I got great coverage of my arms with the trial SCS, and 3 BLESSED nights of sleep. I want this to work so badly - only fellow RSDer's could understand just HOW badly I want some relief!

Here's the snag: For the trial, Dr tried to go in at C8-T1, on the left, to insert a lead (for the right arm). He couldn't get in due to scar tissue or possibly adhesions, he said. So he went up one level and was able to insert leads left and right side fine. But because he had to go up, even though I got great coverage, the electrode placement wasn't the best, and by day 3 I wasn't getting any stimulation at all. When he took out the trial stim, he said it looked like it had barely moved, the problem was contact was being made at the very bottom of the electrode, if it moved much at ALL, I lost everything.

So he is really reluctant to go ahead with that placement, for fear it would quit working before the leads would scar in, no matter how careful I am with restricting movement. He wants to instead try inserting both leads from the right at C8-T1. He says it will be more difficult to get them both from one side, but he's pretty sure he can do it. (He's implanted 130 of these and has 85% or better success rate, so I do have confidence in him, that's not the problem at all.)

Since we discussed this a friend on the TOS board reminded me I'd had EMG ulnar nerve root studies of the C8 across the brachial plexus, a TOS dx study. I've had 3 on the right, explaining the scar matter there - funny how I could forget those But I've also had one done on the LEFT!

I don't know how much scar material one EMG can cause - or if ANY scar matter will make it impossible to insert the leads at that site If that's the case, it seems more likely than not I won't be getting an SCS after all

I could tell the Dr I want to go ahead and try placing the leads in the higher sites if he can't get into the lower one, he's leaving it up to me. But it's a lot of surgery (implanting the leads, making a tunnel down my back to hide the wires and an incision in my upper butt for the battery pack) to go through when the odds are not in my favor.

And I haven't told him yet about the EMGs at C8, that was just brought up yesterday. I REALLY dread calling and telling him!!

And yet, the 2 days and 3 nights that the trial SCS DID work, were SO wonderful!! My arms didn't HURT, or pain was so low it didn't register I slept like a dream, even laid on my "bad" arm and was fine. I woke up relaxed and had energy, felt almost like my "old" self, pre-injury. Couldn't stop smiling!! DH and my kids loved it too. I'd try almost anything for a chance at long-term relief like that, even if it quit after a year or two that would be precious time gained with my husband and growing daughters.

Question: anyone have a clue how much scar matter an EMG can leave behind, and whether it might still be possible to insert the SCS leads anyway?? Xrays won't help, no way to see if or how much scar matter til he goes in there, and I have to let him know soon if I want him to go to the upper sites if he can't get into C8 rt side.

TIA, beth

Hi Beth...sure do understand your disappointment as I have a scs, don't know where I would be without it. I do know when I was going for my first scs my Doctor mentioned that I had a choice in having a neurosurgeon putting in the scs. My Doctor is a PM Doctor but I went with him and everything worked out fine. Perhaps you could discuss this option, having a neurosurgeon doing the surgery. Sounds like your case is complicated and maybe that would be the better way to go? But if you are comfortable with your Doctor.....
Jewells

Jewells,

Complicated is right...I say I'm strange - my Drs say no, I'm special, like that makes it better somehow! Can't believe a test I needed to confirm a dx prior to surgery 2 years ago could prevent a successful SCS surgery now - the irony is killing me.

Thanks for the reply. I will discuss whatever options exist with my Dr this week, wish I knew how much scar matter one nerve root EMG may have laid down and how big of a problem it is to get leads past it.

Guess what I'm really wishing for more than anything is that somehow, someway, the SCS surgery will work for me - it just HAS to.

beth

All I can do is tell you the story of my SCS and hope you can glean some valuable info from it.

One of the most disappointing experiences of my life was the failure of my SCS. I was so hopeful. The trial was great. It knocked down my pain about 40-50 percent. I went ahead with the implantation of the permanent unit. As soon as we turned it on I knew immediately there was a big problem. The coverage went only halfway down my arm. It didn't even reach the elbow where my nerve damge is.

I went on the surgery table three different times while my doctor tried to emplaced the leads correctly. He said the leads "kept rolling on him." He finally gave up. I was pretty well done with the SCS until he recommended having paddle electrode emplaced by a neurosurgeon. I went ahead and agreed. The surgery was horrible, the worst of my life. He did a laminectomy and put in two paddle electrodes. They worked OK for about three - four months, then relief got less and less. Medtonics tried many times to configure the coverage, to no avail.

The unit was removed when they implanted my morphine pump which has been working well now since 2003. I have been doing very well lately and only taking one dilaudid breakthough tab per day.

Love Coleen

Has anybody had a medtronic unit non-rechargeable have a dead battery after only 4 months besides me? Friday I will get a new one, the rechargeable kind. They claim 9 years of battery life. I only have to charge it every week or two.
Debshttp://neurotalk.psychcentral.com/images/smilies/mad.gif

The amount of scar tissue varies widely from person to person. Unfortunately. I have had 3 EMG/nerve conduction tests and my surgeon had no problems placing the leads. The most difficult part was finding the best place for maximal coverage. They were trying to cover both of my feet. It's helped my pain about 70% and I take much less pain meds.
Debs

I don't know where I would be without my SCS either. I probably wouldn't be able to work. I would be housebound with no money. An ugly situation. My surgery was performed by a surgeon from my pain clinic and a neurosurgeon from Neurosurgery. I don't think he is a member of the pain clinic. It worked well except for the defective battery.

The most important thing in implanting the SCS is getting the leads in the correct spot. You need to have somebody do it who has a lot of experience. Those are good indicators for success.
Debs

Ok dumb question but what is an SCS? Sounds interesting

psst...shelley...

spinal cord stimulator

hehehe..i snagged that off of another post. so don;t go thinking this monkey is smart...just resorceful