High frequency/burst spinal cord stimulation: long term effects

I am only one year in on my first SCS, a St. Jude/Abbott and I have been getting these full body very irritating hot/tingling/itching floods that last for up to 20 minutes.  They are sort of like a cross between an allergic reaction to something on your skin and a menopausal hot flash, my heart races during them too.  They do seem to respond to benadryl which would indicate an allergy, or maybe they run out at the same time the benadryl starts acting LOL....  It's a highly annoying sensation, makes you want to crawl out of your body.  I never had that before having an SCS.  At first I thought it was due to all the tape they put on me ( I am allergic to tape), but it continued after the tape came off.

I was also told I was running it too high, my non-rechargeable 5 year battery lasted 7 months... that shouldn't happen.  I had it switched out with a rechargeable and I am doing much better with that.  I find it hard to believe I am that far off the norm.

I am so sorry you have had those problems. It seems like you replace one lot of issues with another lot doesn’t it. 

I have had my St Jude implant since April 2017. I had an accident at  work in 2006 and fractured my lower left leg. Things went pear shaped and after 6 surgeries was left with pain that the Orthopaedic Specialist could not explain and basically he washed his hands of me. I was in the “too hard basket” ........ that was 4 years ago. I just got on with it, well actually  no, I didn’t get on with it because I was still on morphine.  Then 18 months ago I saw another Specialist and he was brilliant. He said he knew what was wrong after reading  my endless pile of medical reports.... Nerve damage caused by all the surgery.  Lovely.  He referred me to a pain clinic where I saw Professor Raj Sundaraj.   He agreed with the nerve damage diagnosis and started me on Lyrica. That’s what they are called here in Australia.   I had a really bad reaction to them and that’s when he discussed the Neurostimulator with me.  I had a trial which was great so went ahead with the permanent one.  

 It was fine (I have mine on all the time !) apparently St Jude is now Abbott. It was brilliant to be able to get off morphine after 6 years let me tell you!

Anyway, it was placed just slightly above my waist which became ridiculous because it hurt to bend.

The Professor agreed to move it but as I don’t have much fat to play with it’s really only been moved up and over about an inch. That was on November 16, 2017 and that’s when the trouble started. To begin with, the bottom corner of the device, (which I call

ET )  sticks right out and I catch it on things.  It’s really red there as well. About 4 weeks ago I started getting lower back pain, where the leads are folded over and stitched in .  It feels like kidney pain and that whole area is really itchy and burns.  I found it strange because I didn’t have that that problem the first time and that area was not touched when “ET” was moved. 

I went back to see him and when Ibexplained my symptoms he said “I know exactly what’s causing that pain. It’s “Post Operative Neuropathy” and can happen several months after surgery. It’s caused by nerves having to be severed during surgery and when they grow back there can sometimes be a problem because they cannot get through the scar tissue”.   He put a lignocaine patch on the area to see if it helped. It didn’t. He was leaving that afternoon to go to an overseas conference so I cannot see him until 21st Feb....... in the meantime I had to see my GP as the pain was so severe.  

I am back on morphine and GABAPENTIN.   Not impressed. I have traded one problem for exactly the same one but in a different place. 

Don’t know what will happen when I see him but I could just cry. 

I know this has been a long one but I needed to explain the situation properly. 

Has anyone else had anything like this? 

I gave just re-read your post. I have my “ET” (my nick name for the little chap) on constantly. I re-charge it about once a week. My daughter calls me a Cyborgs!!  Wow you really are having problems.  What has your rep or Specialist said about those new symptoms? Did they tell you that they had  no relation to the implant? too much of a coincidence for my liking. Don’t let them fob you off Christy, and if they try to, make sure you speak to somebody at the top. Seriously, that’s the last thing the reps want. Keep on to it kiddo. Don’t know about in America, but the Op is A$40,000 over here in Oz, so they need positive feedback.  I am at that stage in my life now where I will stand up for myself and I have learned that the medical profession is not perfect. Just like the rest of us they can make mistakes and also have bad days. I am never rude to them and always “Go in armed”with as much knowledge as possible.    If I had never gone for a second opinion on my leg pain 18 months ago I would never have known it was nerve pain.  You go for it girl. SOMEBODY owes you an explanation.  Explain it to your GP too and see what he/she says.  There HAS to be a cause of all that stuff Christy.  

Nobody told me not to have “ET” on all the time Christy, I better check. 

Problem is, they tell you sooooooo much immediately after the surgery that you soon forget. I had to ask the Rep to leave my room, as she presented herself immediately after Unwas wheeled back from recovery ! How on earth are you meant to remember what day it is, let alone anything technical

To be honest with you, I think Drs respect you more for being informed.  

Please let us all know what’s happening ok?    

We can all help each other. I have learned quite a bit from you all on this site. Each one of us will have different scenarios.  What affects one of us may not affect another, so it’s terrific to be able to compare. 

Please take care ok. Xxx