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

Well, I don't think the surgery was her favorite way to spend an hour,
but it wasn't as hard as the Medtronics surgery. She didn't have any trouble with a spinal headache at all. She is apparenty difficult to get leads into,
and other doctors have had trouble getttng epidurals and such in place, but
this went in quickly and the coverage was good - all the way from her toes to her hip. She was pretty groggy the afternoon after surgery, but by evening
she was better. The next day she was tender, but close to normal - she had
a great time taking in the Titanic Exhibit in San Francisco, even being pushed in a wheelchair 5 miles! (DH, who pushed her, was a bit tired though ;-))

Unfortunately, the stimulation was not good for her - it was too painful, and even when she turned it down to just under where she could feel it, it
didn't take any of the RSD pain away. She's never been able to handle any kind of electrical stim of any kind - even TENS units, that help me a lot, are painful to her, so we suspected it might not work for her, but had to give it a try.

The drive home from the doctor yesterday was uncomfortable (8 and a half hours), and her back does ache today, though not terribly so - she can move around, sit in a chair, do her normal things.

Thanks for your good wishes, and we'll pray for your surgery - let us know how you do with it! The next step for her is a pain pump. I hope it works!

AJSG mom

Hi Beth...I just had the Advanced Bionics SCS put in this past May. My previous SCS was made by ANS-medical. I had good results with ANS-medical but had to have an external one because I had no body fat for a internal one. This past May I was able to have the Advanced Bionics put in (internal) because of its size, it is very small. I love this SCS, my device is located in my upper hip where I have the most fat. The rep's are wonderful as the company. The coverage area is greater then my previous one. I charge my battery once a week with a little device that goes right on the implant and it takes about 2-4 hours.

Since this is your first time or trial I can't tell you how you will feel, everyone is different. I believe as I post your probably having the procedure done. Please do let us know how you are doing when you are able okay?

Everyone is different with the SCS, some like it others don't. I believe this is a personal choice. Currently I believe there are three companies out there who make the SCS. It would be very interesting if someone could do a study on the SCS as to which company was used to success or failure though. I don't think this has ever been done but I do believe it would be a very interesting study.

I Hope everything goes well for you. You will be in my prayers. Jewells

So far so good! Had a few "technical difficulties, like the absent anesthetist who was scheduled for back-to-back cases - first case started 45 mins late and ran into a lot of unforeseen difficulty, then I was given the "go" signal, taken to the OR, on the table and everyone ready to go, but no anesthetist We got underway almost 2 hours late, I spent the delay sitting in a wheelchair chatting with the OR nurse; I was NOT leaving that room til the procedure was done!

Dr had a hard time getting the leads in - no room to get in to the midline like he wanted (there's no sensation there, so no pain after), and he had to go in higher than usual to get good coverage, so if/when I get the permanent implant, the scar will be visible if I wear a boatline or other low-neck top. Just one more to add to my collection I said

But we did get complete coverage from fingertips to shouldertops, plus underarms and some scap relief, so I am thrilled! And it seems to be masking the pain like it's designed to do, I went to the first half of a football game tonight, wore gloves naturally, but my hands did not get painful and turn icy cold even though it got quite chilly sitting there. I'm impressed!

Worst part is painful neck due to having to hang it over the edge of the operating table to make it easier for Dr to get in between the vertebrae. I have chronic triggerpoints in the neck due to TOS, so the neck is screaming, and there's pain from the incision for the leads since he couldn't insert them right in the midline, had to go in from the side. 3 extra-strength Tylenol didn't do a thing, so I'm hoping Valium will cut me some slack

But the pain from the procedure should be gone in a day or two, and if the SCS continues to work for me through the weekend like it is now, I think I can call it a success I get the trial out on Monday, from then I wd only have to wait abt 2 1/2 weeks til surgery for the permanent implant.

Thanks for the prayers, please keep them coming! Jewells, I'm impressed with this unit too, it seems to have a lot of advantages over the Medtronics system, I'm not familiar with the ANS. My husband is really wowed at how sophisticated this technology is though, and he's not easily impressed. I just like the fact that my Dr is so happy with it, he does lots of SCS implants and has nothing but good things to say about the Advanced Bionics stimulator. It's always great to hear positive experiences from someone who's actually had a procedure versus the Dr's viewpoint though!

AJSG mom, I wish the SCS had been the answer for your daughter, so her journey could have ended, but I have also read that if the TENS didn't work the SCS probably won't Will pray for you both that the pain pump IS the answer, and the wait for that is short.

The Bionic Woman

Beth: I am really glad to hear that the SCS unit is working well for you. Isn't it wonderful to be able to go out and do something instead of staying home from fear of pain? You go girl!!! Regards, Lil