Spinal Cord Stimulator

Hi, Just felt i needed to reply to your post about the Nevro Senza SCS.

I also have one implanted, when i had the trial i had a major reduction in pain releif not fantastic but enough for me to say ys for the full implant, I had mine put in March of this year and have not had the same pain releif as i did when i was on the trial ?? 

I am still on a lot of my pain medication have not been able to reduce any and also have so far had 5 lots of re programming x rays to check leads etc which had moved, but so far not getting the pain releif i experienced on trial arghhhh its just so frustrating.

Also if i have a program up to high i get very bad frontal headaches 

I can't imagine how frustrating that be for you.  I am so sorry it hasn't worked out for you the way you planned.  We are no where even near being considered for a trial yet, my husbands accident was now 5 years and 2 spinal ops ago, they just keep giving him appointments in 6 months and then not doing anything.  We have now been referred to neurosurgeon so we are hoping to get some joy.  He is so much worse, he in only 43 and is just about managing to work but at the weekends he feels so ill that he just has to rest.  He can't walk very far and his activity is far less than he used to because the pain is just too much and after 5 years of no respite I think is becoming all a bit overwelming.  I hope they manage to sort your SCS out and get it working to provide you some relief, maybe could they consider a different sort if there is one.  Good luck.

hi sandrac it sounds like you are haveing the same problems i had with  my scs the leads have most likely moved twisted or broke and now im waiting to have the scs removed so if i was you i would insist on seeing you consultant and getting it sorted out all the best graham

Hi graham6214 I am sorry to hear of the problems you have had, have they said that they are going to replace it or are they going to just remove it?  If by some mircale we eventually get offered a SCS I will follow your advice further up this thread and see if we can have one with the paddles that are sewn in.  I don't know what to do to help my husband he seems to be so young for all of this to define his life and pain is ruling him at the moment.  I really hope that they can help you Graham6214 and you manage to find something that works for you.  Take care.

Hi everyone im new to the site so i apologise, im having the trial at the Walton Centre in Liverpool on 19th Dec im so nervous.While on the waiting list for the trial i have been on a pain management programme (PMP) at the Walton Centre which did help.It compromised of a 6 week course (2 weeks at 4 times per week 9 till 4 then 4 weeks at 2 times per week).This was really beneficial as you see Physios, Psychologists, Occupational Therapists, Doctors and other people the same as you! 

They even put you up in a hotel if you live out the area it really did help 

Just letting you know and needing some reassurance as im so scared of my trial lol

Ady

I am sure it will be really helpful for you.  My husband has only just been referred to a PMP as previously the pain management consisted of a "doctor" telling him to think of a beach/waterfall which was of no help.  So I am hoping that he will find the PMP as useful as you did.  I obviously can't speak from experience but the specialised centres that deal with SCS I am sure are very aware of how nervous people are and are also very aware of the amount pain that you are in.  Good luck and hope it goes well and works for you.  Take care.

Thanks i hope so

You will find PMP useful the hydrotherapy is good also the mindfulness sessions help you to acknowledge the pain then put it to one side (with practice) 

Hope everyone is coping lol take care

hi edna it sounds like your leads have moved or bent over i had the same prob with my scs and was told that i neeed paddel leads which are stitched into place unlike the other leads that just float untill they fuse them selfs which takes tree >six months hope this helps and speak to your consultant all the best graham

Hi Graham, I have 2 paddle leads already (I thought paddle leads where now the norm tbh) & unfortunately after being fully checked over its nothing as simple as that, the wise peeps have decided that whilst my system is working correctly its just not effective anymore for me, I've had plenty of reprogramming sessions & I'm currently using all lead sections & running 4 programs, this is the only way I can get the small amount of relief  I currently do. I do have an appointment on the 27th to see what ither acenues are open to me, a morphine pump has been mentioned but I'm not sure I want yet another op, yet another implant but we shall see, I suppose any chance at easing the agony should be grabbed with both hands. Hope you're all having a easy day on the pain front today x

If you do social media there is a group on facebook, spinal cord stimulators UK & a lot of the peeps on there have had their implants done at the walton x

hi edna how long have you had the paddle lead scs for they wanted me to have them after the injec tion leads fialed and i refused it sounds like ive made the right chioce and what part of the country are you in im in east london all the best graham

