Spinal Cord Stimulation

From my research Boston Scientific was the only product with wireless charging and wireless remote. They also have 2-4 Leeds that have 16 points per wire. That said the install through pain mgmt is 2, 3 Leeds max and Neurosurgeon is 4. The Neuro typically works with your pain mgmt to do surgery and make sure it goes well, as soon as he clears you than he is done with you. The Neuro is better but higher risk of problems and recovery is way worst. It has been 5 plus months for me and things are much better but still have pain in spine and muscle that attaches by spine and goes to right flank.My advice to anyone at this point would be to find a pain mgmt doctor that can install the three wires than follow the rehab insteuctions as precise as possible.

In my case the the two main problems are more tolerable now than it was. Would I do it again knowing what I know now, still to soon to tell.

may I ask if anyone had a good trial, but has found the permanent implant was not as successful.  Also as I mentioned in my previous blog, have you had pain from battery/anchors.  With thanks Wendy 

My pain, during the trial, was decreased 50-70%.  After the implant, so far, only 20%. It's been about 4-5 months and The Rep is still adjusting the implant. It's a Nevro. 

I might add I had a very easy recovery 

I have had no problem with the battery implant. Most of pain related to that is where they ran the Leeds from implant up to where they went into the spine. Definitely had a burning sensation for a couple months.

My trial was similar in effects to my permanent, only thing was it was only in for 72 hours and did not think it was long enough. Recovery after that was nothing.

Wendy21608

I was so happy thinking that it was finally a god send, well 2 years later I am sitting waiting in the surgery center to have my stimulator to be taken out cause I can not take the pain anymore and on top of it all my dr that is my pain management is no longer participating with my insurance company anymore so now I have no doctor as of January 1st... I'm so upset what do i do now..I need an MRI with contrast to see if I need another fusion in my back as I'm having such bad back pain with clicking noises when I move I'm so scared right now, my surgery was scheduled for 130 it's now 210 in USA it's amazing how they overbook

Take care and I'll keep everyone posted on my recovery and my dr situation

Cynthia ( Cindy)

Best of luck to all who are in pain and can't deal with it anymore!

Hi Cynthia

When I had my stimulator implanted they were 3 hours late,

cause they over book and have emergencies.

Do you have no dr due no insurance or cause your

insurance has changed??

If your insurance has changed start looking for a new

one when you rest a few days after the surgery.

I hope you feel better soon, Have a great Holiday.

We are here for venting, keep us posted

God Bless you

Paul

I heard the st Jude's was pretty good since I'm waiting to go and get my Nevro out its over an hour late I've been sitting in waiting area. Ugh I hate waiting they said it takes an hour but I want it out now, I hate waiting did I say that already?

I hope you the best and you get the right unit,

Good luck take care and hopefully pain free days ahead, sorry I was supposed to put this on hardheads but hit the wrong one but Steve best of luck to you too.

Cynthia (Cindy)

To pain free days)

Good Luck Cynthia

Wish you the best and hope this helps. I am ironically sitting in the office for the first time with pain management doctor number 6. There are so many doctors that can't help or won't so I do not waste my time with them anymore, I just move on to the next. Do your research and if first impression is not impressive than move on. Hope you are no longer in waiting, if you are make sure they take care of you in recovery. Let us know how you are doing.

Steve

I'm going on # 4 in January

Paul

Thanx so much Steve....I got an appt for the trial on Dec 27th so at least I'll get that done..Dr is out of town this week but I told nurse to ask him exactly which brand and model he intended to use with me and wanted him to verify that he thinks he can help my feet pain..That wud be such a dang blessing to have much less pain after all these years !!! Gonna keep reading everything but wanted to say thanx for replying pal !!!

That's what is great about this site, we can be there for each other and understand the effects of living through various problems

Has the doctor told you where he would implant the device and Leeds?

Dear everyone, from my own viewpoint, I'm on the same road as everyone else, disease of the spine in childhood, different surgeries, crisis to crisis, ending with neuropathic and mechanical pain.  So when I heard about neuro-Stims it seemed like the answer to a prayer. I researched every paper and article.  This procedure has been forty years in the making an internal TENS that seemed perfect.  The ten day trial was text book, I felt almost pain free.  Sadly NHS constrictions meant an 8 month wait rather than the promised six weeks (maybe I deteriorated in the delay) the pain relief did not come and the battery has brought its own misery.  Who is to blame? The docs, the reps, the machines, us.  No, it's just one of those things, for us it's just not working.  Would I try another model? no, I don't see the point.  Would I still have tried? yes, how wonderful if it had worked.  I don't know my outcome, I should imagine there will be some more misery to come.  I still reliant on the same dosage of Lyrica (one of my main reasons for the stim). I will post any changes that might be of interest and I will be following all of your threads.  My thoughts and prayers are with each and everyone of you.  Wendy.

