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Spinal Cord stimulator

May 31, 2015 7:32 PM

Has anyone a spinal Cord stimulator?

May 31, 2015 9:13 PM

No I 'm sorry I don't have one. There are some of our friends that do at this time.

Jun 01, 2015 10:48 AM

Hope i can Share some experiences with my stim and i can learn some of theirs. Whats your pain issue Weezie 12, if i can ask. I'm a German in USA so forgive ME my Bad Grammar.

Jun 05, 2015 2:49 PM

Shakaree, I have a spinal cord stimulator. I have had it for many, many years. When I first got it, it was fantastic. Since it was implanted in my cervical spine (my neck) and that is a very mobile area, it is difficult at best to get the pain coverage that you need but I have to admit that they did work well when I first had the implant done. I had several unfortunate incidences with mine that the leads broke, shorted out or bent. I had the surgery done 5 times to have it reimplanted. At this point in time, I am left with a spinal cord stimulator that does not work, they can't take it out because everything it so scarred in that they would paralyze me if they try to get it out. So there are wires with scar tissue around them that is so thick, it's like rope and the battery still implanted in my upper buttock and it can't even be recharged any more. If I hadn't gone through 5 surgeries to implant this thing, not to mention the surgeries I had to have to remove the broken systems and then heal up for 6-8 weeks and then go back in and start from the beginning again.. If you have any questions or anything, feel free to ask what you need.

Jun 02, 2016 7:41 PM

I'm getting a spinal cord stimulator in a mnth or two implanted in me

Jun 02, 2016 9:25 PM

I did I can check if I still have around

Jun 02, 2016 9:28 PM

Mine is a outside one I'd I never really gave it a chance it is for neck tho

Jun 03, 2016 8:18 PM

Hugs & prayers that it works out very well for you Jojokangaroo! πŸ™‚πŸ’•πŸ™πŸŒΌ

Jun 09, 2016 1:17 AM

My pain doctor just told me about a new kind of stimulator that will be wireless, using a remote control. Implanted into the limb, not the spinal cord. This was what she thinks will help my RSD neuropathic pain. It sounds very promising!

Jun 10, 2016 6:29 PM

I'm getting the one mad by saint Jude
I'm excited to see if it works I'm in extream Nero pain in legs down to toes and I think I have fibromyalgia or something I can't handle people touching me at all I freak out. LoL

Jun 11, 2016 4:51 AM

Hi... i have been put forward for a spinal chord stimulator on the NHS (UK)
...i have many dx including Multiple Sclerosis (MS), degenerative spinal condition , lumbar facet joint syndrome, chronic pain syndrome (CPS), chronic fatigue syndrome (CFS).. failed back surgery syndrome (FBSS)...alas I am on a waiting list (about 2yrs) to get one!

So, i am constantly hooked up to my tens machine... all the time! Its my savior!
Yes i am on a butt load of medication (not literally), including large doses of fentanyl & pregabalin,
yes i have had, and continue to have, constant theatre trips for facet joint blocks or cordal epidurals...
and i have just had my fourth lot of nerve ablation, (cervical & lumbar )
...but my tens machine... even tho it is on all my waking hours, it actually takes the edge off my pain, enough to allow me to reduce my med load marginally...to allow my body to recover its ability to heal itself, in turn i can decompress enough to cope with my pain!
It alows me to have more movement... so i do pilates and i have a recumbent fitness bike (and after 20 years i can ride it again!!!)

Im trying so hard to positively imact my pain... cos i dont have Β£30,000 to get it done privately! (i could have one next week if i was solvent!)

Anyway... i also really respond to acupuncture & reiki... i enjoy swimming (floating in style), walking my dog (crutches & all)... and i practice breathing and meditation exercises... all of which have an impact on my pain!

I am currently trying to titrate off as much of my opioid drug load as i can. I have been in neuropathic and muscular-skeletal pain for 10yrs+

...so i have learned the hard way... that opioids are not the answer! They may play a part... but after long term use... i think they do more damage than good!

I now try to look after mΓ½self a little more, from all angles, holistically & medically, and emotionally & psychologically. Its important to embrace practical and effective treatments & therapies that suit each individual person!

PMA is the one diagnosis that i wouldlike to bestow on u all...
POSITIVE MENTAL ATTITUDE!
In my life i have lived thru negativity and positivity, and all that lies inbetween... so belive me when i say, it makes such a difference in my world, and it will in yours!

So i am excited for the opportunity to have a spinal chord stimulator... even if it is a wait 2yrs!
I'm on the bus... and i have started my journey, destination SpinalChordStimutatorShire!

DONT GIVE UP⚘love Lulabel x

Jun 11, 2016 9:59 AM

Yay for TENS! Helps me too. I am wondering if I could walk around with mine. Acupuncture has been too painful for me but i should try more acupressure. I like the PMA!!!

Jun 11, 2016 10:32 AM

Yes... i can walk my dog with mine, otherwise i can barely make it to the door! Its amazing as part of my regime of pain control!

