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Spinal Cord Stimulator
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barbmpls posted:
I have spinal fusion (2003) s5-L1, many epidural shots, radiofrequency nerve ablations and now two failed implants of the SCS (leads migrated). I am now being asked to get the SCS implant with the paddle (which is much, much more extensive surgery and recovery time). I do well on 3 oxycodone/day, plus Neurontin (max of 1600mg x 3 per day), Nabumetone, Cymbalta, etc. Right now my pain is worse than before I had the implant with the leads (x2) with bad back pain and now thoracic pain as well. I'm doing pool therapy and am going to go through a "living with pain" program, all at the pain management clinic's request. How do I tell them that I would rather they take out the SCS and let me continue on the medication? I'm not even sure they will do that for me. Anyone have any advice?
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bellasanut responded:
I really don't have an answer for you, but a question. I have had a morphine pain pump implanted in my stomach for over 4 yrs for a failed back surgery. I have been having terrible pain in both my legs since my last fill. You mentioned that your leads migrated. How did you know they migrated? I think that they either mixed the wrong drugs or the leads aren't attached to the nerve anymore. I did the trial for the SCS, but it made my pain worse. The morphine pump has been a lifesaver up until the last month. Any information you could give me would be great!
 
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Geradine4733 responded:
This is your body, Barb. If you want the SCS out, they can not refuse to remove it. If the SCS is not helping you that is a reason to take it out.

You must be your own advocate. If you do not feel you can face them to talk to them about this, have a friend or relative go along with you for support. Make sure your support person is well informed and agrees with you.
 
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1tonka replied to Geradine4733's response:
Barb,I want to know more about this? I am scheduled to have the thrial SCS Medtronics unit mfg. from St. Judes put in my thoracic area this coming Wed. 08/03/2010. I am very reserved about having this done. My situation is a novel with 5 blown thoracic disc.
Thanks Bill
 
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barbmpls replied to 1tonka's response:
1tonka - sounds like you might be in my area . . . Anyway, the trial I had was for leg pain and low back pain. The trial went fine, but the two times they have gone in to implant the leads, at least one of the leads migrated and I don't get the coverage that I got during the trial procedure. The trial really isn't too bad. They don't have the cut you open, it's more like an epidural shot. They do put you into la la land for the procedure. It is kind of gross having the equipment sticking out of your back for a week, but all in all not bad. Now they want to cut out a chunk of bone in my thoracic area and slide in more of a "paddle". This takes a lot more recovery time and they still don't know if it will work. I never had pain in the thoracic area before and now it is ever present. I'm going into my pain doctor on Tuesday to see if they'll take it out. I want to get back to at least where I was before all of this took place.
 
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barbmpls replied to barbmpls's response:
I just had my spinal cord stimulator removed. When I had the trial implant (12/09), everything seem to be fine. It really helped my sciatic nerve pain which I had had since a fusion in 2003. I had the permanent implant on 2/2/10 and one of the leads migrated within 2 weeks. Was in pain until on 4/27/10 they fixed the lead (at which time they needed to reimplant the generator too). In any case, while the scs did help with the sciatic nerve pain that I'd had in my right leg for years, I was now getting sciatic nerve pain in my left leg, my lower back and even my thoracic area (in which I'd never had pain before). It would always seem like I was pulling on something in the thoracic area. Always! I went to see a neurosurgeon that thought that I could have the "paddle" implant instead of the "lead" implant, but he was not certain about pain relief and he told me it would be at least 8 weeks at home because it is a much more drastic surgery. He said that some people always have the thoracic pain with the scs. Well . . . I decided against the more drastic "paddle" surgery and had the scs "explanted" 10 days ago. While I still have the sciatic nerve pain in the right leg, the sciatic nerve paind in the left leg is gone and I can actually stretch above my head. The thoracic and lower back pain are finally gone! While my experience may be different, I don't think it is that uncommon. I'm going to start pool therapy, behavioral therapy and physical therapy (AGAIN) and I'm hoping it works this time. If anyone has had my experience, I would love to know it! Thanks, Barb
 
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CTBeth responded:
I have a ANS spinal cord stimulator. The insertion surgery (paddle) was not difficult. I had it done with general anaesthesia and awoke with very little discomfort.

If you want the scs removed, you tell your MD. You asked "how do I tell them..." That is the easy art: You just tell your MD.

If you want it removed, you have it removed.

Good luck.
 
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CTBeth replied to 1tonka's response:
Bill,

Did your doctor explain the trial to you?

What are your reservations?

I have a spinal cord stimulator and would like to help you. My experience has been very positive.

My implantation is at T6-7.

I'll look online later to see if you've written.

Try not to worry. This may be the beginning of something very good.

Beth
 
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CTBeth replied to barbmpls's response:
the "chunk" they cut out is a very, very small laminectomy.

The recovery for having a scs inserted was very easy for me. The thoracic area is sore for a week or two. I had some bruising at the battery insertion site.

All in all, it was an easy surgery and a quick recovery. It has been so worth it, too.
 
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CTBeth replied to barbmpls's response:
Oh Barbara,

I read your earlier post and did n't see that you had updated today.

Good luck. I'm glad that you made the decision that is right for you.

Take care,

Beth


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