Spinal Cord Stimulator – Part 2

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Viewing 15 posts - 16 through 30 (of 58 total)
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  • #30324
    nicky
    Participant

    thanks rob it helps to talk look forward to hearing from you soon

    #30325
    Liz
    Participant

    Dear Nicky and Rob

    I have been reading your exchange of info with interest. As Rob already knows, I am being referred to a centre for discussions to see if a SCS would help me manage my symptoms better. I have chronic pain in my lower back/legs and pelvis, which also affects my bladder-ugh.

    It is really useful to hear your story Nicky, warts and all. I have to say that the positioning of the electrodes I had taken as really important. Does this mean then that they can almost put them where they like? It seemed to me that my local clinic were reluctant to try one for me as this was an issue for them, as I have no obvious nerve root compression on MRI-just changes when they did a nerve conduction test.

    I too, like Rob am curious to see if the SCS had any significant effect on your drug useage- I am trying to reduce my opiate intake as I end up asleep when I take more-reduced pain and asleep- more pain and awake…….constant juggling act!! Would you have this done again with the knowledge that you have now?????

    Hope that you don’t mind the questions, any info is greatly appreciated if and when you feel up to posting. Out of interest do you manage to work at all? I am at the moment but do have good and bad days- I just about manage to juggle life in some form or other.

    Kind Regards
    Liz x

    #30326
    Rob
    Participant

    The electrodes radiate from the ends along the length on a semi circle. Radiating outwards the closer the stronger the signal. If the electrodes are placed incorrectly then the machine has to be urned higher to be effective. That seems to be Nickys problem now as the machine is having to be run too high. That exhausts the battery quicker. The electrode placement is critical not for the immediate result but for the longer term as I understand it. Is that correct Nicky ?

    #30327
    nicky
    Participant

    when having the stimulator fitted it i was hoping to reduce the intake of my drugs but unfortunately this didnt happen and instead ive ended up taking more opiates than ever and like yourself i end up sleeping all the time. Rob was right in saying that i need the stimulator up high as the contact of the electrodes on the spinal cord isnt great. the surgeon did wake me during the operation to ask when i could feel the stimulation but i had a fall a couple of hours after surgery so dont know if that made a difference. For some reason even if i decided to have the stimulator removed they would leave the electrodes in place as they have made a dent on the spinal cord and they get stuck on so tight that to remove them is a risk.
    Unfortunately i have had to give up work as i was a dance teacher but i still have my dance school i cant bear to let it go. I now have teachers working for me . i have gone from being someone who was so active to someone who now cant do anything but i guess you both know what thats like

    #30328
    Rob
    Participant

    Thats a bit of a knock back for me though I do accept that it doesnt work for everyone. My whole reason to take the stim route is to get off heavy drug treatment, I have been on morphine and opiates for over 20 years and the liver must not be happy with the other muck either that goes alongside. What was the original prognosis Nicky ?

    #30329
    nicky
    Participant

    ive just found your earlier conversations on spinal stimulation so i have a lot of reading to catch up on all i can say is there is no way thay are taking it away from me as i cant cope without it even if i just about cope with it.i never had a trial period my consultant at the london spine clinic told me he would do it n 2 stages but he just did the 1 operation but. i did however need a furthur op about 6 months later but thats because something went wrong with the leads. im now gona catch on the 1st half of the conversation

    #30330
    nicky
    Participant

    my pain started whilst i was dancing. then at the age of 21 i feel pregnant. during pregnancy the pain got so bad that i saw a private consultant who sent me for mri scan. the mri showed my spine to be that of an 80year old woman plus it showed scheuremanns disease and schmorls nodes i then tried every injection there is plus physio and altrnative therapy. two years later i had my 1st fusion a scaf of L4/5 i thought i knew what pain was til the fusion.the pain following the fusion was on a pain scale (though i hate them) of 9 or 10 so i was referred to both the walton centre and input input was nearer so i did a month in there, I then went on to another neuro surgeon and had a fusion with cages at L2/3 again this didnt help so in 1986 i had my 1st stimulator fitted and the rest goes on from there i would dearly love to get rid of the opiates but without them i cant leave my house so even though the stimulator helps and i woulnt be without it it isnt a magic cure and i am still comtnplating a 4 level fusion

    #30331
    nicky
    Participant

    excuse date of 1st implantation it should be 1996

    #30332
    Liz
    Participant

    Hummmmm

    Bit of a downer that you have not had success with reduction of the opiates. This is one of my aims, that and not having to have repeated injections of some form or other to keep me upright. I have had on of those nights from hell, and am now completely knackered and have to go to college and hand in an assignment today….ugh. My hubby is also in one of his-it can’t be that bad modes and he just doesn’t want to talk about it!!!!! Seems like when I am on a downer-so is he!!!!!

