Spinal Cord Stimulator

Debbie3163,

I hope you feel better, anyway I was wondering what is your name of your SCS? I'm getting the nevro senza, which here in the USA is the newest one, the last model was the medtronics which makes noises and and you would feel the shock I heard. The one I am getting has no noise or feeling of being shocked. But I do feel bad about how in today's technology they can't come up with something that can take care of pain in the upper and lower body, I wish you pain free days, how does the weather effect you? Can you tell when the weather is going to change? I can tell when its gonna rain or snow 2 days before, my back starts killing me. And I'm in bed. I am hoping for some relief, take care. Cindy

Hi Cindy, my device is a rechargeable medtronics. It doesn't make a noise or shock me though thank goodness. I am affected by extremes in temperature, but then I was before the SCS too. I have extensive nerve damage which manifests as a burning sensation, pins and needles and paresthesia. I have to be careful and limit what I do physically still, if I have a busy day, I plan a rest day to follow. I still take a lot of pain relief, including morphine, to help with my upper body pain, and yes, it is frustrating that there isn't a device that covers both areas. It's not perfect, but it's better than it was. It's just about being sensible really. If there's something I really want to do, then I have to weigh up the possible consequences (usually an increase in pain) and decide whether it's worth it. I'm sure you have the same dilemmas!

Hope you are reasonably pain free very soon. Debbie

Hi Debbie,

Yeah the temperatures really kill me, my back and both legs that's why I decided to do the nerve stimulator, figured it's worth the try, can't hurt to try. Right now we are getting really bad rain in the USA (connecicut) near new York,) it I'm trying to get comfortable but my meds are just not doing anything, I've been on the pill form of methadone for 16 years now because they say it blocks the pain receptors which is the only thing that works, plus with Valium zanaflex and oxycodone, which I went through some serious times back in April one of the aprns thought she could just switch me off my meds it was the most painful 2 months of my life and another aprn changed me the following month and omg I wanted to jump out a window I was in such pain kept calling the Dr's office til I got a hold of the Dr. And he stayed after hours for me, and now that girl got yelled at by the Dr stating big red letters staying no one take this patient off her medication per Dr. T I was so happy, aprns in his office think they are drs when they are not, I'm not knocking aprns but I think they should contact Dr first before doing what they did to me, I was in such pain and evey day I called the office and was just blown off, so I am hoping the stimulator will help and they can cut me down on the meds, fingers crossed 11 more days, nervous but excited at the same time...thank you for your input Debbie

hi debbie just came across this message and was wondering how you are getting on with the SCS a year on? im considering getting one fitted as like yourself i have severe nerve damage having had 2 total ankle replacements on my left ankle and tendon decompression surgery, and im at my witts end with the pain. im also on morphine but doesnt do anything to dull the pain. would be great to hear any feed back from you. hope you are well. wayne  Liverpool England.

Hey Wayne, it's Marty in Texas and just sharing my thoughts if that's ok....I went through the trial version of the SCS and it definitely helped with my back BUT it did zero for my feet, and they're kinda worse than my back, so................ The dr referred me over to a dr who does the DRG (Dorsal Root Ganglion) SCS and he said he thinks he can help both my feet and my back so I'm going to give it a shot..Pretty much identical as far as units go (( will bew same St Jude unit )) but electrodes are put in a little different place and they're a tad wider...He also advised me that (( I cud be off on description..)) that St Jude is coming out with a new unit in about 18-24 months that will have 2 more "holes" in the unit to attach 2 more wires for even more relief......but I can't wait anymore..Severe nerve damage in both feet and tore up back...But wanted to toss that in here in case anyone's lower extremeties are chronic...Oh, and the trial SCS did help from back to knees but wouldn't go lower....Hope that helps and hope DRG will help me...God bless ya !

So just checking if you decided to get one or not .... My insurance declined to pay for my DRG so I'm not sure what I'm going to do...Severe nerve damage in both feet is my major problem with the back coming in 2nd...As I mentioned, the SCS did work great for my lower back pain but I've gotta get my feet better before investing too much $$$ in my back..It's rough but feet are killing me and the VA here doesn't have any answers....;

here is my 1st reply a couple weeks ago;

Hey Wayne, it's Marty in Texas and just sharing my thoughts if that's ok....I went through the trial version of the SCS and it definitely helped with my back BUT it did zero for my feet, and they're kinda worse than my back, so................ The dr referred me over to a dr who does the DRG (Dorsal Root Ganglion) SCS and he said he thinks he can help both my feet and my back so I'm going to give it a shot..Pretty much identical as far as units go (( will bew same St Jude unit )) but electrodes are put in a little different place and they're a tad wider...He also advised me that (( I cud be off on description..)) that St Jude is coming out with a new unit in about 18-24 months that will have 2 more "holes" in the unit to attach 2 more wires for even more relief......but I can't wait anymore..Severe nerve damage in both feet and tore up back...But wanted to toss that in here in case anyone's lower extremeties are chronic...Oh, and the trial SCS did help from back to knees but wouldn't go lower....Hope that helps and hope DRG will help me...God bless ya !

