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Permanent Spinal cord stimulator ...Real Concerns...2-1/2weeks post-op
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STIMULATOR73 posted:
Hi Everyone ! I am a 39 yr. old male who has dealt with chronic back pain for years...After trying all the "conservative" options out there...from physical therapy...to all types of injections and basically every other option I could find or was suggested to me...all of which failed...I decided to try the surgical approach. After seeing neurosurgeons at the 2 top hospitals in my area...I was told that a multi level lumbar fusion
(L4/5/S1)would stabilize my spine...HOWEVER...it was very unlikely it would help to eliminate/reduce my pain that travels from my lower back into both of my legs. The surgeons both suggested a spinal cord stimulator since I was considered to be relatively young to start with fusions...basically guaranteeing that I would need another fusion later on if I proceeded at my age. After doing my research I decided to give it a shot. After having a relatively successful 5day trial of the stimulator and being reassured by both my PM doc and neurosurgeon that the permanent set up would be even better... I agreed to have
the permanent stimulator implanted.

So I am now 2-1/2 weeks post op and have some concerns...First of all...the paddle type leads were used for the permanent install and not the thin little wire leads... (sorry but I cant remember the name)...problem is that I am a skinny guy...lol...I am 5'-11" & 170pnds...these leads are literally sticking out of my back approx. 1/2"-3/4" !!! Every time I try to sit down its a nightmare to try and not lean on these leads...obviously it hurts like a S.O.B. !! My wife keeps telling me they will get smaller as I heal but I am having great difficulties believing her...Also the generator was placed in the top of my butt cheek and when I try to sit it gets "smushed" upward a bit as the bottom of the generator just catches the chair when I sit...Now for the real problem...this damn thing is not working on the leg pain...I actually think it mains the nerve pain worse ! I have already had the unit reprogrammed and it still is not helping...In order to get any relief I have to turn it up so high the "vibration" takes over everything and makes it hard to function because this is all I feel ! As far as controlling my lower back pain...again...I need to turn it up so high it literally restricts my abilities to function. In addition...I can feel the leads "rubbing" across the back of my ribcage which is very "uncomfortable" to say the very least and they can actually be seen when you look at my back ! I am hoping that I will stop getting "zapped" when I move around and that the generator area will also not be buzzing as bad when the unit is on as I continue to heal up.
If anyone has any insight on this it would be greatly appreciated ! I know that its only been 2-1/2 weeks but there has been very little improvement if any with the items I have described...Also if the is any other skinny people out there that has these same issues I would like to hear any suggestions you may have...

Thanks in advance

STIM73
Reply
 
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ctbeth responded:
Hi Stim73,
I have had a SCS since 2007 and I am quite thin.
My battery does stick out more than average, and my surgeon has told me that this is related to my body structure.

The other things, it sounds as if your surgeon really needs to evaluate the placement.

I have the paddle leads.

Best wishes
 
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ctbeth replied to ctbeth's response:
P.S. I forgot to write that my battery is a St Judes Genesis. It's a bit bigger than most batteries as it is not rechargeable.

I neither see nor feel my paddle leads.

I've spoken with many who have SCS and have never heard of this phenomenon.

Naturally the stimulation changes as you heal and the inflammation resolves, but the things you are experiencing just do not sound okay.

I'm fairly certain, by what you wrote, that you did not have the L4-5, L5-S1 fusion. Is this so?

Have you spoken to the neurosurgeon and the company tech?

Has your surgeon seen this?

I seriously think that your MD needs to assess your placement.

Please let me know, ok.
 
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STIMULATOR73 replied to ctbeth's response:
Thanks for your response Beth !

After reading your response I realized I left out some of the important details so here goes...

I have a Boston Scientific Precision Stimulator...it has a lifetime rechargeable battery that should never need to be replaced...(only time will tell)...As far as the battery pack/generator goes, it does not really stick out but I think he goofed up and put it to low in my cheek because when I try to sit I can feel the generator "push upwards" against the incision...(the generator was placed entirely below the incision in my cheek).

You are correct...I chose not to have the fusion at this point...I have 3 immediate family members who have all been "fused up" and unfortunately none of them are really any better than before their surgeries.