Hi Wendy,

I'm really sorry to read that the SCS hasn't worked out for you, I am though so pleased that you are still trying to stay strong and that has given me extra belief that something will also come good for the both of us as long as we believe and hope! 

Al the best for you in your journey. 

Nothing yet....Havnen't seen him since the psych eval thing but he's back from vacation next week so expect more info then...I got enough "extra" around my belt line I'm sure for the device, but no clue on the leads yet...

Wendy21608,

As I was a young 25 year old mom with a great medical billing job in a great hospital who knew that your life could flash before your eyes, it started with what felt like a pulled muscle and turned out to be a nightmare for the last 20 years of my life 1st a blown disc from therapy a therapist not paying attention to the jet and where I was at. At that point my she blew out my disc went on my nerves dr didn't believe me and I had to go to another dr get a tslo brace keeps you mobilized so you get used to the fusion back than, so I died in my surgery which my dr was so shocked when he walked in and I said I know I died his face fell to the floor and I told him a thousand times please take my blood just in case something happens and of course it does so for 15 years blood test for every thing under the sun every 2 weeks at a blood specialist and I ended up with mrsa(staphylococcus) which was from being under so long so my life has been hell and after 2 years off a SCS they finally took it out but now i have no dr on Dec 31 he's money hungry so now i have to start off at square one with 5 Drs appointment and no dr and probably no meds so I don't know what to do, so please o would say I'm glad you didn't do it, cause unfortunately like all of us you probably would ended up like me, so those stimulator's are a hit or miss mine was a total miss.

Good luck best of luck keep us updated on your progress

Cynthia ( Cindy)

Steve45447

My appointment was for 130 by the time they called me back to the room it was 330ish was 2 hours of waiting than I started to get nervous cause my valium started to wear off great I was in so much pain they gave me 3: Tylenol with codeine before going in by mouth than when I came out am hour an a half later a dose of liquid fentynl and Demerol I was hurting, and I can't believe my dr is that money hungry cause of my 2nd ins is state Medicaid and he no longer takes it so I have to find a new dr in like 2.5 weeks nice huh? I hate greedy doctors they su ck lol

Hurting bad

Resting up

Take care

Talk soon keep u in the loop

Cynthia ( Cindy)

To Cynthia

oh dear I feel humbled and very small in the face of other people's pain.  It is so sad to be in one of the biggest clubs in the world.  Pain doesn't worry about gender, colour or creed everyone is welcome.  I am so sorry for all you have suffered and everyone else on this site. I don't have any experience of your medical system, I do understand pain management and it is an end of the road treatment.  So when the drs have explored every avenue, drug, nerve block, Stims and they no longer work, they step back and focus on the next patient, and I can understand that.  As I said, I have a permanent Nevro implant. It's just three months, I switch it off most of the time.  The battery is rather more painful when switched on and I get more pain relief by topping up my pain medication.  So, what will my Team say next week?  Well I would like it removed, but I don't expect them to be very impressed.  Also I will need a general aneasthetic and a hospital bed for at least 12 hours maybe an overnight. GA's lower my BP and knock out my bladder.  I feel extremely guilty, I have taken someone else's chance, I've wasted time and resources.  If sheer bloody minded ness could have got me through this I should be dancing by now lol.  God bless you Cynthia and everyone else.  Wendy

Wendy21608,

It's a shame that we go through what we go through and they just throw their hands up in the air and on to the next number cause that's all we are to them numbers and money especially in the united States it's do sad if u don't have the money.to buy into a insurance company and get help by the state you live in, it's not good enough so they can just kick you out of their practices I was with them for at least ,10 years if not longer and now I have to go to another dr and start all over it is so hard

And depressing

Take care and I will keep you. And updated on my end

To pain free days someday

Cynthia ( Cindy)

