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spinal cord stimulater

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graham6214
graham6214

hi everyone this is just an  update on my scs it now day 10 and ive started to notice a few problems the scs dosnt seem to work in different positions ie sitting laying down the power seems to drop off and on the other side the power increases when i cough sneez or fart allso higher up my back around t9 to t6 ive stated to get spasmes not sure if the scs is makeing this happen i am seeing my consultant on friay the 5/08/14 will let you know how i get on 

2 likes, 17 replies

17 Replies

  • Mooncrow
    Mooncrow graham6214

    Posted

    Hi. Last June/July I had a 10 day trial with an SCS. I had 80% success and I'm on the waiting list for the 'Complete Beastie', hopefully about March 2015. They're going to fit a 2 lead Boston Scientific with 4 programs, which should cover both legs and lower back.

    I know it's been a while but I hope this might help.

    I had a similar problem with the trial system. I was told by the Boston Scientific Technician that it can take months for the electrodes to adhere properly so that they don't move, until the adhesion secures the leads and electrodes there's still a possibility that they could be dislodged. The adhesion times can be different, after all everyone's different.

    • graham6214
      graham6214 Mooncrow

      Posted

      hi mooncrow the boston is the exsact one i had and the prob is that the fusion time is approx twelev weeks in my trial i had 100% succsess that is why i whent ahead with the f ull monty my advice to you is insist on pallel leads as they dont move at all as they are stitched into place unliek theinjection leads wich move at the slightes cough all the best with your quest graham
    • graham6214
      graham6214

      Posted

      sorry about my spelling i ment paddle leads and not pallel lol
  • khi
    khi graham6214

    Posted

    hope your check up went well and they have managed to sort out your scs so that you are getting complete and constant relief and the spasms have stopped.  With any luck they have sorted you out and you can eat baked beans without fear of your T9 and T6 playing up!!  Finger crossed you are sorted now.
    • graham6214
      graham6214 khi

      Posted

      hi ki no the leads in my scs broak and now im waiting to have it removedmad
  • emmb
    emmb graham6214

    Posted

    Hi

    Can I ask what a SCS Spinal Cord Stimulation is please and who is it suitable for?

    thankyou

    • graham6214
      graham6214 emmb

      Posted

      hi emmb a scs is a smmall device which is implanted into you r butt cheek with two leads that are injected into yor epilural space and what it does is send a electrecal pules across your back and down your legs to block pain a bit like a tenns machine but more complex and you are suitable if you have come to the end of the line with surgery and or pain management hope this has helped all the best graham
  • emmb
    emmb graham6214

    Posted

    Hi Graham, thank you for taking the time to explain! I really appreciate that. It does sound like it might be worthwhile looking into.

    Would you think if it might be suitable for Spinal Cord Injury (complete) therefore paralysed and no feeling ..but lots of nerve pain in back and legs and lots of leg spasms? It is not something I'd heard of before. Sorry..I don't expect you to know everything about the equipment etc, but just in case you or others you know are in similar situation. All the best!

    • graham6214
      graham6214 emmb

      Posted

      hi emmb im not sure but if you get refured to your local pain clinic they would be able to tell you but if you feel pain your back and legs then i dont see y not hope this helps graham
  • emmb
    emmb graham6214

    Posted

    Thanks again Graham. Hope you find summat that workss....
    • graham6214
      graham6214 emmb

      Posted

      thats ok i hope you find what you are looktng for graham
  • Mooncrow
    Mooncrow graham6214

    Posted

    Hi Graham, I haven't been on for some months now, depression stops you from doing things.

    I got my SCS yesterday and it really does hurt but that's to be expected when you get cut about, surgeons are far from gentle. Being a computer and communications technician and have been a first aider I reckon that I'm in the know with technology, but that's not to say that I know everything, I don't. The surgeons and the 'programming' technician have warned me that it could take 6 months for the scar tissues to form and 'secure' the leads and the electrodes. Funninly enough I read through the user guide which also said that the 'sensations' couls still alter if you move, sit or stand. Now you've had this implant 5 or 6 months?, so you're that amount further on with the healling process.

    Right at the moment my 'operation site' feels as though it's on fire or I've been 'Stabbed'.

    You could say that you're lucky that you've been through it and back out again so you know more about that part better than me.

    As I said before I've got a Boston Scientific Precision, but they put in 2 cables. Here's the irony, they fitted it, as I say, yesterday but the battery was flat, so I've got to charge it up and they'll get me an appointment for about 5 days eek , still, I might be less sore by then.

    How long did it take for you to 'lose' the surgery pains?.

    Got to go now, I didn't get much sleep last night and the anesthetic is still in my system, combined they make me drowsy so I'm going to get a nap for about 20 mins

    • graham6214
      graham6214 Mooncrow

      Posted

      hi mooncrow congrats unfortunatly ive had my scs removed due to the leads bending and breaking even arfter haveing it reprogrammed four timessad the surgery pains take about a month to start going away and yes it will take approx six months for the leads to fuse and do be careful of bending and sitting as it will effect the position of the leads hope all goes well for you and not like mine let me know how you get on all the best graham
    • Mooncrow
      Mooncrow graham6214

      Posted

      Hi Graham, sorry to hear about the problem with the leads. Has it all been removed? and will you get a second chance.

      I know that it is very difficult to move around without bending or stretching and this leads to a high chance of pulling the electrodes loose. They do 'anchor' them with sutures but then it's up to you.

      I got a back brace from amazon. It's not a rigid brace and does allow me to move but it puts a 'resistance' on your movements so you get a sort of reminder about moving. It's not foolproof but I found it a help.

      Also, there's a book by Mark Williams and Danny Penman called 'Mindfullness, a practical guide to finding peace in a frantic world'. Its aim is to help you to to become aware of everything you do. I like it because it's relevent to all that you do and helps to be more relaxed.

      It would be nice if you got a second chance at the SCS but if not then I would still get a copy of the book from your local library.

      I hope that everything on this forum can be helpful to anyone who reads it.

      I went to get my sutures out last friday but there's one recalcitrant one where the knot is under the skin and so is the loop on the other side, it means that you can't get at anything to make a cut. The nurse tried again today without success, so I now have to pick up a letter to take to the casualty tomorrow so that they can do it under a local.

      Fingers crossed.

    • graham6214
      graham6214 Mooncrow

      Posted

      hi mooncrow i had the option of a second chance but because of the success rate of the scs working propally i refused as so far ive not heard of any one being 100% succsessful so im at the end of the line after 7 faild back surgery and eight years of pain so its back to meds for me but hay ho it could be worse all the best for you and your scs  graham
    • Mooncrow
      Mooncrow graham6214

      Posted

      Sorry to hear that, I get 80% in the waist and legs so I'm quite 'chuffed'. What will you do now?. Are there other options for you?. Some people get a good success with facet joint injections, nerve root blocks, I even had Botox injected into the 'motor' nerves in the muscles of my shoulders to control the muscle spasms. TENS has helped me in the past but the big problem with that is getting the pads in the right place and stopping them coming loose. There have got to be more options for you.

       

    • graham6214
      graham6214 Mooncrow

      Posted

      hi moon crow ive had all that you have mentioned and more inccluding a fusion at l5s1 that failed so its the end of theline for me but at least i can control my meds ie increase /decrease the only thing left is a pain pump im not sure thats the rout i want to go or if they do it in this country all the best graham
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