Wheres the best pain clinic for internal spinal cord stimulator?

I have been all over the country going to pain clinics and neuro surgeons. I have syringomyelia which has caused lots of pain down my left leg and round the left side of my chest. I have been to top hospitals in Liverpool, Preston and London.

Ideally I would want to go to a hospital in the north but I am willing to go all over the UK Scotland, Wales anywhere. I just want the best and people who will listen to what I say and not just say "We think you should go to you local pain clinic and see what they say" or "Yes we can see that you need someone to help you but we feel that we are unable to at this hospital." I'm getting fed-up of being fobbed off.

I am on a lot of pain killers and and they are effecting my day to day living. My head is constantly spinning and I am un-able to concentrate on things for to long, my memory is also shot. Thats why I am after an internal spinal cord stimulator. So I can get off all my meds and maybe back to a life that resembles a life!

Any help and suggestions for the Dr or Clinic would be much appreciated.

Thanks

8 Replies

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  • I understand Kingston Pain Clinic offer an Alexander Teacher as part of their regime.

    The Alexander Technique is a method which will help you understand and likelely reduce the experience of pain.

    Pain can have many causes not just the original location of weakness. Feedback mechanisms in the body responding to an area of defect can cause intense pain. By breaking and having greater control of feedback loops by having increased body sensitivity to the things that create the pain can be helpful in reducing it.

    My experience of feedback from others is that pain clinics and neuro surgeons do not have much idea of the causes of pain. They treat symptoms.

    Alexander Technique helps you look at some of the causes and then gives you the mechanism to do something about it.

    I have looked up syringomyelia on wikipedia.

  • there are many good centres in the UK, The Walton Centre, Leeds Teaching Hospital, Sheffield General and James Cook Middlesborough are the main North Spinal Cord Stimulator sites. I have recently seen a daily mail article and heard lots of good things about a senza system made by Nevro. Apparently its the only stimulator that doesnt buzz of shock you and you can drive and sleep with it on. I'm looking into this. . . .

  • I've been referred to Chelsea and Westminster for spinal cord stim.

    Like you, I had hoped it would be an end to years of pain, opiate meds doing my head in etc.

    My assessment for the programme made it clear it wasn't a magic bullet.

    They reckoned that only about 30% of those who are trialled actually benefit and go onto the full implant. Also, funding. For the stim itself is very difficult to get.

  • I'm on a trial at Heatherwood in ascot.

  • HI CAN YOU TELL ME WHATS A SPINE STIMULATER,?? IS IT A PAIN RELIEF ? AS I HAVE SEVERE PAIN DUE TO ALOT OF ILLNESESS.

  • To put it simply. It's an internal TENS machine. The wires with electrodes are in your spine instead of on your skin. Have a look at the Medtronic website. They have lots of good videos. The one I have interferes with pain signals and feels like strong pins and needles. It really is an odd sensation. If you are suitable for the implant you will be given a trial first before the full implant. Also, if your in the UK, have a look at the NICE website. It took me months of research before I was sure I was going ahead with it. Unlike a normal operation you have to have multiple operations over years. So it needs thinking about. It's right for me but not everyone.

    Good luck. If you want to know anything please feel free to contact me.

    J.

  • THANKS, INTERESTING READ, I HAVE A TENS MACHINE DOES HELP FOR SHORT PERIODS ONLY, I HAD TO COME OFF ALL MEDS DUE TO SEVERE PAINS IN STOMACH, SO WORTH INVESTIGATING ,THANKS WILL DO.

  • It works in the same way as a TENS but it's a different sensation and a lot more intense.

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