To both u and Wendy I feel sooooooo whiney and like I'm truly praying for some sort of miracle whne I hear and read y'alls stories ( Texan, so deal with the slang ok..ha ha) ...I was fine until Marine Corps Boot Camp 1983 and they gave me boots that were maybe 3 full sizes too big and I wore them for 2 1/2 months without the Drill Instructors helping me get the right sized ones..And from there I believe is where my knees, feet, and back went south...My feet hurt constantly and most of our training was done in boots, but at 20 years old you're invincible ya know.....And then 7 years after I get out my knee blows out, my back starts hurting, and of course I've been seeing a podiatrist for a couple of years..And it's just gone on since then.And I had no idea what the VA was until around 2007 and since then they've ben doing so so but are soooooo slow and behind it's hard to explain, so I praise God everyday that I do have my own insurance from retirement with my other job.......So long story short, my backs had l4-l5-s1 surgery, I've got 2 replaced knees at 53, I've got 2 feet with (apparently no one can figure out what to do) permanent nerve damage that hurt 24/7, and my neck has a couple "problems" they're working on.....So I am so praying that this SCS will at least help some of my pain subside and that'll be something..But I read y'alls problems and pains and I just feel like crap and feel I got no reasons to complain..you gals are hurting like crazy and I'm goinna pray to my Good Lord that they find something besides pain pills to get y'all squared away, cause pain just SUCKS and that's that.......So wanted y'all to know that I'm with ya as well and I have my trila scs on Dec 27 and will let folks know if it does anything for me....But I'm gonna keep being a troll and post when it feels right and hope that's ok...I just feel that folks wishing and praying for relief for each other can't be wrong.... Thaty's my story and I'm stickin' to it !!!  

Dear jarhead. (what an amazing name) please don't apologise, it is not whining, it is sharing your experience and in doing so allows others to share their experience and not feel weak.  We've all had a bit of a rough deal, but I take comfort from still being here and still carrying on hopefully.  I also know that somewhere someone today would have told that their disease will kill them. At least pain let's us know we are still alive.

Let us know how your trial goes, I'll be hoping and praying it'll be a good one for you, we've a big time difference between us so I'll try to be clever so you get the necessary amount of vibes lol.  Don't put your life on hold for the Stim, even if it doesn't gave you the right results good things can still happen and Christmas is in between.  Wendy

Hey Wendy,  That was a question that I wanted to ask.  Do they knock you out while they are putting in the SCA and do you have to stay in hospital for a night?  I go to my Dr next Tuesday and I want to have all of the knowledge that I can.

Thanks to everyone for your stories, although I feel for you it has helped me like you wouldn't believe.

Thanks and God Bless all of you

Here in the UK things might be a little different; if the implant is in the back under the iliac crest it can be done as a day case, normally 12 hours, if it's an abdominal implant it's a bigger job and needs an overnight.  I've had both the trial and the permanent with a GA.  hope this helps, ask me anything.

wendy

Paul,

No the dr drop my 2nd insurance company he's becoming to money hungry and he's going to see it once all the patients are gone and doesn't have any money flowing through his office I can't believe Drs would pick money over helping people, it so sad, they wanted me to change my insurance company and than I could stay but I don't understand he's in every insurance company book as taking patients. It's sad I really shake my head but I'm hoping I'll find one with compassion instead of one looking to make his pockets fatter.

Cynthia ( Cindy)

Steve45447

It was unbelievable i know he's no longer going to be my dr but omg! I sat there from 130 eastern time to almost 445 pm I finally went into surgery everyone was gone except 2 nurses the anesthesiologist who came to me gave me 3 tabs of Tylenol with codeine than I had so much to put me under when I came out at 715 pm I had fentynl,morphine, and oxycontin through iv before I left I was in do much pain. But the drive home was over 45 mins with traffic at that time I was so out of it thank God. Slept like a baby that night.

Cynthia ,(Cindy)

Sorry to hear this

My present dr is money hungry  Next month I see another one

God Bless you hope you feel better

Paul

Thanx a million for the support wendy...And like y'all I'm just sooooooo dang tired of pain it's hard to explain, and if it was just in my back that would be one thing, but being from neck, back, knees, feet, it just makes it that much more to tolerate and explain to people without feeling like a wimp.....But, and not tossing this in anyones face or tryin to preach, being a Christian I know there's a reason and I know there's a solution for it, and that makes me keep going and believing...Plus of course, my awesome family and now an awesome forum like this....thanx again to you and the others !!! And prayerfully this SCS trial will help, and like ya said, if not, still got Christmas before to enjoy !!! 

 

Jarhead63,

We are on here to tell each other stories and to complain vent find answers give some advice whatever works, so jarhead you are fine, I'm just praying I find a dr cause I don't want to go without any pain meds I went without in years and it was do bad and the pain was so bad I just couldn't do it.

So I'm hoping the Drs office that I'm getting kicked out of cause of my insurance will give me at least 2-3 months supply cause there are hardly any pain management around my area it's so sad that Drs rather have the money than helping patient.

