Hi everyone,

I dropped in occasionally at OBT from the TOS forum. I have bilateral TOS and RSD/CRPS type II with central sensitization. I had the ketamine treatment in-hospital with Dr Schwartzman a year ago, followed by boosters through May. It was a good experience, with about 40-50% relief, but this wore off mostly by March/April and completely by July. My insurance co. also declined to pay for any of it, although they didn't make that decision til well after the fact. I'm aware of the coma treatment but it's not for me.

Since my pain levels are high, and I live in a community that does a poor job when it comes to RXing opiod pain meds for chronic pain, I have decided to try an SCS for pain relief. I will go in on the 29th for the trial implant, and will have the leads in for three days to see if it will work for me, giving better than 50% pain relief in both hands, arms and underarms. If it does, I will have a permanent unit implanted.

This unit is not from MedTronic, I want to say it's something like Boston Scientific? Anyway, it's really small, just a bit bigger than a matchbook, and is rechargeable, with a 9-10 year battery life expectancy. You recharge the battery once a week for 30 minutes, like a cell phone. (The implant is placed in the butt, and to recharge you sit on this blue cushion!)

I was wondering, if anyone has had an SCS surgery, can you tell me anything about it? Pain-wise? Recovery tips? I know you can't bend or turn, lift, etc, til the leads are scarred down, but how hard will that be while taking care of 2 kids? (They're older now, thank goodness - 11 and 15) Any advice or info the Drs don't tell you wd be appreciated!

beth

Hi Beth,

and welcome, sorry to hear about your situation - I've not had that experience myself, but I remember that Mark (a tallone) has.

We're still waiting for the rest of our forum to catch on and catch up - we miss them so!

Actually, there are people in other forums. like Chronic Pain, Peripheral Neuropathy etc, who may well be worth asking too. I'll see what I can dig up anyway; and you could google it, something like "Braintalk RSD SCS" and then click on the *cached* link, it's surprising how much info is still out there...hope we haven't lost it all!

Anyway, you take care and as I said, welcome!
all the best.

Sorry to hear of your current mess. I can so relate. Back in May 2004 I had the SCS surgery. Battery in the hip with wires running up to the neck. Worked great and on the 5th day I was leaving the pain clinic. I hailed a cab and wouldn't you know it the cab was in a accident and my implant got ripped out. Back into the hospital I went. Had the surgery all over again and I have never had any luck with it since. It has never worked. Had to have it removed. Not sure why it malfunctioned. I hear folks say it is the best thing that ever happened to them and others say it it a nightmare. I suggest you do your homework and see how the trial implant goes. I wish you the very best of luck. Chin Up!

Mark

Thanks for the replies. I checked Chronic Pain but no one's home there yet.
Really strange how some forums are up and running and others are empty, guess it's a matter of which forums had members who had other members' email addresses. Wish there was a better way of letting people know this site is here!

I have done some checking for cached pages as well, and looked around other sites, and know the SCS doesn't work out for everyone, but have to hope I will be one of the success stories. My Dr has had very good luck with this unit. And I'm running out of options, you know?

Mark, that is a terrible thing to have happen to you when the SCS was working so well! I'm sorry they weren't able to make it work for you again following the second surgery - that must have been really frustrating and upsetting! My dh will be my designated driver, and you can be sure I will be making him drive v-e-r-y carefully!

Appreciate the good wishes!

beth

My adult daughter just had a SCS put in today, for a trial. She had a Medtronics one that didn't work at all for her, but this brand (Advanced Bionics) is supposed to be way better, more advanced system and all. At the moment, she isn't getting much relief, but it is in the right place and covering her from toe to hip, which is already better than the Medtronics one - it never covered the right area. She is still groggy, but tomorrow they'll work with the different settings and see if it will help. So far the stim just feels painful, so they do need to work with the settings some more. I hope, hope, hope it works for her! And for you too.

AJ mom

Hi, that is the same SCS I will be getting tomorrow, Boston Scientific owns Advanced Bionics. What was the actual surgical experience like for her? I am a bit apprehensive about the leads being poked around in my "processing center" as they try to find the right coverage

However, I am praying like mad this will work, it is practically my last resort, you know? Not something you undertake lightly, or could have ever imagined yourself doing (or even knew existed!) in earlier days.

I It is good to hear they got the areas covered that they wanted, sure hope they can do the same for me! With the thoracic outlet syndrome AND nerve damage along with RSD, my Dr says I am pretty complex, he hopes he can get good coverage but won't know til he gets in there and tries. I'm trying to stay positive and BELIEVE this will work!! It just has to!

Best wishes to your daughter, hope she has great relief tomorrow. Is her spine painful at all where they inserted the leads? I am having both arms done - 2 leads. Pray I avoid a spinal headache, I'd really like to go to my daughter's homecoming football game tomorrow night with the family. The team is undefeated, we haven't been to a game yet, so it would be fun to get out and do something for a change, and let her "hang" with her friends


((hugs))
beth