Spinal Cord Stimulation....

[RAYJAYC]

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?

[RAYJAYC]

Sorry, John Radcliffe in Oxford.......

[Barnclown]

Good news! Wishing you all the very best🍀. Please keep us updated

[sharonb45]

Hi,yes I had one fitted in April this year,if you want to ask me any questions please feel free.

Sharon x

[littleeffie in reply to sharonb45]

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

[sharonb45 in reply to littleeffie]

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

[Copper283]

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.

[RAYJAYC in reply to Copper283]

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!!

[Copper283 in reply to RAYJAYC]

Good luck🍀 fortunately if I'm successful with all the assessments I will have had the process in 4 months which I'm really surprised at the speed

[sharonb45 in reply to Copper283]

Hi,like I explained in the previous message things are fab thanks,just wish I'd had its years ago it was a long process to get from start to finish but well worth it x

[Curlygirl54]

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

[RAYJAYC in reply to Curlygirl54]

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!!

[Bryan08]

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.

[RAYJAYC in reply to Bryan08]

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........

[Bryan08 in reply to RAYJAYC]

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.

[spongemuffin]

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.

[RAYJAYC in reply to spongemuffin]

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!!

[RAYJAYC in reply to RAYJAYC]

That should've said MRIs - bloomin predictive text!!

[Simba321 in reply to spongemuffin]

Hi I've just read your message about a stimulator implanted in your spine to control your bowel incontinence

Why did u have it done ?

[Raffles12345]

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 in reply to Raffles12345]

So pleased for you!! It's so good to hear positive news about stims!! Long may it last!!

[KMD731]

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!

[RAYJAYC in reply to KMD731]

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!!

[Bryan08 in reply to KMD731]

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.

[Bryan08 in reply to Bryan08]

Think about doing the trial on the pain pump.

[RAYJAYC in reply to Bryan08]

Hi Bryan, tell me more bout 'pain pump'?!