So upset

Cynthia ( Cindy)

Just out of interest, I was just about to leave for appointments with the pain clinic and physio when the hospital phoned cancelling. A roof tank had split and 6000 gallons of diesel had flooded the maternity unit and caused the hospital to be evacuated our nearest other A&E is 20 miles away.  Sort of puts my problem into perspective.  Although you've got question  what bright spark of a architect thought the roof was a good place for a fuel tank!

wendy

Unfortunately that's like Medical Mistakes with one difference. The Structural Engineers insurance will pay all costs associated as the weight of that tank should have been in his design. It will be a no trainer and handled immediately. Cintrary to medical mistakes where if you can get an attorney it has to get approved by a review board, this takes years than you can sue.

So, I've been to clinic, have been reprogrammed and am good to go; I've got a Nevro Sf10 one that you can't feel.  We have nurses rather than Reps running them, don't know if that makes any difference because it all seems a bit of trial and error.  There is new research coming in all the time, probably feedback from all of us using the systems.  The mantra seems to be less is more.  If you're in pain turn it down not up.  Instead of using prog 3 + 6 lights I'm trying prog 1 + 2 lights.  They've altered me so it effects me higher up the spinal cord, it was just below the waist.

each time I glean a little more, the shocks (spine, under ribs) are because I'm over stimulated, so turn it down.  The pain from the battery area is down to my neuropathic pain.  Actually a pneumonia vaccine gave me such a painful arm I needed to check it out, so the pain level thing makes sense.  Well that's all folks, I hope some of this will be helpful, let's all travel forward positively into the new year.

wendy

Hi Wendy

I'm in the UK too. I had SCS fitted back on September 12th...a weeks trial that seemed to go well, the cut the wires, left me a week with nothing which was awful as pain seemed worse then fitted the permanent device, Boston Scientific...its been no change pain wise since. I'm feeling rather down the last few days, might be this damp weather were having, cause pain seems to have increased.

Myself and another lady were placed on a trial (6 of us in the UK) but they took me off it at the end of November as i wasn't responding to it.

I still have the implant wires and a battery pack in my rear end and ive been given various levels to try but each time they text me for an update I answer the same 6-7 pain score.

I had a fusion L5/S1 in 2008 that has lead to nerve damage to my back, legs and feet. I struggle with pain 24/7.

I'm also still on all my pain meds, Pregablin, MST's (morphine tablets).

So I feel quite a failure why can't they take us back to the trial levels as that seems to help so many of us.

Where in the UK are you?

Regards and best wishes to you all.

Shelly xx

Hi Shelly, thanks, I'm in Essex.  Had permanent implant Sept 14 th.  trial lasted 10 days I was really positive.  Should have had full op 6 weeks later but delayed 8 months.  Can't seem to manage to get relief out of the system,  keep being told less is more so now on programme 2 3 lights.  Don't know if this means anything to you my system is a Nevro HF10.  I'm really struggling at the moment. 5 days into reducing pregabilin by a 1/3 this is one psychotic drug and of course the neuropathic pain is increased.  Anyway how does all this apply to you. You say your box is still in situ so are you switched on.  What's your thoughts on remova, d'you think they'd let us lol.  Wendy

It's so interesting how many people are saying the nevro is so bad, I had the trial in September only the nevro and I did get reduction in 1 leg but not back or right leg, they classed it as a fail. I am beginning to wonder why no other device was offered as there seems to be a lot out there. Makes me think the hospital getting a massive kick back to implant the nevro or nothing!!

Bluemilo(Shelly)

I agree with you on the trial it feels different than the permanent one, as for me I had my implanted in Sept 2015 and was in bed for 3 months as they tried everything under the sun in programming I just was so upset when a different rep put it on pulsating n it was horrible with the Nevro stimulator so I turned it completely off and told the other rep I don't not like that other rep had no personality and was god awful mean and I'm one not to take that once you are like that to me I'm on your get away from me list lol so the other rep tried another round of experiments and I was like in so much more pain I said that's it I'm done it's getting shut down, so the pain that I was complaining about before stimulator was pushed under the rug and stimulator was put in instead of checking my back pain, well after I had a steroid injection in my neck because of the pain I felt like I was being electrocuted so I called the Drs office and thereof and both said oh no there's no current going through the stimulator well after the aprn wouldn't get a hold of the Dr I ended up asking a general question to Nevro in California well I didn't know that my name came up cause I wasn't sign in to my Gmail account but I guess it was they got my name and phone number and called me so told them what happened and to my surprise like I already knew there is a current always going through the unit, because my battery never completely died and I told everyone that so they said that it can't totally for because it would take so long to recharge, so I was very upset that the dr and reps lied to me when I trusted them with my life, so I ended up getting it taken out on December 8th I just got back from the Drs office to get the staples removed so the dr said oh you're a failed SCS cause we were going to put in the St Jude's but I think there's something going on with your fusion omg I told them before they put the system in but everyone was freaking out cause I called the Rep's boss, but on top of it they didn't even do the physic evaluation and just put in the permanent one in , I think if I had the evaluation I wouldn't of gotten the permanent one done, but alot people got in trouble but I don't really care cause the should of listen to me now I'm two years wasted on a stimulator that shouldn't of been put in and now I have to start all over again with a new dr and probably gonna have to start fresh and MRIs and all that

