pretty much spilt and each person's body reacts differently. I also thought to myself that it's possible that if people were completely happy with the stimulator, they were not posting online to comment or complain - they were out living their lives.

Maybe it is worth doing the trial? It will not take very long for you to know if this would work for you. I believe it takes about a week to ten days.... (I could be way off but that's what I remember from online information)

Please let us know if you try it and if it DOES work for you!

[RunningMom]

I'm sorry, but I have no experience with the SCS.  My old pain doctor was pushing this on me and he was refusing to find out what was causing my pain.  He even was trying to push this before my spinal fusion when I had spinal cord compression on my neck with muscle weakness.  This is the only procedure I have refused in all of the treatments offered.  I was told by two surgeons and one doctor that in my condition there is only a 50-70% chance of a 50% pain reduction.  For my insurance, I would have to pay 20% out of pocket just for the trial.  I can not afford to try something like this for a 50% chance of a 50% pain reduction.  My luck it will make the pain worse.  Also, I can not stand the tens unit and that buzzing.  It drives me absolutely crazy.

This treatment might work for you.  I have heard of so many people that are very happy with the SCS and it takes just about all of their pain away.  I do know the SCS is suppose to be used as a last resort treatement.  I have a few surgeries before I head down the road of a SCS.  

Good luck and let us know how the trial works out for you.

[Baileygirl23]

Thank-you, Thank-you for your support, that means a lot!!!  We have just moved to the Austin area and I left behind all of my friends and my only family left is my sister who also lives out of town, so there went my total support group!!!! I realllly, realllly miss my best friends as they were my greatest supporters.

Also, thanks for the links, I'll be sure to check them all out and will keep in touch w/this forum, I already like it and was shocked to get a reply from someone so FAST.

Thanks again
Baileygirl23

[Tuckamore]

Hi Again Bailey,

I did some searching as promised. Not all these post may contain the answers you are seeking for but hopefully it will give you more information. It may also connect you to others that have personal experience with the SCS.

Here are some links to a few past discussions on MedHelp related to the SCS:

http://www.medhelp.org/posts/Pain-Management/sinal-cord-stimulator/show/973835

http://www.medhelp.org/posts/Pain-Management/New-Pain-in-my-left-knee/show/727953

http://www.medhelp.org/posts/Pain-Management/Safety-of-Spinal-stimulators/show/922133

http://www.medhelp.org/posts/Pain-Management/SCS-Removal/show/982294

http://www.medhelp.org/posts/Pain-Management/Spinal-Cord-Stimulator-experience/show/736878

Best of luck to you. I hope you will keep in touch and let us know how you are doing. We all learn from one another. We are here for you rather you are seeking answers, support or just need to vent. We are very good at just listening....and sometimes I find that good listeners are all I need to make me feel better. :)

You'll be in my thoughts and prayers.

Peace,
~Tuck

[Tuckamore]

Hello Baileygirl,

Welcome to the Pain Mangement Forum. You have come to the right place if you are looking for support and information. Neither I nor any of our members are physicians or experts. But we have a lot of personal experience between us and some of us have a medical background...but no experts here. We can relate to the tough challenges and disruptions that chronic pain brings to our daily lives. We are often faced with difficult decisions such as the one that you are now facing.

It's horrid when oral opiates no longer manage our chronic pain and our choices are limited. My heart goes out to you.

I do not have personal experience with the SCS. I know that we have had several discussions on the subject. I have heard many pros and cons. I will search our archives and see if I can provide you with a few links to previous discussions on this subject.

The trial will provide you with useful information, how well it will control your pain and so forth. You are doing the right thing, educate yourself. Do lots of research on the benefits and risks so you may make an informed decision. Ask lots of questions. Make certain that the practitioner is very experienced in the procedure. You will want someone that has preformed this implant hundreds of times and not 20 or 30 times. Know his/her success rate. Check his background. This is your spine, you only have one and you must look after it. Be assertive.

I would be frightened also. You wouldn't be normal if you weren't. Fear is healthy as long as it does not disable us. I am just so very sorry that you have to make these tough choices.  

Let me check our archives and see what I can locate. Hopefully while I am doing that one of our members will post with additional suggestions or some personal information to share with you.

Take Care,
~Tuck