 

Hi marty thanks for getting in touch. I've decided to go ahead with the implant, I have another meeting with the surgeon in Liverpool England in the next few weeks to discuss the finer points of it.I don't think there is any other option left for me now.I really appreciate your imput marty.I'll let you know how it goes in the coming months.cheers wayne.

Nomeds,

Which one you on? They said I should get at least. 30 to 50% relief so fingers crossed

Mines made by Boston Scientific,  a company out of California. Its called a precision spectra unit.  It continuesly shocks the nerve's that the paddles are tied off to in my back. My situation is mostly right side so four paddles were implanted. The transmitter is just above my belt line on the right also, about half way to my ribs.  I do have control of how much impulse it has, I  turn it up until I can feel it, then just lower about  2%.  Only time I feel it is when I sneeze or cough real hard. Constricting of the muscles on the paddles is why that is. I'm told that will stop after it gets sufficient scare tissue built up around it.  The word shock sounds bad, but it's just a tingle really.  

Ray

Wow nomeds,

I asked the rep for the nevro senza and he said the permanent one I will feel no sensation at all. Because discussions like this forums say the same thing, and that's why I was so hesitate to get it done til now, they said this nerve stimulator you won't feel anything but maybe a little pons and nieddles ilf turned up to high, I am not putting it down cause I want to stay positive because of all the years it took away from me. Not be able to play with my daughter while she was growing up. And now I have 2 grand babies that I see once a year and love to play with them but miss out because of pain which turns into migraines. So fingers crossed this will work!! Staying positive Cindy

Wishing your husband good luck Karen! Now I'm at 5 1/2 weeks post op, did a few hrs of light duty work outside yesterday. Boy had my muscles turned to mush. At least it was sore muscles and not hurrendus pain afterwards! Slept sound last night!

Ray

that is EXCELLENT news !!! - I have passed your comments on to my hubby who is starting to 'freak out' at bit now at the prospect ... I know everyone is different with different degrees of success, but all we can do is hope for the best ... may I ask how long (approx) did your op take ?

Good luck to you and especially your husband, I get my permanent one on Thursday, fingers crossed here, hopefully somewhat back to a normal some what pain free life, I'm nervous and scared but being positive as I can be that I will to get some of my life back fingers crossed good luck keep us updated!

Cindy USA

Thank you Cynthia & all the best to you for Thursday ... :o)

Like two hrs start to finish. First I was aware of anything I was in my hospital rm. just have a 2" scare in the center of my back, about a 31/2" one down where the transmitter is. Somehow they fish the leads under the skin to the transmitter. I only had to stay one day in the hospital including surgery

Good luck and God speed recovery!

Ray

Wow, they are sending me home in a few hours in the USA the do it as a outpatient service, I hope Thursday comes quick, my nerves are shot, plus I feel worse after the trial, I am in so much pain ieven on meds, I can say I am a bundle of nerves.

I wish you all the luck in the world hunny ... I will be off line for a few days after Brian comes out as I 'blog' from work - will be back next Tuesday ...

Many thanks for the info Ray ... I am assuming you are in the UK ?

Thank you Karen and the same to your husband hopefully we can get our lives back with some pain free solutions. Take care, I'll keep in touch and let everyone know how I did, Cindy

Good luck Cynthia. I promise it will not be anywhere near as bad as you are expecting. I am 5 days out from my permanent implant and I wasn't kept in overnight for either my trial or the 'real' op and while it has not been entirely plain sailing, it really has made a world of difference to me. Fingers crossed. I have printed my abbreviated story below. All the very best Graham, Suffolk, UK