I do like acupuncture, but i have not expdrienced acupressure myself, but try anything once and if it helps embrace it! After all... dont we all just want to feel better...?

⚘love lulabel x

Jul 04, 2016 12:18 AM

Do you find Pregabalin works?? I went through gabapentin then onto Pregabalin and .......nothing, fuck all(sorry I got a potty mouth)I thought I would at least
feel a little out of it but nothing and they got me up to some stupid dosages 😬😊

Jul 04, 2016 2:25 AM

@Lulabel A big thumbs up its hard and wearing but thats the way to go. Opiods = ive been off them since xmas. Was hard is hard but i feel more alive.. positve attitude is very very important.. as is walking the dog lol. Gx

Jul 04, 2016 2:27 AM

I'm also waiting for a spinal cord stimulator.. suppossed to be september time...G

Jul 04, 2016 2:42 AM

Hi Jah... it works better than gabapentin for me but ive been on it for years... my new GP /not my regular one...shat himself when he saw how much i was on... and now i have reduced but only to keep him off my back after a huge row cos he did not understand chronic pain! Im no better off pain wise... but my head is clearer.. and now im 'back-in-the-room' so to speak! Why did u come of gabapentin may i ask? And walking my dog with crutches on is really funny, luckily he has bad hips and can only go as far as me! We were made for eachother! Shame we cant post pictures else i would post one of him in a new thread where we could all share our furry saviours!

Have a good day everyone and get out and feel the sunshine on ur faces xxx

Jul 04, 2016 2:51 AM

Hi groggy...

Well done for getting off opioids! Wow ur my inspirations for sure! I am trying... but come to a stop to adjust for a holiday (first in over 10years) my head has still got a shuddering effect when i move it too quickly... last reduction i had to come up again... put me in a hole... but fighting to climb out of it ...each day is a bonus! Im up for a spinal chord stimulator but here the waiting list is 18-24months! I wish u good luck groggs... i am interested how it goes x

Jul 04, 2016 3:56 AM

Its just as hard not to turn to them again although i know the theraputic affect will be short and again i will be left in dependence.. i hate this cycle.. and what it does to me.. its the 5th time over the years.unfotunately there is no magic pill.

I dare not but can only hope Re the stimulator: on waiting list at norwich. They said around sept but who knows (nhs). Will keep you posted..

A holiday sounds good Lulabel, forget about the opioids for that period and have a lovely time. Lets face it sun does us all the world of good even if we are healthy. Gx

Jul 04, 2016 4:07 AM

My best friend and her partner are going with us... so my hubby wont have to cope alone with me... first time taking my chair away tho! I am on fentanyl patches every 2 days... so my GP has said she willprescribe me extra to take with... incase any come off in the pool! Shes really really good bless her! Holiday in september for 2 weeks in the canary islands! Ill be thinking of u tho... fingers crossed all goes well for u groggy... i too am interested in ur experience... all the best 😘

Jul 04, 2016 4:21 AM

They always try gabapentin first as it's cheaper. It did nothing, so then went on to pregabalin which did nothing after they got me up to 1800mg a day, all it did was give me a neck tic, which involved me jerking my neck backwards very violently....😬

Jul 04, 2016 4:42 AM

Hi Shakaree

Sorry I have only just seen your post I've had a rough couple of days with personal issues .. but yes I have a Spinal cord stimulator.

For me it does help with my pain to a certain extent but it's not a cure and you propabably will still be on pain meds.

You will be made to see a phycologist who will want to know that you know it's not a cure but will help!

Also they wake you up in the operation which is very very strange !! You can feel it running up your spine and them turning it on and asking if it
Covers all your pain. They can put in up to 4 leads which are controlled by a very large hand held device .. its the size of one of the 1st mobile phones!!

So you will be able to change the level that it is on and also turn it on and off. You will be able to get the pain nurses to change the strength of the pulses and extend the area it covers. It is very strange but does help!!
Good luck with the implant and if you need anymore info just Personal message me xx

Jul 04, 2016 4:54 AM

The most frightening thing for me... and they didnt tell me... i had to look it up...

one of the side effects of reducing pregabalin too fast... are suicidal thoughts! I have had depression bouts thruout my 13 yr journey thru pain.... but this was scarey.... i mean i wanted to ...i thought about how i would do it in detail... but thats NOT ME! I trusted no one... then one day my husband found me hysterically crying saying i was so scared because i really wanted to do it!

He took me to my pain consultant that monday morning and told him, as i broke my fucking heart... he prob saved my life!...

My pain consultant took me into theatre for a cordal epidural to make pain bareable and put my pregabalin back up immediately!

This happened because my new GP took away my pregabalin too quickly because he had no idea about the medication... and did not want to contact my pain team first! He would have been the cause of my death that weekend!

They didnt tell me anything b4 i went on the drug! Im still on it... reduced it slowly by about 25% so far... but i want off it! It messes with my head!