At my last post-op visit...both the surgeon and the company tech saw the paddles and they down played the whole thing stating " you just had surgery...your still swollen...they will be fine...dont worry about it "...famous last words ! At this point there is virtually no swelling at the lead site and they still stick out like the lumps on a alligators back !! This lump makes it almost impossible to be able to sit down and relax... I see the surgeon again on Thursday and plan to press the issue with him and see what he says because I can not see this being correct and apparently you tend to agree as well (?).

I look forward to hearing from you and I will let you know what happens after my appointment on Thursday.

Thanks again!
 
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tuloud54 replied to STIMULATOR73's response:
I had a pain pump in Nov/2012 and I am still tender. Also slim 5/8 145lbs. Best bet would be patience. Do you have other meds which will buy you more healing time? Your Dr has the answers and I would trust that you may need more time. Try and hang tight and trust you will feel better.Just no today.Wish I had a magic wand to ease your pain but time may be your best bet. All the luck to you
 
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ctbeth replied to STIMULATOR73's response:
Hello Mr Stimulator73,

My battery is placed in the same manner as yours.

Again, I do not have any sensation in that area, but, if I did, I could see where it could cause discomfort. It is really close to the surface, too.

As a woman, I have more clothing options for comfort regarding the battery. Although I do not feel the battery, any irritation, especially in the areas where I lack sensation, can cause other neurological sequalae. No need to elaborate on this.

I also wear a brace for a period daily. Due to the battery and the brace, I am more comfortable in flowy dresses. I wear a camisole or "wife beater", then the brace, then my day clothes over the brace.

I do not like to wear the brace so it can be seen, although I know that many people do not mind. I just have an issue with the "sick role" and abhor any attention that comes my way related to my disability.

This is one-of the reasons that I do not have a re-chargeable battery. Another is that the techs at St Jude crunched the numbers and with my level of use and settings, I'd have to re-charge every day. This is too "sick role" for me, and probably for most.

Who would want to have to re-charger an implanted battery daily? I'm sure that I'd come to obsess about it, as I am a bit OCD to begin with. Well, perhaps a bit-more than a little, some would say. I wash my hands about 200 times a day and am a germ-o-phobe, Yeah, that brand of freak.


The real problem with us clean freaks and the germ-o-phobic is that we really do not think that it's irrational.


Enough of me: I do so hope that you'll report back after your appt, and perhaps join some other discussions.

Best wishes,

CTB
 
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Onehurtguy responded:
Woah, you see CTB, this is precisely why I wouldn't go for the SCS implant, or any other for that matter....

I'm really sorry to hear that you're going through all this SIM73, to me, it sounds like a nightmare. Just reading certain parts actually made me feel faint, like "feeling the implant catch on your chair".... Ugh! But then agin, I am a HUGE sissy... I can't even look at a needle on TV, let alone seeing/feeling something moving under my skin. I would vomit and faint within seconds!

I wish you the best of luck with your issue, but like others have suggested, you should heal/recover before throwing in the towel.

These things take months before becoming even remotely normal again. Stay positive, stay calm, and communicate with you physician on a mature and neutral level. Don't get it in your mind that he's done wrong by asking us, we can't see you and we're not qualified to diagnose your needs or condition.

If you sincerely feel that you've been done dirty, quietly get a second opinion.

Again, good luck and stay strong!

R
 
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ctbeth replied to STIMULATOR73's response:
Hello Stim73,

How was the appt on Thursday?

I am eager to hear, and hope that you have good news.

CTB
 
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lindagkelly responded:
The leads should NOT be hanging out of your back! Somebody messed up. Your surgeon needs to fix it. I asked to have my "generator" put in an area above my sciatica and pelvis area because I already had so much pain there, I didn't want it anywhere close to where I had pain. They may have to move your "generator" for you. It takes a while for your stimulator adapts to "positional" changes, but it will happen. The doctors make you think that you will feel 100% better the day after you implant is put in, but I found this to be wrong - it actually took 3-4 months. Continue to go back to your therapist and have your stimulator adjusted or "reprogrammed" - it might take a while to get it right.. And as far as your settings, less is more. Don't turn it way up to get it to work. Also, you can ask them to adjust the WAY it vibrates, from a constant vibrate to a pulse. Ask about that. Good luck to you. I have had mine over 2 1/2 years. It helps, but not 100%. Unfortunately, dealing wth chronic pain may take several approaches. If you have a lot of pain, ask about taking Lyrica or Cymbalta or Elavil. Hope this helps.


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