No, buffalo ny

Hi Karen,

I had my permanent SCS put in yesterday, oh my what pain, whole entire body hurts especially the incision's site, thank god I spoke to Dr. Before surgery so he could mark out where the battery was going, left side I sleep on my right or back but of course I'm not on my back, I know they all told me of course it will be sore, but it feels almost pretty close to the fusion, I only get up to go to bathroom, I can't imagine what happened to me in the O.R. the needle wasn't in right in my arm, so the meds were not going through, I am so glad the Dr didn't start until anesthesiologist signalled I wasn't out, I just can't believe the pain I am in, I hope your husband is doing better than I am, give him my best and to you take care updates when I can, thanks to all the positive feedback from each and everyone hugs to all Cindy USA

Hi Graham,

I've had mine going on 5 days and I still feel horrible, I can feel the pain done my legs but is alot worse, I don't know if I got an infection they basically pushed me out the door so I don't if some one can put clean bandages on, because my appointment to Dr's office follow up is a week away, any suggestions? Anyone what would u do? I feel like my bandages are soaked, like it feels wet... So lost in confused

Cindy

Dear Cindy,

Sorry to hear you are having problems. I don't think it is right that your bandages are feeling wet. I would certainly get someone to look at that asap. Don't leave it. I was told that if I noticed ANY leackage to seek assistance immediately. You don't want an infection to set in. I am still getting leg pain, although I have turned my unit down a little and that is helping somewhat. I was allowed to remove my dressings completely (from my behind and small wound where lead went in on my left side) on day 8 and and the big one from my spine on day 10 (yesterday). I was also given permission to have a shower from Saturday. My wounds are thankfully all nice and clean and healing well. They are VERY sore though and I am quite badly bruised on my bottom. Do you have anyone at home who can check them for you, or any friends you trust to take a look to see if you are leaking? All my dressings started to fall off quite early on and the advice I was given was to just build up fresh ones over the top, rather than remove the original dressings. I wish I was close to you, I'd try and give you a hand. Please let me know how you get on and do try to see a nurse or someone just to check all is OK and out your mind at rest. Take care Graham

Thanks graham,

Yeah and my bum where the battery is the swelling is going down but I can feel the battery, which I thought you wouldn't feel, the long strip is the one that feels wet, the battery one too, and it hurts so bad ive been sleeping since the surgery, I will be texting my daughter and pass out with phone on the bed, I run low temperature 96.1 ish so the other day it was at98.9 thats like a fever for me, I'm charge and that hurts so bad feels like a bruise there, I'm hanging in there gonna to call drs office today to see what to do.

Thank you for the reply thought I was nuts.

Take care and I will keep you updated.

Cindy

Hi C, It deffinately doesn't sound right to me, make that call when you can (where inthe States are you?). Although I have been a lot of discomfort I haven't had to stay in bed at all. In fact for me laying in bed has been the most uncomfortable of all and I was even able to go to the shops (just for a ride, not to actually lift anything) 2 or 3 days after my op. I go for little walks around the garden and up the country lane I live down. Maybe I'm doing too much and need to rest a little more. What I have found that worries me is the pain in my legs at night when I have the unit switched off is really bad. My legs seem to throb, I even feel it in my tummy. I am wondering if that is due to over stimulation by the system and if it is likely to subside in the weeks ahead. Does your daughter live close by, can she pop over to take a look at you? Take care and look after you. G

No that's the sad part I'm in Connecticut ( new York) and she's is in nex Mexico ( near Texas) very 3000 miles I think to fly there, did it twice in the that miserable condition twice thought I was gonna die so much pain in the friendly skys. But she might be closer next year thank good

Take care and I will keep you updated

Cindy

Hi Cindy,

You should get back to your doc's ASAP & get that checked out for sure ! ... As for my hubby, he is not happy as the charger device was supposed to be put in his back, (I was there when the woman drew it on his body) but he is sure it is in his backside instead, it feels hard. That is just ridiculous as he has no flesh on his bum & he also discussed it with the surgeon at his pre-assesment appointment. He is not due back at the pain clinic until the 9th Oct. But he is in so much pain he may contact then beforehand. Also have to keep changing the dressings as they keep rucking up :o( ...

Morning C, How did you get on yesterday? Were you able to speak to the doctor and have you been able to have someone look at the dressings? Hope you are feeling a little better today. You live in a beautiful part of the world by the way. Before all my back issues I used to visit the New England area most years about this time to see the fall colours. Maybe if all goes well I can go again next year! Take care and bye for now.

