Trial spinal nerve stimulator

Hi there

I haven't posted for ages just been getting on with preparing for this trial by reducing my pain medication to as little as possible to give it the best chance of the trial working.Although having it fitted wasn't the best because of the pain I was in after I am delighted to say it was a total success and from a normal pain score of 8 or 9 I was down to 1 and 2,the only downside is them taking it out after two weeks and now I'm back to my normal pain again which to be honest is awful and is getting me down,I know I shouldn't be but I can't help it.I now have to wait 6-8weeks for me to heal then I will be having the permanent one Fitted.To be nearly pain free after nearly eight years was amazing I just hope the next one is as successful and I can have a bit of life back.If anyone would like to ask me anything please feel free.Sending hugs to everyone for as painfree day as possible.

SHARON xx

24 Replies

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  • My husband had his trial last year, after waiting for nearly two years and he is having his spinal stimulater fitted on the 28th. January. Did it help you with sciatica pain?

  • Hi there

    I waited a long time too and it's awful now going back to full pain again.I don't have scaitica mine is nerve damage due to disc prolapse x

  • Wow Sharron soooo pleased gor you that the trial went so well,what a great drop in yoir pain score.Really hope the parmanent one is as good,It is hard now waiting but keep your eye on the prize! Can I ask what is the cause of your pain? ?..kim x

  • Hi there

    I'm so happy but feel like a kid thats had there dummy taken off them lol.I had multiple prolapsed discs and after four ops and a spinal fusion it's left merits serve nerve damage in my but and down my left side,been like this eight years now x

  • Hopefully you eill be a new woman! Does this work for coccyx pain do you know?

  • Gosh I hope so not just for me but for the family,I have coccyx pain too and it did help with all pain,my leg which is always cold was warm and no cramp other good effects too but when I had to do my evaluation sheet I had to ask family member if they noticed a difference in me,my 13 year old said Mum your smile is real,that melted my heart and was so true x

  • Ah! Just wondered as my problem is coccyx pain and its the pits x

  • That is the pits!!!!

  • Hubby also has prolapsed discs and nerve damage in lumber spine and cervical spondylosis and nerve damage in all his limbs. However, the surgeon said the stimulator would only help the sciatica. He has been disabled with it all for ten years, after many failed procedures.

  • That's not good!!! Well I'm telling you first hand it helped me,think he maybe needs to go back to see his doctor because that was the reason for me having it done x

  • Please let me know what your condition is and what the criterion is for these devices. I tried to get on a clinical trial for something similar I nthink but it was too far away for me to manage the travel

  • Hi

    The reason I had mine fitted was down to nerve damage after multiple prolapsed discs,iv also had a spinal fusion and been on every type of pain medication going.The thing I have had to do is reduce my pain medication to as little as possible to give it the best chance of working and for me to feel if it's working.I have had to travel too but to be honest I'd have gone to the ends of the earth if it means I'd be in less pain.If you want to know anything else just ask x

  • I have sciatica but I have radio frequency where the nerve is burnt it does grow back but it takes about two years i'm due to have it done again February

  • Hello Sharon,so good the trial worked so amazingly for you,did your pain specialist organize this for you? And where is your pain,is it all over or I one area,I would love to have a trial,I'd pay for one,I ask my specialist years ago and she didn't think it wold help,I use the tens continually on my back to get the tingles going down my legs which are in contact 24/7 pain scores of 7/8/9s i can't walk very long distances now and use mobility little gem,I know some people don respond much to them,it was so brilliant it has for you,could you let me know how it came about and if I could find out if I could have a trial,good luck when next on is fitted,it will work just as well as the first.I did hear the nice are wanting more people to have this procedure as not enough are given the opera unity. Have you heard of jon kabat Zinn he's a mindfulness teacher from the late 70's and in massetucettes dealing with people with chronic pain condition who's drs had said the they were sorry but you are going to have to learn to live with this,then jon came along and started mindfulness traing and very genial movement meditation.Have a look at his CDs and books one is called full catastrophe living it is mind blowing on our minds and bodies,but his body scan meditation I find so powerful in renga gig with our painful bodies,there is no wrong or right way of doing the meditations he says you are in the drivers seat.to everyone on the forum have a look,Amazon have loads but u tube is also a good source of talks by him.with chronic pain we have the first arrow. (Injury/illness) then over time any 20 arrows of emotional suffering ontop,it is the second arrows that can be changed,but time and patient has to be and a bit of work and dissapline too.I now listen to. his 45 min body scan on u tube every eve in bed,it does relax an exhasperarted mind after yet another tortured day,have a look it may help,but any info how u got trial stimulater. go ahead I'd love to know

    Warm wishes

    Wendy

  • Hi Wendy

    I have seen and gone through all the information you have talked about before and a lot more too but to be honest it doesn't really do it for me.My pain is in my bum and down left side,I got to know about the stimulator through my pain doctor in Halifax but had to be referred through my Gp,iv been so lucky to have such a wonderful doctor who has been there for me from the start.I feel very blessed to be given this chance as I know that a lot of people would like to try it,I was told I am a good candidate for this to work so it is in my favour,my main problem is nerve damage and at times my pain score is 10 and I suffer from serve weakness and drop foot on my left side and I have been told the problem I have will probably go all the way up my spine.Good luck looking into finding out anything and I will try to keep you up to date.

    Sharon x

  • I am very pleased to hear that the trial was successful and that the permanent electrode is going in I had mine 24 years ago and have needed a replacement electrode about 8 years ago My pain was approx reduced by about 50% but that made things very manageable for me I do hit bad spells but I know in a few days with adjustments to my pain medication it will settle I am so happy that you are feeling so positive about everything At least you are seeing light at the end of the tunnel

  • Thankyou for your reply,it's also good to know its working for you that's fab news.Just carnt wait for the permanent one to be fitted.

