[pat_h]

Hi there, I am a new member and am in need of advise and help. I have crps in both legs for thirteen years now and have gone through all the meds and procedures. I received my first scs nine years ago and had no problems with it. Two and a half years ago the electrode broke and had to be replaced. There has been several battery changes along the way as well.

In the past eight months I've been experiencing problems with radiating up the spinal column and into my head. Re programing seemed to do the trick initially, now every sequence of electrodes has been tried and pulse widths as well. With each electrode being turned on and off changed the location of coverage to my head. In the past three weeks stimulation is radiating through my arms and recently into my back.

My question is has anyone heard of this happening when everything checks out with the function and electrode impedance. Am waiting to see the neuro surgeon but his nurse that does the programming researched and asked the Medtronic rep and no one has ever heard of this happening.

[Rrae]

Welcome!

I'm sorry to hear you are faced with this perplexing situation.
I wish I had a good clear answer for you, but I'm scratching my head as well.
I'm glad to know your unit has brought you good relief for these past 9 yrs (I suffer CRPS in both legs also)
The only only thing that comes to mind is the way scar tissue can play dirty tricks on us. I'm wondering if more scar tissue has formed since you had the broken electrode replaced over 2 yrs ago.

Here's a quote from our friend Jackie as she shared what her Dr told her Re: scar tissue:

I told him I thought the 'intensitiy' of the SCS has waned. His explanation of this was that scar tissue encases the leads over time, insulating them, which can lead to a reduced feeling with the stim. This is why we have to be reprogrammed at various times to get 'past' this insulation

If it 'is' scar tissue, it would only take a very small mili-mili-milimeter (wasn't too bright in math ) of movement to cause stimulation to head in another direction. Just a 'theory' I'm pulling from thin air.....
But one would think that since your electrode was replaced that long ago, scar tissue should be done forming and changing. (?)

I hope they will be able to uncover the source of this - soon. It must be maddening to feel the stim up into your head. Please stick around and let us know what happens. It's great to have you here!

Caring,
Rae


PS: Just wondered how long your batteries lasted before you had to change them out. I'm going on year 3 and hoping I still have a few yrs left in the ol' battery.

[pat_h]

Thanks for the reply Rea.
I was also questioning about the amount of scar tissue on the dura. Scar tissue can do some funky things. I try to lead as active life as possible so everything does get bumped and jarred a little.
I was also thinking it might have something to so with at therapy that I'm to increase the bodies efficiency through different movements. This has loosened up my back muscles and increased mobility throughout my chest and spinal column. Maybe that moved the electrode around enough to cause this.

This battery will be 4 years old in August. The good thing about this battery is the it is rechargeable and is supposed to last for another 6 years. As you probably know, the less you use your scs the longer it'll last. When it was working I would have it running 14 hrs or more a day. With a regular battery the best I got was 2.5 years and was told the battery life was 5 years.

Thank you for the reply and the idea. I'll let you know what happens when something happens.

Pat

Originally Posted by Rrae

Welcome!

I'm sorry to hear you are faced with this perplexing situation.
I wish I had a good clear answer for you, but I'm scratching my head as well.
I'm glad to know your unit has brought you good relief for these past 9 yrs (I suffer CRPS in both legs also)
The only only thing that comes to mind is the way scar tissue can play dirty tricks on us. I'm wondering if more scar tissue has formed since you had the broken electrode replaced over 2 yrs ago.

Here's a quote from our friend Jackie as she shared what her Dr told her Re: scar tissue:

I told him I thought the 'intensitiy' of the SCS has waned. His explanation of this was that scar tissue encases the leads over time, insulating them, which can lead to a reduced feeling with the stim. This is why we have to be reprogrammed at various times to get 'past' this insulation

If it 'is' scar tissue, it would only take a very small mili-mili-milimeter (wasn't too bright in math ) of movement to cause stimulation to head in another direction. Just a 'theory' I'm pulling from thin air.....
But one would think that since your electrode was replaced that long ago, scar tissue should be done forming and changing. (?)

I hope they will be able to uncover the source of this - soon. It must be maddening to feel the stim up into your head. Please stick around and let us know what happens. It's great to have you here!

Caring,
Rae


PS: Just wondered how long your batteries lasted before you had to change them out. I'm going on year 3 and hoping I still have a few yrs left in the ol' battery.

[Sophie_]

Hi Pat,

You're very welcome to this corner of the web. We're all good support and you should stick around.
I too have some problems with scar tissue on the S1 nerve root that needs to be removed to free the nerve. I had a Medtronic SCS for less than a year, they removed it so I could have an MRI scan and other tests as the SCS stopped working properly. They plan to put another SCS in after I get this problem sorted. My problem is trying to find a surgeon that will agree to the surgery even if it is that logical I've been unable to find surgeon, one guy even admitted it was because I was second hand work. When I had my first disectomhy 16 years ago he was still in Uni! Doesn't make sense does it huh!

I know when I got the scs in I had some strange sensations underneath my ribs, basically the leads were up too high but once they adjusted the leads it did work better? I imagine what Rae suggested should work and it should be that simple. My SCS was on 24/7 and I really needed it that length of time.

I do remember when I had my first surgery a woman in the ward who had a discectomy too, she was having awful headaches and they discovered the surgeon had knicked something to cause the headaches and once they repaired the cut she was fine again.
Please God you will find a solution but if they do suggest removing the SCS, those headaches sound terrible, there will be another solution it won't be the end of the road for you but of course I hope and pray they find an easy solution for you.

All the best and warm wishes

Sinéad *