Hi Karen,

Yeah I was happy where they put my battery, its kind of on my back n bum but I have no bum, trying not to laugh I have a tiny one with no meat an as the swelling is going down I can feel it, had a real bad day yesterday, my b/f kind of he still looking lives with me found his father passed away, and I felt awful cause I couldn't be there for him, he stayed at his cousin's house, it such a shame he was a good guy and young 66, he always had a smile on his face even if he was in pain, so I didn't sleep well last night and I woke up with this awful pain down my right leg...I just not to sure this was the best for me, but I'm going to try before I tell them to take it out. I just can't believe they don't tell you anything before hand, best wishes to your husband and you. Take care keep me updated. Cindy {hugs}

How are you doing Cindy? I was sorry to read of your partners loss. It doesn't rain but it pours! Take care Graham

Hi Graham,

Not so great, my battery where the put it is in the worse place, its kind of my waist line but my behind as well, and it just keeps swelling up, I had that unbelievable pain down my right leg and now its the battery site and the back when I move certain ways I can feel everything like the wires, I hope I'm not going crazy, but its been a little depressing here, hope you are coming along, we are just 8 days of each other so you have a week more than me, is it getting any better for you? I can still feel the pain down both my legs and back, I'm praying I don't have an infection or something went wrong, keep in touch since we are so close to operations dates it would be nice to hear how you are doing.

Take care Cindy p.s another sleepless night here

Hi Cindy,

Hope you are not overdoing it ... I think Brian did that a bit & was in so much pain he called the pain clinic. The lady who liaises with the patients was very good & rung twice, sceond time after speaking to the surgeon. She said it was perfectly natural what he was going thru but you need to rest, rest & REST again (as has been advised by others on this blog) ... this is not a sprint but a marathon ... I cant keep an eye on him as I have had to come back to work but he is climbing the walls (not literally of course !!) - not getting much sleep & trying the different programs, hopefully you are managing to do the same ... all the best to you, Karen x

Hi Karen,

No I've been literally not doing much but staying still in bed alot, only to go to the bathroom, not much of an appetite at all but staying hydrated, I just don't get it, and trying to get comfortable is crazy, one night I rolled on my back by accident and it was such pain, I keep a pillow behind me now so I don't roll. I just want this to be at least comfortable, called office no openings have to wait til the 6th of October which I think is nuts. I'm taking more pain meds than ever, I just hope I made the right choice. Take care of the husband and tell him he's not alone.

Cindy

Sorry to hear what a rough time you're having. It is much more difficult than I was anticipating. I am on more meds right now than before and I just cannot seem to get the stimulation into the correct place. It feels like it is jumping all the time - nothing is smooth. If I am laying still and not moving at all I can get the most incredible pain relief but the minute I move or walk around, then wham and this pneumatic drill goes off. I have terrible leg and feet pains at night that I think are due to overstimulation. I switch my unit off overnight, maybe that is where I'm going wrong? I can't face speaking to the hospital again this week, so will wait till after the weekend and then see if they can do anything for me next week. I do still think it's been a good thing to hav it done and I still have high hopes that things will settle down. We have had pretty major surgery after all and it is bound to hurt us. I think Karen is right we must REST. I know I try to do too much and then pay the price for it. Take care and look after you. G

Hey Graham,

See they didn't tell me to turn off my stimulator at all, just charge daily, I definitely need to get in touch with the representative of the company who tells me what to do with the stimulator, I didn't think of that, he didn't tell me much, only contacted me once since the surgery, so first thing tomorrow will later its 4 am here. Around 9 I will ask him about that or maybe I am on the wrong program. I'm wishing the find the solution soon. Thanks for the talk Graham.

Take care and rest up too, take care and talk soon.

Cindy

Im sure you are not supposed to turn it off, & Brian puts himself 'on charge' every day ... He says the wound areas are itching like HELL !!! - which I think is a good sign .. (costing us a fortune in plasters ;o) ...

Yours is a bit different to mine in sofar as you have to charge up. Mine isn't like that, so it might be different. I wish I had a rep of Medtroic staying here with me to spend as much time as necessary getting me right - lol. I've just walked out to the dustbin to get rid of some rubbish and I have a small step I have to go up to get to it. As I raise my left leg, I get almost shocked to death!!! I know it can't and won't hurt me but it does make me jump. I really want to hear from some people who are past this stage as to what I should be feeling right now and whether things will smooth out with time? Try and get some sleep C and take care. Nite.

hi i have been reading all the comments on here and just wanted to ask if any of you had a lot of forms and questionairs from hospital after beoing referrd for spinal stimulator. ? the forms ask a lot of mental health questionsas well as the amount of pain you are in, i am worried about the answers i give incase they decide not to give me the stimulator trial. I have had the flexibal spinal fusion 2008 for damaged L4 L5 and S1 discs. I have been in a lot of pain for mlast 4 years and uncomfortable since opperation. I had MR! scan recently but dont need further surgery but the spinal cord stimulator was recomended, i was referred to the nurological department who have sent me these forms, bit confused why need to fill them in when they know my medical notes, they have also asked GP to send full medical history, is all this normal or are they trying to wriggle out of surgery to save money? any advice would really be appreciated.