Hi Graham, I had the paddle leads fitted with the perm implant in May 2014, I had the perc leads for the trial & had amazing results, I went from not being able to get out of bed unaided to wanting to go out dancing, I even did a sponsored 2 mile walk/hike that wasn't fun at the end but it showed how much it helped. I asked the question if the change of lead type could be part of the reason why I'm having such a poor response now & was told categorically not, paddle leads are supposed to be much better. To be honest I'm not surprised that things have now gone South to be honest if anything could go wrong it will go wrong with me 😏 Do they have anything further to try with you, I'm not sure what your back story is & not prying, it's just good to learn as something another consultant try's may help me if I mention it to my neuro 😊

sorry forgot to say I'm in Leeds West Yorkshire, I had my implant done privately at The Spire in Leeds under Bupa

hi edna my story is had faild back surgery back in 2007 and been in pain ever since around s1/l5 andd syatica left leg and im now at the end of the line the scs was my last hope have tried everything  from facet injections to accupuncter now back on meds 30 plus tab a day but hay ho theres always someone worse off than me if you know what i mean allthe best graham

Sorry to hear it the end of the line, I find that prospect so daunting, I can't resign myself to this for the rest of my life, I'm 38, I recently quit my job as I had to accept after a year plus of 'light duties' I just couldn't do it & I was putting myself & colleagues at serious risk, I was a corporate electrician, strange job for a girl, I know but I loved it & had fought so hard to be accepted only to be sabotaged by my own body. I know I'll never be normal but to be able to go shopping, go for a walk, a meal, cook for my family, is that too much to ask, otherwise I may as well just give in now. But yes you are right there is always somebody in a worse position x

Hi,sorry to butt in.My hubby is scheduled to have a Nevro Senza trial on Friday 9th.At Spire hospital Leeds.His consultant is Dr Barani (short version).He is an anaesthetist /pain consult.Hubby had 2x discectomy laminectomy on L4/5.Last one resulted in Cauda Equina .Has had to stop working and uses mobility scooter to get around.his life sucks.This is last chance for him.We heard that the Nevro devise works at a higher frequency and there is no buzzing.Perhaps this might be an option for you?Good luck.

Hi Beverley I'm under Mr Pal & Dr Barani, both amazing guys, I can't speak highly enough of them both but Dr B holds a special place in my heart, I currently have the Nevro fitted & your right it's a HF device so no tingling although they can set it at LF so you can feel exactly what it's doing, its a nifty bit of kit, it's what's keeping me from being bedridden just unfortunate for me it's no longer totally effective & I'm back on the morphine etc. I'm seeing Dr B later this month at The Spire along with Ben the Nevro rep, I'm hopeful they will have something up there sleeve so to speak 😃 

Dr B is a lovely guy.Sorry it's not so effective for you.Maybe they can do some tweaking.I can't imagine they like giving up.I do hope they can help you it's soul destroying isn't it?You are amazingly upbeat as a lot of you in chronic pain are.Fingers crossed for you.All the best for 2015.

Hi I am thinking of getting it permanently too, on trial now and I couldn't believe the results, I am hoping to get some relief I have failed back surgery plus arthritis and all the other stuff that goes wrong, but I am hoping it works, the rep for the company seems to push you into getting the permanent one, I wonder if its two different systems, cause why would we get relief from trial and than the permanent one goes to sh*t, well I will keep the updates when I get the permanent one. Good luck everyone!!

I hope it helps you very good. A failed surgey must me hard to deal with. Even with this limited down time is driving me up the wall, but going to b well worth it. I just keep positive thoughts too help through the post op healing.

dEAR sANRA,

i REALIZE IT IS A YEAR LATER, and I don't know what your situation is now.  I can pretty much tell you why your permanent implant is not working as well as the temporary one because this is what happened to me.  In the temporary placement during the trial, they figure out what is the  best place to put the scs leads. My surgeon decided to put the permanent one in a different place because there was some scarring in the area where it was supposed to go, and he doesn't like to deal with scars, and 2 he was pretty sure it would work in a different spot. I found this out about a year later what really happened when another doctor explained it to me. He said the surgeon I went to had a habit of doing that. You said the leads had moved. Well that's what's causing the problem. Good luck.