Phew that was a little hard... sorry i had potty mouth... it was only 6wks ago ;)

Jul 04, 2016 10:55 AM

Never worry about potty mouth!! I have a vocabulary that could make a trucker blush, it is just how I talk. I try hard not to say bad words here but sometimes I slip.. If any of y'all have a problem with saying bad words, let me know and I'll just say them for you!! LOL!!
But seriously, I'm sorry that happened to you. I had to come off of Gabapentin because of the side effects, Cymbalta made me weird and lyrica made me suicidal and I deal with an anxiety/depression issue since I was young (long before the pain started). I wish you the best and hope that things settle down for you. Sometimes even pain doctors have difficulty understand pain. It's a very difficult thing to pinpoint a cause and also find things that give relief based on what you're diagnosis. Doctors are just human and can only do so much. I know many feel that because they wear that white coat and have those diplomas on the wall and specialized in pain management, they could perform miracles.. Believe me, I was one of them. I just wanted to be able to go to the doctor and have him say Oh, this is the problem, take this and you'll feel better.. Well, as we all know life doesn't work that way and we all have to find our way through. Thank God for forums like this where you can connect with wonderful folks who understand the struggle and we can lean on one another and help each other through.
I look at it like this.. I used to live for my monthly visit to the pain clinic.. Well, that's a month apart and a lot of life was passing in between. Well, I had to learn that there is joy even with pain and that you CAN do things you love with pain. You have to find that rhythm and take breaks and listen to your body. Also, try to keep a positive outlook on life even when it's hard to do. I always feel better when I can come here and make my peeps smile. So I hope your day is better and try to find a little joy and the gifts we are all given every day. {{{Hugs}}}πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Jul 04, 2016 12:02 PM

@lulabel! yes indeed, pregabilin does have that affect and many more.. i dont take it anymore (since xmas to). And yes suicidal thoughts were present, horrible and very very scary. I hope they have subsided for you lulabel. I know its easy to say but stay poz..

btw canaries!! A nice hol to look forward to. ;).. wow and amazing lovely place to go. Gx

Jul 04, 2016 12:30 PM

I think lulabel was saying that a New GP didn't understand how pregabalin worked and didn't bother to contact her Pain Consultant about lowering the dose slowly..... The effect being what she wrote above😊 Alwayz......I love your Potty mouth, as it means I can use my potty mouth too.... More so on the circle group though!!! πŸ˜‚πŸ˜‚

Jul 04, 2016 12:31 PM

LMAO... Hell yeah! πŸ˜‚πŸ˜œπŸ˜‰

Jul 04, 2016 12:34 PM

πŸ˜‚πŸ˜‚sorry haven't been on there for a while!!

Jul 04, 2016 12:52 PM

It's ok, you'll come back when you can. I'm around. πŸ’•πŸ™πŸ»πŸ˜

Jul 04, 2016 1:26 PM

ThanQ so much for all ur comments...
when it was happening i felt very alone and frightened...
but it has def gone for now... least i know what to look for now... and that im not alone.
i am shocked how bad it made me feel at the time... thanQ for being honest and brave and owning it also... it means allot to hear ur words x x x

Jul 04, 2016 1:49 PM

Yes JAH has it...

poor old GP didnt stand a chance... and im not cross about him persay... its the system!

it frightens me that just one man... whom had not even met me... could actually have that power to remove my medication... without direct consent of the consultant... it coulda gotten very ugly ...very quickly!

My normal GP at the surgery was on holiday... so she couldnt explain my complex case to him, and why she prescribes what she does for me...

...anyway my spinal surgeon sent him a letter asking him to please NOT piss about with my meds... but there's no guarentee this wont happen again!

πŸ’ŠI am only allowed 4 weeks of meds at a time... so i cannot afford to play, 'my cock's bigger than ur cock' ...while the doctors argue over how much medication i can or can't have!πŸ’Š

Argh...sorry i went into a bit of a rant then... hehehe... it just really gets my goat! 🐐

Jul 04, 2016 2:04 PM

My Neuro consultant did the same thing...ripped an orthopaedic registrar a new one, when one time when I was in hospital, he stopped my baclofen(for my severe muscle spasms from paralysis) because he thought he was the dogs bollocks... I just got my brother to get my baclofen from home instead- then my Neuro made sure nothing was altered with my meds.... If they don't know shit, they are allowed to admit that they don't know instead of play with our lives!!!!

Aug 25, 2016 10:25 AM

I'm waiting for one too 3 mnths so far waiting for a Nero implant. Now to be plagued by poss. Neck surgery now having so many simtumes ..plus finally got a appointment with rheumatology dr. To find out what else besides fibro. The waiting game sucks it's are lives at stake phisically and mentally. .

Aug 25, 2016 10:36 AM

They are messing with my meds too it really f.. sucks ass especially when 1 med works really good they all of a sudden want to take it away.

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