2nd scs trial, not worked, again.

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robochick

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Hi all,
I hope somebody can give me a little bit of hope?? Please??
In sept 08 I had a trial of the scs with one electrode but the electrode was placed in the wrong place so 2 weeks after having the trial I had it removed, then on monday 27th april 09 I had another trial done, my pain management doctor said he wanted to place 2 electrodes on my spine, but he couldn't place the 2nd electrode (I don't know why he couldn't get it in?) the other electrode is in the wrong place and is stimulating my chest area instead of my back.
I've to go back next tuesday to discuss with the nurses what I want to do now and what are my options, but I'm scared that this is my 2nd trial and I'm scared that the pain management doctors are going to give up on me and I'll be left in this much pain, I've suffered from chronic back pain for nearly 11 years, since I was 18 years old and I really have had enough, and I want my life back.
My pain pain management doctor says there is no other pain medicine that I can try because I've tried them all, and injections, and physio, that is why it was suggested that I have the scs trial, but if he can't get the electrodes in the right place after the 2nd attempt I'm really worried about what my options are, will they take it out and give up on me completely or will they take me back into surgery to move the electrodes, when I was in theatre on monday he did say that if he couldn't get the electrodes in the right place that he could get a neurosurgeon to do it, but its already taken me 13 months to get the scs funding and am really worried about how long it will take to get a referral to see a neurosurgeon, as I already feel that my life is at a stand still, having already waited 13 months to get this far. Will a neurosurgeon be able to do it if my pain management surgeon has already tried 2 times. I've to go back next tue but that seems so far away and my head is wizzing with thoughts of them giving up on me, so if anybody has any advice or have been in any simular situations, please let me know, as it would be greatly appreciated, thanx for reading:dizzy::confused::confused:
 
I am so sorry this didn't work for you. I am considering a SCS in the very near future. I spoke to my frienRAB husband who works for Medtronics. He is right there in the Operating Room and programs the device. He was very candid about the device and answered all of my questions. My doctors actually use another company, but he said they all work just about the same.

He told me that you should ALWAYS have the implant done by a Neurosurgeon. Most Pain doctors will do the trial and that's ok (although, he personally would have the Neuro do the trial), but the permanent one should not be done by a Pain Doctor. They just dont have the same training on the spine as the neurosurgeon. He also said you should have a nuerosurgeon who does these ALL the time. In my doctors practice, there are about 4 neurosurgoens, but only ONE does the SCS implant.

He then told me if you dont have good pain control from the trial, then you probably won't with the permanent one. He said some reps or doctors will try and talk you into the permanent one, saying they can get better placement. In your situation, I am not sure on this one. Since the pain doctor had such troubles (2x) it might be worth giving it a third try with a qualified Neurosurgeon.

Best of luck to you. i can tell how disappointed you are. I just had an epidural injection today and if the relief doesn't last for more than a couple months, I am off to try the SCS myself.

10sox
 
Hello again 10sox,

How did the epidural injections go? Have you had any pain releif from them?

Thank you for your advice on your last post, its really made me think about this & the cost involved, I'm on my 2nd trial now, so thats 3 times I've been in the operating theatre & I've still got another operation to go depending on what the pain doctor wants to do with the electrode thats in the wrong place & its still not working, if I had it done my a neurosurgeon then he would proberbly have got it right the 1st time, like you said, they have better training & knowledge about the spine & nerve side of things, so wouldn't it be better for the patient (less stress & post operation pain) & be more cost effective to get the neurosurgeon to do them???

I've been thinking about what you said & I've come up with 4 possible outcomes on Tuesday when I go to see my pain doctor to discuss my options with this electrode I got in at the moment:-

1, Pain doctor to rep-position the electrode that I got in already
2, Pain doctor to take the electrode/wire out & give up then go on for the rest of my life in chronic pain
3, Pain doctor to take the electrode out on 11th May & then refer me to see a neurosurgeon
4, Keep the electrode in a get the neurosurgeon to re-position the electrode
on 11th May

I know which one I would rather he say but with the luck or lack of luck that I have, my pain doctor will take it out & have to wait another 6 months to get an appointment with a neurosurgeon.
I'm dreading going on Tuesday, it broke my heart when they took the last wrongly placed electrode out & it took my about 2/3 months to get my depression over it. For the past 5 months I've been having dreams about my happy/exstatic reaction when I'm on the operating table & they turn the scs on for the 1st time & its in the right place & it covers all of my pain, but then I wake up in a hot sweat, but its a nice dream until I wake up.

Any more advice would be much appreciated & I really hope your epidural's have worked for you, take care xxx
 
Hi again,

I've been back to see my pain management doctor again today to disuss my options after my 2nd scs trial failed. I'm going back into theatre on mon 11 may, but he hasn't told me what he's going to do yet, he said he will either, try to re-position the electrode himself or he'll just take it out & refer me to neurosurgeon, who instead of using the electrode leaRAB which I have in at the moment, the neurosurgeon will use paddles called '565'. Which sound fantastic & i'm goin to try to look on the internet to find out some more information about the paddles.

Has anybody had the paddles instread of lead electrodes & also has anybody had it done by a neurosurgeon, the pain clinc nurse says its a much bigger operation when the neurosurgeon does it & that I'll have to stay in hospital for this one for around 3 days, so could anybody tell me why its a bigger operation this time, would the recovery period be the same as the 2 I've already had done my pain management doctor. Any advice or tips would be much appreciated.
Hope everybody isn't in too much pain today, take care everybody xx
 
Hi again,

I've been back to see my pain management doctor again today to disuss my options after my 2nd scs trial failed. I'm going back into theatre on mon 11 may, but he hasn't told me what he's going to do yet, he said he will either, try to re-position the electrode himself or he'll just take it out & refer me to neurosurgeon, who instead of using the electrode leaRAB which I have in at the moment (and aren't working), the neurosurgeon will use paddles called '565'. Which sound fantastic & i'm goin to try to look on the internet to find out some more information about the paddles.

Has anybody had the paddles instread of lead electrodes & also has anybody had it done by a neurosurgeon, the pain clinc nurse says its a much bigger operation when the neurosurgeon does it & that I'll have to stay in hospital for this one for around 3 days, so could anybody tell me why its a bigger operation this time, would the recovery period be the same as the 2 I've already had done my pain management doctor. Do you have any information on the paddles & the way that the neurosurgeon does the operation in comparison to the way that the pain management doctors do it?
Any advice or tips would be much appreciated.
Hope everybody isn't in too much pain today, take care everybody xx
 
Hey Robochick-
I've been away from my computer for a bit, so I just saw this now. I actually just had a second epidural injection this past Thursday. The first one did reduce my pain, but unfortunately not for long. I am down some of my pain meRAB, but I know it will only be time before this one wears off too. I have an apt with my pain doctor in a couple weeks and I am going to ask for the SCS trial. I will go ahead and let him do the trial, but then the neurosurgeon will place the permanent one.

I really feel for you. I cannot believe how much trouble you are having with that implant. You have lots of patience. I am not sure what other options you actually have, but I would be running full speed to another doctor. I just don't get the warm and fuzzies with this guy. I do wish you the best of luck and please let me know how it turns out.

10sox
 
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