It's so dumb they should of just listened to me 2 years ago and look were I am at now. No stimulator no Dr and still in alot of pain. Unbelievable.

Good luck and take care keep your head up and hopes up too.

Cynthia ( Cindy)

Or just maybe if the Nevro doesn't work none of them will.  Let's face it it's just a set of wires and a pulse box.  Did I trick myself into thinking the trial worked because I wanted it so badly.  That old adage be careful what you wish for, it may come true.  Surely someone somewhere is having a successful time with one of these systems.  Wendy

Wendy

Good point maybe we were so excited we thought it work but it didn't, or they do something different from trial to permanent one?

That could be it too, Nevro gets you so hyped up but my dr said the same thing.

Cynthia ( Cindy)

Ok everyone here are the questions 1. Why if one system doesn't work, why would another be any different.  2. Why can't we get pain relief from them.3. What should we be telling the reps, nurses, operators to get better results. 3. How long is the right enough time to struggle before asking to have it removed.  Surely between all of us we can become more pro active.  It's a given that we've had a rough deal health wise, we wouldn't be on this site if things were brilliant.  I have to believe people are trying to help me, they want this to work, I want to help that happen, I just don't know how. Wendy 

Well I seem to be in a forum of one at the moment so I'll just think aloud.  Why did the 10 day trial go so well? What changed with the permanent implant.?

I was still on my highest dose of Lyrica, I topped up with co-cods and paracetamol to cover the discomfort from the surgery and lying all the wiring.   The wires were switched on an pulsing.  There may have been a reverse placebo effect.  Let's face it I was praying for it too work, I wanted to come off the drugs.  They removed the trial and the pain was back.  It was a more than successful trial and I was booked for surgery 6 weeks on.  It was eight months eventually the NHS is dying here.

what I did not factor in was the constant pain of the battery, the anchor wires  which are sticking out from my vertebrae. More discomfort and two quite significant surgical scars add to that a good helping of neuropathic pain and you've got a party.  

remember pain is its own analgesia, it'll make pain to take your mind off pain.

Just done 48 hours without sleep, pain concentrates the mind nicely.  Please have a ponder on these things, see if we can make sense of this mess.  Then we can speak to the 'experts' and maybe get the right answers.

You are not in a forum of one.  You are in a forum of many individuals who share your very same concerns.  The problem(s) is you are putting your questions to the wrong people. We, more or less, have the same questions. Questions like these should be directed at your doctor. We, in this forum, are all laymen with no medical education. We have to put our trust in those who do have such education. I definitely understand where you are coming from at this point. I have had the Nevro in for 6 months. I would love to get off the Oxycondin.  The trial was much more successful then the permanent has been for me. All I can say, is keep trying.  What other choice do you have?  Good luck!  Marie

Hi Marie wasn't trying to come across as irritable just talking out loud.  I'm not sure they are the experts, there are too many of us for this to be a successful  treatment, there has to be a link.  Thanks

OK I'm going to try this again. I started a message to you yesterday and either hit delete or send. Long story short: it disappeared and not sure if you got it or it's floating around in never-never land.  What I was attempting to say, I think, is you are directing your questions to the wrong people. I don't mean to be nosy but could I ask where you had your surgery? US or UK?  I had mine done at the Mayo Clinic, which I think, is one of the top medical  centers in the U.S.  Mayo doctors thought very highly of the Nevro. My Nervo Rep just keeps adjusting it and is confident he will find the "sweet spot" that the test found. I was in to

 

I was in for a check up last week at Mayo and my Doctor tells me I'm not doing as well as most patients with the Nevro. He says, of the 30-40 patients that have received the Nevro at the Az Clinic, many have cut their pain by up to 80-90%. Just don't give up and "bug" your Doctor. Good luck!