Thanks Julia

How is he getting on? His and Cindy's are different to mine. Mine is not rechargable and I have been told that in order to conserve battery life (about 5 years) that I should exoeriment with turning it off at different times. I can still get a theraputic response for upto a couple of hours after I switch it out. For me the tingling continues. Brian probably has the HD version where he doesn't feel any sensation? I'm beginning to think I should have opted for that! Take care Graham 

Karen,

Oh my gosh, that is way to funny. I thought I was the only itchy crazy one, I just want to scratch the hell out of mine too, ha-ha and I get yelled at like a little kid. It is itchy...ugh

Cindy

Graham,

Wow I give you Credit on that, that shocking would drive me nuts, it reminds me of the tens unit they had me on for years. Well take it easy stop getting shocked, it hurts to laugh. But needed it.

C

I will ask my husband tonight if he had to go thru those particular hoops Julia .. are you in the UK ?

yes in uk and nervous about all this as some of comments on here are not positive about the procedure thank you for your reply

G,

Yes we just got the nervo senza here in the states, they used to use what you have, is it medtronics? That's the one that gives that sensations, I was happy to wait for this one, it has a ten year battery life. I'm so sorry they didn't ask which one you would of wanted.

Oh by the way no sleep here still its Oct 1st 7:30 am, I wish I could just get an hour of shut eye ha-ha probably won't happen.

Talk to ya soon.

C

There is a guy on here with the nickname of 'Nomeds' (which says it all really) & he is 6 or 7 weeks down the line from his SCS op & he is just starting to feel the benefits - & someone commented on this blog that all the people who are feeling better are out having a life now ... LOL !!!!

Hi C,

Brian has got the Nervo Senza equipment (along with a snazzy black bag holding all the gubbings) ... he has also got a card which he now has to carry with him at all times & I am gonna get him a medical bracelet advising of the SCS, & did you know you cant go thru a metal detector now at an airport ? Hope to have a holiday next year, (we got married last year in Kefalonia) .. hoping to visit another Greek Island next year :o) ...

Karen,

Boy do I hope so, I've been on so many opioids I can't remember them all, they found out 20 years ago the pill form of methadone helps with pain receptors so I've been on it since and still on it, plus oxycodone Valium something for the arthritis can't spell it ha-ha I've been taking more meds now than I did before this surgery, it sucks sorry but when u want a normal life you get so excited, but the Dr did say I may have to still stay on meds.

not happy cindy

Karen,

Yes they gave me that too, to funny, plus I get the card in the mail and if I fly I have to go off to the side and show them the card and hopefully they let you pass if not the said to go thru it real fast.

Cindy

thats sounds encouraging im looking forward to getting life back so hope i get to have the procedure

Yup even when it works, it's like taking a pie, shade in 75%, that's area of pain has captured. The remaining 25%, hurts just as bad as before. Life's a little more tolerable. Waking up n getting up for the day is possible. Lol

You are giving us a bit of hope ... My husband still in pain & VERY fed up !! Complete bed rest is not something that comes easy to him .... next Thursday he goes for an X ray & sees the surgeon again Friday at the pain clinic .. fingers crossed the wires have stayed in place !! :o)

Hi Karen,my hubby had perm Nevro fitted at the end of May.We r in UK.Something to remember is we were told to think of his two leads as 2straws in water.First 3 weeks straws in water,2nd 3 weeks straws in ice cubes,after 3 months straws in solid ice.It is very difficult not to bend,stretch etc,but they tell you that for a reason.We were told that hubby's leads were perfectly placed & the rest was up to him.I have nagged him not to do this & not to do that,but he's a man!Anywayhe has less pain than before,back pain is down to 4from 9 Still pain in leg down to 6 from 9 .He can now walk a little bit without a stick but still has a scooter for getting around outside.He hasn't reduced his pain meds yet.They have had major surgery which takes about 6 months to get over they tell us.He sleeps a lot & Nevro came to the GP surgery to reprogramme the lead for the leg which has helped abit.He gad a lot of problems with the wound site where the battery was inserted with lots of fluid coming out yuk!Nurses at GP surg dressed it until after about two weeks it dried up.They said he couldn't shower until wound sorted.He washed his hair in the shower wearing a waterproof poncho bought in Italy on holiday years ago lol ! hubby never expected to be able to run around & turn cartwheels & does not regret having implant.Hope this helps.

