Hi all, just found this site and have reading all your posts with great interest. I'm on a waiting list to have a spinal cord stimulator (had a trial at St Thomas' in London but it was deemed a failure but fortunately, John Radcliffe in London have agreed to give me another go. Anyone had/have one?
Spinal Cord Stimulation....: Hi all, just... - Pain Concern
Spinal Cord Stimulation....
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Sorry, John Radcliffe in Oxford.......
Good news! Wishing you all the very best🍀. Please keep us updated
Hi,yes I had one fitted in April this year,if you want to ask me any questions please feel free.
Sharon x
Hi sharon as I am possibly going to be offered a spinal cord stimulator was just wondering if it makes a real difference and if you are allowed to drive with one fitted?
Hope you are having a good weekend
Effie
Hi there hope your well,I had mine fitted in April and I must say after being in pain for over eight years it's given me my life back,the operations are painful but I had already had five spinal surgeries by then anyway!!!! As for driving you do have to turn it off bit many people don't.Hope that helps and I hope you find out soon if you can have a trial,that will be the best way to find out if it's for you x
I've just had my initial assessment on Thirsday and waiting to see the nurse,physio and psychologist for assessment. I'd be interested to hear how things went/are continuing with you.
Hi Copper
I went through whole 'assessment' process with St Thomas' and have been through the process all over again with Oxford! Was put on the waiting list in Apr so just waiting for pre-op now. It's approximately 12 months wait so hopefully only 7 more months to go!!
I'm being assessed at St Thomas' - having my 'tech day' on Monday
Really sorry your trial wasn't successful - do you know what John Radcliffe will be doing differently?
Very best wishes
Shirley
Hi Shirley,
Tommy's have percentage benchmarks for pain reduction with the scs they use which I didn't meet - even though I was pretty happy with the pain relief it have me!!
Oxford are trialling an L5 root ganglion stimulator. They've had success with them for patients like myself that have loads of scar tissue etc. It'll also be better as the trial period is as an inpatient rather than having to travel back & forth and managing at home.
It's not as effective as the Tommy's stimulator but it lasts longer apparently! Still have to take meds but hopefully some reduction in the Pain!!
Yeah i had a spinal cord stim, the trail was great. But they never said once they installed the spinal cord stim that i wouldnt have any pain meds, cold turkey was bad. Once i had the hardware, spinal cord stim, it work for a little bit. Then i started having my pain along with the spinal cord stim causing pain. So in 2014 i had the spinal cord stim, and the hardware that broke on my L5. Im still in pain, hope this helps alittle. If you want to know more let me know.
I've got to expect to still need meds and other management strategies with this type of stimulator' but that's ok with me - even a 20% reduction will do me!! Must've been hard going cold turkey........
It was like getting tbone in a car wreck. I found out later that i was suppose to be taken off slowing for three months so that my body could start to produce what the pain pills was during my long strentch of years being on hard pain pills. Also found out that during the trial, i wasnt suppose to use pain pills, unless it was a 10, which we all know feels like all the time.
I have a stimulator implanted in my spine (lower) to control my bowel incontinence
but it doesn't help and I still lose control of my bowels. I also had a sphincteroplasty
and that does't do any good either. Keep in mind that if you get a stimulator you
won't be able to have MRIs done. CT scans are allowable but not MRIs. Hope this
info helps.
I'm aware of no MEIssner with it in which is one of the difficulties most poignant things for me as so far, in 6 years I've had 21!! When I have a flare up, I lose all feeling in bottom half of my body so they need to check for cauda equina which they obviously won't be able to do but sometimes you gotta make choices!!
Hi,my stimulatetor failed for various reasons but when they adjusted the computer settings in the operation theatre and my brain for the first time in 31years acknowledged my body has no pain,I was 56years old then at the time,I'm now 58,the feeling of having no pain was overwhelming,RAYJAYC their giving you a second chance I wish you all the luck in the in the world,go for.
RAYJAYC I've had the spinal cord stimulator implanted for about two yeas now. I have 3/4 of my spine fused and severe nerve
damage. I'm allergic to most pain medicines and can't take anti-inflamysteries due to stomachs issues so the stimulator was kind of my last resort. When I did the trial I seemed to get some relief. Not a lot but some so I figured that's better then none. Since having it implanted I did get relief for about the first month and a half then it stopped working so they reprogramed it, still not working. I had it reprogramed more times then I could count. They told me that scar tissue may be the reason it wasn't helping me. Anyway I'm getting ready to have it removed. If it didn't help much in the trial it probably won't help a whole lot when implanted but then again I'm no doctor so who am I to say. I wish you luck and hope it turns out better for you then me!
Hi KM
The trial worked for me but I didn't reach St Thomas' percentages of pain relief so they didn't go ahead with the full implant.
Oxford are putting in a different type that although still needs some meds and strategies - if it gives me a reduction of any kind for some amount of time, I'll take it!! It seems the 'wonderful' pain relieving scss aren't lasting very long whereas the less effective but still better than nothing types are!!
You know yoyr body better then docs. I have had four surgeries in three years. Each time scar tissue had to be removed bc their was so much. Dont give up, their is alot of pain meds out here for people in need. My leads fell loose, i can feel it worki g in a bad way, but with all the scar tissue im not sure either if that had any effect.