Spinal Cord Stimulator – Part 2

Home Forums General Spinal Cord Stimulator – Part 2

Viewing 15 posts - 1 through 15 (of 58 total)
  • Author
    Posts
  • #30309
    Anonymous
    Inactive

    Please post all new messages here about the spinal cord stimulator.

    Many thanks, Jan at PainSupport

    #30310
    Rob
    Participant

    Hi Liz we are diversifying a little here but my symptoms are both motor and sensory and it would appear largely from L4/5. The test you need to establish whicjh nerves function and which dont is a SSEP test also known as EMG where they test the function of the nerves that are in the areas in which you are affected. As I stated earlier I was told that the stim is best at L4/5 and also the nerves that affect bladder/bowel, In my case there are 9 points at which the problem could possibly occur due to the disc damage. That is what rules out surgery as the worst looking point isnt neccessarily the correct point to try rectification. Therefore considering the risk is 25% paralysis at each point then I have little/no chance of retaining leg movement at all. That is what makes stim so beneficial for me. My symptoms are wide and varied and include everything a nerve would generate pain and motor wise in the foot and pain wise in the leg. It really is bizarre at times !

    #30311
    Rob
    Participant

    I apologise to direct mailers as outlook has gone down. I am not hiding and know there is alot of mail jammed there. Please send townsidehouse@yahoo.com and I will reply as soon as poss..Rob

    #30312
    Liz
    Participant

    Rob

    I have emailed you off line and was wondering if you had received it or not? I was hoping that I could ask you some more things about an appointment that I have coming up in a while. I am going to see someone who has more experience than the place that I am currently seeing, to see if they feel my pain might respond to SCS. I am having problems again as the blocks that I have, wear off quickly and off course there is a risk each time they do them. I feel that I am too young to be stuck with chronic pain………….not that anyone should have to put up with I either…..
    How’s things with you? Any more news or nearer?
    Kind Regards
    Liz

    #30313
    Rob
    Participant

    Apollogies I have been back in Belgiun and I only got back today. I could read mails there but not send but am catching up right now. I had gone really to look at the infection risk which is a point that I have to consider hardest and I may seek to miss the trial stage or certainly reduce it to minimise that risk. I am waiting for my Walton appointment which they tell me will be within 15 weeks. Thats 15 weeks from when I chased up and not from their undated letter !! I have decided that I will definitely be going ahead unless there are serious reasons not to and if I have to pay then so be it. The results I see I have made me realise that accepting a condition and working around it soon has made me lose sight of normality. Next year is plead with Walton or save up year and there are no doubts in my mind whatsoever. Liz I hope that you gain ground by going further afield….unfortunately we have to go where the skills are greatest for our own well being as well. Take care and hope you all have a very merry Christmas and a far better New Year. I will catch mail up in the next few days and thanks for the support. Rob

    #30314
    nicky
    Participant

    hi im new to this ste and ive just read your comments about scs i had 1 fitted for the 1st time 10years ago which we paid for but unfortunately the battery only lasted 1 year but since then i have had 8 more stimulators done luckily on the nhs but even the new bigger stimulator that is supposed to last 10 years only lasts me 18 months i must admit it does take the edge off the pain but i still take a whole cocktail of drugs with it including morphine but when the battery runs out of the scs i cant cope without it

    #30315
    Rob
    Participant

    Hi Nicky
    What make/model are you currently using and have you been given a reason for the poor battery life. The current 10 year battery is relatively new so I guess it still needs to be proven in every day practice. Interesting that despite not being a miracle that you have a better pain level with it than without…I call that success and I think this is fairly normal. All I have been in contact with say dont expect a miracle but its a huge help. Have you had any problems with the long term implantation or does it remain fairly stable?

    #30316
    Anonymous
    Inactive

    hi rob the reason the stimulator dosent last me that long is because i have it on 24 hours a day and because of the way the electrodes are placed on the spinal cord i do not feel the stimulation until they have it turned up high. the company of the machine is medtronic and the model is a synegy i dont have any long term problems except one of the electrodes are broken but because they have been stuck to the spinal cord for so long it is a big problem removing them so they have had to find an alternative setting without using that electrode

    #30317
    Rob
    Participant

    Thats fine Nicky and I understand that…you need to punish it and it returns the compliment. I am looking at the restore which has a ten year battery but I doubt that I would have to use it 24 hours at a high level. I know that this makes a huge difference to the power source and I can see why this is a problem. You paid for your first??? then did the NHS take over ?? I may have to initially fund as well if I meet obstacles along the way. I have basically funded myself to get things moving so its becoming a way of life !!
    Not brilliant to pay insurance and then find they are underfunded but there we go. The electrode couldnt be removed then ?? not that it matters I suppose does it?

    #30318
    nicky
    Participant

    youve definitely done your research i havent heard of that one is it made by metronic. my
    private health care have now cut me off after paying for 2 fusions and every injection and treatment under the sun they now wont pay out for my back anymore but they paid two thousand towards 1st stimulator and we paid the rest hoping that it would last 5 years like they said, but that one lasted 11 months so luckily the consultant i was under got me in on nhs and they have been paying out ever since

    #30319
    Rob
    Participant

    Thanks Nicky
    The electrode thats not working presumably is part of the cause of having to run the stimulator at such a high level. From what I understand poor electrode siting causes this too. My own pain consultant offered to fit for me but admitted that he didnt consider the electrode placement as too important. I was advised in Belgium that it is critical for the very reason that the stim then has to be run too high with poor siting. This not only creates charging too often but uneccessarily strains the equipment. My Pain Consultant shrugged and said he didnt really know and thats why I am awaiting referal elsewhere. If you are running on one electrode now presumably this is going to highten the problem as time goes on?

    #30320
    nicky
    Participant

    unfortunately even before the electrode broke down i was still having to have it set high due to the placement of the electrodes but like you said they are not intrested in replacement they have said it is because it is difficult to remove as once they ae stuck on the spinal cord they cant be removed. i cannot use my stimulator on high if i go out as the stimulation is so stong in my legs (even though my legs are fine and i dont need it there) as my legs turn to jelly and i cannot walk.

    #30321
    Rob
    Participant

    Nicky… where are the electrodes placed and where was the pain that they were trying to reduce? Unlike you all my pain and loss of mobility is in the legs.Ten years on is it fair to say that you feel better off with than without. What are the drugs that you back up with ? I am currently on fentanyl/ co codamol and really need to up levels but am reluctant as i make s ,me sleep so much…like 80% of the day and thats why see the stim being such ahuge benefit

    #30322
    nicky
    Participant

    my electrodes are placed on the thorasic spine in the middle between neck and lumbar spine and the battery pac is in my side just above the hip but my pain is all low back luckily my legs got away with it. I have scheurmanns disease and something called schmorls nodes and i have been in agony for the past 18 years the 2 seperate fusions that iv had has made me worse and they are not sure if the second one has taken so they are thinking of a furthur 4 level fusion. I have taken part in 2 pain management programmes one of them was input i spend most of my day lying down on my bed as thats the only time that i can cope with the pain i am currently takin 100mg amitriptylne 200mg of oxycontin 80mg oxynorm evey 3-4 hours celebrex preabalin twice a day stilnoct sleeping pills im sorry to bore you with my story Rob how did yours begin

    #30323
    Rob
    Participant

    sorry not bored at all …infact interested and will mail you shortly. Take care

Viewing 15 posts - 1 through 15 (of 58 total)
  • You must be logged in to reply to this topic.