    SHARON X

  • Just hope that all goes well for you I had so many things done and tried over the years and didn't know how things would go for me I had the electrode put in by a Neurosurgeon so it was fixed I had an external box and had to turn it up and see how it went Initially he had not hit the e xact spot Told me that he needed to have it exactly in the right spot That spot he said was like the tip of a biro pen I was then told to turn the box on full and when I stated that I had to turn it down when I passed urine He then the following day decided to move it by 1 mm and I didn't know that he had decided to implant the battery unit at this time I remember wondering why I was in so much pain after theatre until someone told me the following am that full implant

    I didn't know at that time my Consultant's wife was critically ill in fact she died 2 days later He was so confident that all was going to work so went ahead and did the implant My generator is over my hip area rather than at the front He maade this decision as he thought I being slim might find it less intrusive At that time the unit was switched on with a magnet I was not given the magnet for the first 4 weeks as they wanted me to have it switched on 24 hrs a day Now of course as things have progressed I have the hand held unit for the same purpose That also allows you to turn up or down depending on how your pain is I found it difficult to sleep with it switched on as when I turned over in bed the stimulation woke me Nowadays I have mine switched on 24 hrs a day and with the years hardly notice it I do turn the stimulator up if I hid a bad patch but for the most part it is at a level that is acceptable As I have said I had my unit put in in 1991 I remember it clearly as my pain was as a result of damage done when my Son was born in Jan 1971 When I first saw my Consultant and various things were said he stated that I had 20 years of pain that had destroyed my life and at that time my son Stephen was 20 He was 44 on the 2nd of January There is hope and there is life despite pain and we do learn to live with it Not as would like to be and I did become very depressed about 3-4 years after my medical accident but in the end I decided I either lay down under it or tried to pick myself up and get on with my life I was also aware that sometime down the road there might be something new and that continued to give me hope I do hope that you implant goes ahead and that you will find relief from your pain I know I will never be pain free but with medication for the most part I am pain tolerable and for now that is the best I can do I try to be as positive as I can be and have learned that on bad days or bad spells I adjust my medication and hang in there I wish you every success and that you don't have to wait too long until you get you permanent implant Good Luck

  • While I call my situation a medical accident and that is what it was and as a Midwife it is typical that this should have happened to me I did nothing about it but had I known then what I had ahead of me I would have had no hesitation in sueing However nothing would have made any difference to how much I have suffered over the years I tried to be grateful in having a baby who was not brain damaged although at the outset I had no way of knowing he would not be Someone was talking about their coccyz removed about 6 months after my son was born

    Thinking back to when I was referred to the Neurosurgeon I probably waited about 3-4 months to see him and waited a further year until not even so much the funding but he told me to pray he could find a bed for me Like you I had to go to a different city to have the treatment Recently when I was at my pain clinic annual appt the Pain Consultant told me when he had started there 5 years ago they were doing something like 30 or less a year and now that had increased to in excess of 120 annually I am sure that far more people would benefit but it is expensive and obviously money allocation is important My pain is in my bottom in my perineal area and the stimulation sensation is right down into the soles of my feet Sometimes I am a little clumsy as I am not always 100% where my feet are but I am just grateful to have the implant Once again good luck and for those of you who think you might benefit don't give up hope just try and get a referral and see where that takes you

  • Hi Susan,

    Thankyou for your reply you are very kind.I don't expect to be pain free either but I would be grateful of any relief and like your style I will have the option of a boost button as they call it and also the one I'm going to be fitted with I won't even feel it like I did with the trial one.I was a bit like you I was left too long before they operated causing me to have bladder and bowl problems too which is not good.All I would like is a bit of life back and I don't think it's too much to ask.If I felt like I do now I would have sued too but my Mum was ill at the time I was ill and she passed away so the timing was wrong.I just live in hope that every day my letter comes through the door. I just want to spend as much time with my kids and hubby as pain free as I can be.You take care.

    Sharon

  • Hi Sharon, I joined recently after being told today that i should start research into have a spinal cord stimulator fitted. I suffer from chronic abdominal pain and have done for 5-6 years. I'm from West Yorkshire and was wondering where you had your surgery and who did it? Where they any good?

    I'm currently being looked after by the head of the local pain clinic at Calderdale and we have tried medication, which brings some relief, RF treatments which only give slight relief for a limited time, so my consultant said in a email today that i should seriously start looking into SCS unless i want to take up RF as a hobby lol. I found your story and although yours is for back pain I'm still interested to learn more

  • Hi there,I too was told about the stimulator by a consultant in Calderdale Mr Dandy for short.Iv been referred to the LGI and now been treated over there,I'm now actually writing this in bed in Ilkley as I'm having the surgery today at Warfdale hospital and I have to be there for eight so myself and hubby stayed over.I'm very frightened as you can imagine and very nervous but if the trial has anything to go by I should be more or less pain free.Mine is a lot of nerve damage so was told I am was a good candidate for this,if there is anything specific you want to know just ask.

    Good luck

    Sharon x

  • Sharon just come across the post 10 month ago on the day before you were having your surgery Wondering how it all.went and how much. Benefit you have had Me I just plod on and for 90% of the time I manage The rest of the time I just dig deep Sue

  • Hi Sue

    I must admit I feel like one of the lucky ones, I had a good result on my trial and kept it in for about ten days over Xmas and had the best pain free Xmas in years apart from the pain of the operation. They then made me wait until April to have the permanent one fitted and it hurt like hell I was sore for about four months tbh but now it's settling down and I'm in a lot less pain,I'm lucky that I have the scs that I carnt feel buzzing or anything but I will also say even though it helps it's not 100% pain free.I hope this helps and feel free to ask me anything.

    Take care

    Sharon x

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