Spinal Cord Stimulator, SCS – Part 24

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  • #24451
    Jan Sadler
    Keymaster

    Tina Worth wrote a post in Part 23 as follows,

    “Hi all
    I had my SCS trial in Feb 2014 from Exeter Hospital. I had a Nevro Sensa trial for 9 days and in this time my pain scores went from 10 to 0!!!! I now have a comfirmed date for permanent insertion of 19 May 2014.
    The reason I wanted the Sensa is that I am a scuba diver (I know – but its non weight-bearing once you are in the water) and its the only time I feel normal and unrestricted from my back pain. The Sensa allows you to dive to a depth of 35m whereas all the other brands of SCS state either no diving allowed or to a maximum of 10m below surface.
    I kept a detailed diary during my trial and am happy for people to read if they wish…”

    Tina has given me permission to upload a PDF of her diary, copy and paste the link below:

    http://www.painsupport.co.uk/enewsletter/StimulatorTrial_TWorth.pdf

    For anyone considering an SCS implant it is well worth reading. Bear in mind that people’s experiences will vary according to the procedure and the type of SCS.
    Jan at PainSupport

    #24452
    Mark
    Participant

    Hi all. I haven’t posted for about a year and have enjoyed around 90% pain relief. Unfortunately the splitter component has failed and messed up my stimulation. Now I have virtually no pain relief and it’s devastating. I should have an operation to fix it in about six weeks but I don’t know how I’m going to cope with work.

    #24453
    dalhousie
    Participant

    Walton and SCS.

    I’m going to see my GP tomorrow to ask to be referred for SCS as I’ve done a Pain Management Course at Walton & continued to deteriorate pain wise & this is my only hope. I live just north of Preston & not sure of the best place to go for SCS.
    Can anybody recommend anywhere to go for SCS within reasonable travelling distance of Preston in Lancashire.

    Many thanks for any help/advice. I feel at the end of my tether pain-wise & just want something to help me after four hellish years.

    #24454

    Hi Dalhousie
    We are unable to discuss the merits of individual Consultants on the forum but if you are happy to post your email address then any members with information can contact you privately.
    Kind regards Moderator 4

    #24455
    dalhousie
    Participant

    OK. My email address is visible here. Please contact me if you have helpful information.

    #24456
    Navchic
    Participant

    Hi Tina,
    Well done on recording your experience of the Nevro Senza trial – I’m sure it will really help others planning to pursue this option.
    When I had the stim inserted – the fatigue was the biggest surprise for me. I also had lots of problems sleeping and similarly I mostly wanted a good nights sleep, I could attempt to deal with the pain during the day, but all management strategy goes out the window at 3 am!
    However, even long after I had “caught up” with my sleep, I was still wrecked and for the first few months I needed to sleep during the day for an hour. It was the type of exhaustion that you couldn’t muddle through – my Nevro Rep said that fatigue is part of the reaction as the neurons get used to the electrical stimulation. It does pass though, and at least you can sleep because the pain is so much better managed.
    Now, I feel so much more normal – I haven’t managed to reduce my meds, They would like me to have increased my activity to relatively normal levels and then start reducing.
    Well done on your diary, best of luck with the implant in May – very exciting! T 🙂

    #24457
    flaxgirl
    Participant

    I originally wrote on this topic because I have a SCS and was very kindly wished luck on my 5th shoulder op which was 10 days ago.The surgeon came to see me after the op and told me that I had to consider my ‘quality of life’ and he offered my a reverse shoulder replacement, although before the op he said i was much too young (67) and not in enough pain for a shoulder replacement! I can’t believe that I have to start on more surgery and feel really low about it all! Is it still true that you can’t have MRI scans after a SCS, he couldn’t see the cuff arthropothy and the fact that the rotator cuffs had completely torn off the bone until he operated on me. I’m also worried that the opposite shoulder is going the same way – that too has had the rotator cuffs patched. Sorry this isn’t strictly about SCS and perhaps I should have written it another topic? Since the op on my right shoulder the arthritis in my left thumb has really flared and I don’t know what to do regarding more meds. I’m already taking zomorph, amitriptyline, gabapentin and others for asthma so am not allowed any NSAIDS. Any advice would be welcome regarding other meds I could try.

    —————————

    1.4.14
    NB Flaxgirl has started a new thread “Reverse shoulder replacement”, or use this link:

    http://www.painsupport.co.uk/connect/dfviewreplies.asp?topic=9869&search=

    Jan at PainSupport

    #24458
    Anonymous
    Inactive

    Hi Flaxgirl,

    I’m sorry that you are still in pain. As we are unable to recommend the use of drugs on this forum, I think if I were you I would go to your GP to discuss what other drugs he can suggest for the arthritis in your thumb. Good luck with it.

    Annie x

    #24459
    Navchic
    Participant

    Hi Flazgirl,
    Sorry to hear things are not going well for you. I know I’ve been told that I can’t have MRI – that they would have to take out the SCS in the event of me needing an MRI. It certainly adds another layer of problems doesn’t it. Other people on the site have written about shoulder replacements so it might help to ask your questions under a new heading, or search through the toolbar for others experiences. Take care T:)

    #24460
    dalhousie
    Participant

    Navchic – just out of interest what type of SCS device do you have. I’m not sure with the Nevro Senza whether you can have MRI or not.

    #24461
    Navchic
    Participant

    Hi Dalhouse
    I have a nevro senza and I got a card post op saying no MRI or diathermy, also can’t have ultrasound or laser in that area. Although I had a wound infection in my thoracic wound post op and they did an ultrasound of it with the device switched off.
    I work in a hospital – not allowed in the MRI dept 🙂
    I have read online that with newer devices you can have MRI – but mine mustn’t be one of those. T

    #24462
    frosty
    Participant

    I am so glad to read about Tina’s experience re scs . It brought tears to my eyes. I am going thr the plan with St. Thomas s and am about to go there on Monday for a scientific day . I have a mound of questions to ask them , as there seems to be such a difference in recovery times. Oxford keep u in for ten days whereas in London its overnight WHY such a difference. I have suggested a forum there of prev patients so that a lot of questions could be addressed. As I live on my own I have a lot of issues about recovery time. etc Also a bit worried about procedure , but I guess that is normal . Thanks again Tina

    #24463
    dalhousie
    Participant

    Navchic – Ireland:

    Where did you have the battery implant sited?

    I thought Nevro Senza was fairly new but maybe they have newer ones on the market, going off what you said about MRI etc.

    #24464
    Navchic
    Participant

    Hi Dalhouse
    The implant is in my abdomen. Its big enough, but doesn’t bother me – unless I try to squeeze into jeans that are too small – but I guess that’d be the case even if I had no implant – uncomfortable lol.
    The nevro is out 2 years, only liecensed in Europe and Australia, its on trial in USA even though its made in California. T

    #24465
    dalhousie
    Participant

    Hi Navchic –

    Did you have leg pain as well as back pain. I have back pain. I hear from some that SCS is for people with back pain who have leg pain as well.

    Nevro Senza is for lumbar pain though.

    I hear conflicting reports. Some people say SCS can treat back pain alone. I’m a bit confused.

    Thanks.

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