    I am waiting for another L4 block and I guess that it could be that the last is wearing off-hence more pain. I had a lumber sympathectomy some time ago and perhaps that is less effective.

    Rob said a while ago, that it would be good if the pain could be predicatable, that is a real problem for me. I never know how I am going to be from one day to another.

    Nicky- sounds like you have really been through the mill-how have you coped? I admire everyone that has to put up with chronic pain. It is good to have your input.
    Liz x

    #30333
    nicky
    Participant

    i havent always coped i must be honest. at one stage my consultant said ive done my job now learn to live with it and he kept telling me to lose weight so i lost the stone so that i was the right weight for my height but i didnt stop there in stead i lost a furthur 4 stone and ended in an anororexic unit i was in for 6 weeks and when i came out i went straight on to input the pain management programme it was horrendous for my family as at the time my girls were 4 and 6 but after 18 years i suppose i have had to learn to live with it. im sorry to hear that the injections dont help anymore..Injections always increased my back pain but they do help my neck pain. have you decided to give the stimulator a try i havent ever heard of anyone who was in more pain after having a stimulator so other than the op i guess its worth a try.

    #30334
    Rob
    Participant

    Nicky.I dont think there will be many on here that have coped well all the time and each day throws its dilemmas. I was dropped by a Consultant as he said he could do no more so there was no point and then refeered to the Pain Clinic. It was done in a very matter of fact way and that knocked me sideways too. The ealrly days are very hard to understand and it doesnt get a lot better to deal with but becomes neccessary to plough on. I think that you are unlucky that so much is wrong that the relief is never going to create a huge amount of comfort. My greatest concern is that the stimulator will help but I will just push myself to the pain level again by doing too much. I think in my case I have to accept the findings that the prognosis would be good and I see it as a nothing to lose way forward as well. I would still hope to reduce the medication greatly too but am aware that it just may not work. I feel it has all dragged on too long without enough NHS support and I will continue to push forward so I know ….for better or for worse !! Liz..I think that your case as mine would create a better result as the diagnosis is more clearly defined.

    #30335
    nicky
    Participant

    I hope that it does work out well for you both and that you are able to reduce your medication have they given you any idea when they will be able to do it on the nhs and Rob do you have any information on this new 10 year stimulator as im due for a new one in about 6 months time.
    They were talking about trying the rechargable one but it sounds quite a lot of hassle and then the electrodes woud need changing as well.
    At present i only have 4 electrodes even though the synergy takes 8 but they advised me not to go ahead with having more electrodes placed probably because that operation will cost the nhs more

    #30336
    Liz
    Participant

    Hi All
    Can I ask what the units are that you have and the one that you are looking at?
    Do you know if the referral rule for 18weeks between referral and treatment would apply to something like SCS? Would they have to stick to this or is the funding likely to get in the way?
    Just a thought really??
    Have a date for another L4 root sleeve…..ugh, but after last night, I am sure that it needs doing again.
    Is it possible to access the info regarding the actual units on the web? I have not actually done this, but if you could let me know the unit names, I will try.
    Thanks
    Liz xx

    #30337
    Rob
    Participant

    If you google medtronic restore then there is all the information available that you could need. Sorry Nicky but it is rechargeable and didnt realise that yours wasn’t the same applies to re charging as if the electrodes are poorly placed then the charging is a lot more frequent. The aim is to get over 4 weeks before recharge though it depends on useage and level required of current. I think that the 18 week rule is for initial Consultation and then they can back pedal a bit and the stimulator requires several tests and proceedures before its available including Physchological Assessment. Its then got the funding cionsideration which would vary from AHA to AHA which is always the case for treatment. If agreed then I would expect it to be well towrds the end of the year before it could go ahead.Way back on an early thread it took someone two years and that seems to be the case still. So sorry Liz the wait seems inevitable

    #30338
    Rob
    Participant

    Liz good luck with the root sleeve….hope the wait isnt too long

Viewing 15 posts - 16 through 30 (of 58 total)
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