Spinal Cord Stimulator — Scope | Disability forum
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Spinal Cord Stimulator

Stuntman1965
Stuntman1965 Community member Posts: 3 Listener
edited December 2020 in Disability rights and campaigning
Hi,
I have been reading that some of you are possibly waiting for a Spinal Cord Stimulator, and as yet don't know of anyone who has one fitted,well hope  I can help as I had one fitted in October 2020 just 9 weeks ago
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Comments

  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi and welcome I am sure other members will be interested in your experience 
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  • chiarieds
    chiarieds Community member Posts: 15,465 Disability Gamechanger
    Hi @Stuntman1965 - & welcome to the community. Thank you for joining & offering to share your personal experience with a Spinal Cord Stimulator. How have you found it? Has it helped reduce your chronic pain? I know it's comparatively early days, but hope it's working well for you. Have you found any negatives? May I ask what condition you have, if that's OK? Again, thank you for sharing, & I look forward to hearing more from you. :)
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  • woodbine
    woodbine Community member Posts: 10,495 Disability Gamechanger
    Hi @Stuntman1965 good evening and welcome to scope, hope you had the best possible Christmas (all things considered).
    Seasons greetings to one and all 🎄🎅🏻🌲
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  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,465 Disability Gamechanger
    Welcome to the community @Stuntman1965 :) Thanks for offering to share your experience of Spinal Cord Stimulators. How have you found it so far? 
    National Campaigns Officer, she/her

    Join our call for an equal future.
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  • Stuntman1965
    Stuntman1965 Community member Posts: 3 Listener
    Hi everyone , Yes I has a stimulator fitted middle of October 19 after suffering a broken neck back in 2009 from a workplace accident,then 2 failed operations having a neck fusion & titanium cage fitted. Let me be honest with you getting a spinal cord stimulator fitted is not straight forward, you have to go through a lengthy process of assessments before it happens, then depending which you have (I had the Abbott system) you have a trial initially to see if it helps before going onto the real thing.
    When you do have the operation be prepared for a lot of pain & discomfort for around 6 to 8 weeks as a minimum could even be longer, I still have a lot of discomfort 11 weeks on from the op & it does stick out of your body if like me you are of slim builds.
    I might have scared some of you but i'm just being truthful, it is worth all the hassle in the long run. Any questions i'm only to happy to help if I can 

    Dave
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  • sara05
    sara05 Community member Posts: 6 Listener
    Hi, I have been listed for a scs but have been told it might be a year or 2 away due to covid ?
    when you say a lengthy process, is it the amount Of appts or the time in between? How long did you wait between being told you would be listed to you getting the surgery? Thanks in advance ?
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  • Stuntman1965
    Stuntman1965 Community member Posts: 3 Listener
    Hi Sara, the process of appointments is very slow you have a suitability appt then go for interview with the consultant then the pain clinic nurse specialist and a psychological therapist. Don't be put off by all this I had mine done in Leeds n I live in North lincs, the benefits outweigh the negatives but it did take almost a year to finally get done mainly due to the covid situation, hope this helps

    Dave 
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  • sara05
    sara05 Community member Posts: 6 Listener
    Hi, yes that’s all very helpful thank you! Mine will be in Leeds too and I’ve been struggling to find much info that isn’t from a London hospital or USA. I was told in October I would be listed but with covid seemingly getting worse I can’t see it happening for ages ? I feel like there’s a carrot dangling and I’m desperately trying to stay positive but my god it’s exhausting! I’m terrified that they will say no at one of the appts ?
    How did you find the trial? 
    really appreciate you sharing your experience and it’s good to hear the truthful side as it’s hard to imagine the recovery involved. 
    thank you ?

    Sara 
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  • navalnurse
    navalnurse Community member Posts: 16 Listener
    Hello
    ive just joined
    i am on a spinal cord stimulator trial at the moment,it was placed in yesterday and I am already feeling a great deal of benefit 🙏 go for follow up next Tuesday ,so hoping and praying,continues to go well and that my consultant agrees that I am suitable for a permanent one🙏
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  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,465 Disability Gamechanger
    That sounds promising @navalnurse :) Thanks for sharing!
    National Campaigns Officer, she/her

    Join our call for an equal future.
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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Afternoon @navalnurse welcome to our great group.
    Thank you so much for sharing your experience on spinal cord stimulator i have booked marked this as i am on the waiting list for this procedure at the moment. Thank You 

    When you are ready have a look around the site, there is lots going on from advise, friendship, chats and games.
    I look forward to seeing you around.
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  • Martin1957
    Martin1957 Community member Posts: 23 Listener
    This is real promising news as i am just going through the assessment program at the moment and now waiting to here if i am been put forward its great to find this website as other than the hospital find out information is really hard The problem i have now is my situation is getting worse by the week as the drugs are not giving me the pain relief and besides that the high dose is screwing my mental health up what with not getting any support from my GPs etc plus other complications from the Cudia Equina IE bladder and bowl i'm now getting to my whits end but is looking like i have found others who have been in my situation
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  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,465 Disability Gamechanger
    I hope that you find it helpful to connect with others here on the community @martin1957 :) 

    I'm sorry to hear that your GP isn't being as supportive as you might like. Do they know the full extent to which you're struggling with your pain and mental health? 
    National Campaigns Officer, she/her

    Join our call for an equal future.
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  • Martin1957
    Martin1957 Community member Posts: 23 Listener
    Hivthe main problem I never speak to the same doctor  twice. They are trying to get me help by sending me to the mental health people but the depression just grows stronger as time goes by I seam to take  4 paces forward and 6 back 
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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Morning @Martin1957 sorry to hear all this do you think all the meds are affecting your brain and the situation with constant pain making you depressed, because i also go through these feelings, my brain doesn't seem to function right most of the time, i also have low moods and problems in trying to motivate myself - i put all this down to the meds and the long term pain.
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  • Martin1957
    Martin1957 Community member Posts: 23 Listener
    Morning thanks gor the reply. Yes like you the meds are really screwing me up to the point the GPs using the levels to the point where I became so bad I was found in a distressed state by the police and I have ended up under the mental health team at Huntington  but I'm in a trade off by reduce meds my spazams have returned. Plus I'm also trying to cope with heart problems again I think brought on by the stress and worry it is causing  me .
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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    oh i am so sorry to read this @Martin1957 am i right in the fact that you are waiting/being assessed for the spinal cord stimulater I am also sorry that the Doctors have let it go this far with the affects of some of the drugs we have to take.
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  • Martin1957
    Martin1957 Community member Posts: 23 Listener
    Hi I have had my assessment and had 3 group sessions for the Spinal cord stimulate. So I'm no waiting to hear from  them if I'm going to be offered it 
    But in the meantime I'm also getting  treated for bladder and bowl problems plus heart and mental depression which have been  caused by the nerve damage and the stress and anxiety of the caudia equine in 2019 and the subsequent operations to try and sort it out which has left me disabled now 
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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Bless Once again i am sad to hear all this @Martin1957 you certainly have had your fair share of problems - you are deff worse then me.
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  • navalnurse
    navalnurse Community member Posts: 16 Listener
    Good afternoon how is everybody?
    im keeping my fingers and toes crossed tightly for a cancellation /earlier slot at Exeter for spinal cord stimulator implant 
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