Hi Beverley,

LOVIN the analogy of the straws !!! - I will tell Brian about that ...

I am the same as you & have turned into a right old nag ... even this morning when I left for work, I said to him, 'dont do anything all day, just lie down' & he says back 'I know, I know, I'm NOT going to !!!' ... he cant have a shower yet ... our dogs are starting to complain about him ... LOL !!!! - please keep in touch as will I with any progress ...

Karen,

I hear ya, but the Dr. Did say it to me to Karen that it takes awhile for it to work, and plus if it works, so its a chance, I took the chance. So please tell hubby to just stay positive and rest. I hope it goes well for me too. I had my controller turned up I felt better for a bit never went to sleep and started cleaning I did crash for a bit( 2 hours) but up to pain again, so I'm just gonna take it easy and see where this go, I have to say i sure miss the shower. And I even told my rep is it two weeks with the dressing which is crossing my fingers for no infection. So stay positive I'm trying too. Keep in touch.

Cindy

Try not to do any cleaning .. let the place go to pot !!! - can you see the note from a lady called Beverly ? - her analogy on the op is very good - if not I will pass it on to you ... off to lunch now ... speak later :o)

Lol,

Yes Karen, but u get moments to do stuff cuz u feel good . lol I will take it easy.

Cindy

hi:

Tell your husband that he won't feel a thing as he will be put out.  That's the best part.  Yes, there is pain afterward at the placement site as there has to be a means to insert the unit.  After a few days, the pain will ease up.  There will be a slight soreness and over a short period of time, that will subside.  My op took about 3 and a half hours as an outpatient in a hospital which of course includes prep, procedure, and recovery.  As long as you have a good doctor, there should be no problems with the procedure itself.  You will be briefed on how to use it and the package should also have a detailed book and a video.  All are very helpful.  You also have your personal consultant who will help with the programming of the unit and of course teach you how to use it.  All I can say is good luck and wish you and your husband well.

So you are happy with your SCS? My husband had trouble with the initial placement. It must have inflamed some nerves. They had to go back in and reposition the paddle leads. It's been 3 1/2 weeks and he's just beginning to feel better. Hopefully by Christmas it will be better. That would be a great gift.

Hi cynthia:

I have been following the posts on SCS and I had a stimulator trial and permanent placement.  It only worked in my legs but was hoping it would work for my lower back which is the most painful.  All was done as an outpatient but  you are taken care of as if you were inpatient  The trial was done in a surgical center and the permanent one in the hospital.  Needless to say, the unit did not work as I expected it to.  The unit itself looks like a pacemaker and the battery is supposed to be in the unit itself.  That is what I was told.  It is non-chargeable and has to be replaced every 4 to 5 years.  So, no matter how I look at it, it's going to come out.  The placement of the unit went well and yes, I was in a lot of pain during the first few days.  My unit had to be programmed a few times as it was unstable.  If I were lying down, the buzz was more or less consistent but everytime I moved, the intensity changed and it became stronger.  I was always trying to adjust the unit but still the intensity varied.  I got so disgusted with it, that I just plain turned it off,  No stimulation now,  I discussed with the doctor where I live now and it is recommended that it be taken out.  I also asked him if there was another unit that is a lot better than this one.  He did say that there was a new one and many times better than the one I have.  I am thinking about it and looking up video's on you tube with patients telling like it is.  Fortunately, it is non biased.  I looked into the manufactures site and watched the video's there too.  There were about 6 patients and all said it is just wonderful and took away their back pain.  Not one negative review and of course I expected that as negative video's would not be shown.  Typical advertising.  I cannot put the manufactures site here as I did previously and the monitor deleted it.  You can find out more about it as most pain doctors would have that information.

Your case is a lot different from mine as you being in a lot of bad pain and movement is very hard for you.  I don't know how long ago that you put the unit in but I would imagine the pain of the incision site would be healing.  There is also a large lump on my right side as I can feel the unit.  I can sleep on it though.  Personally, I am not happy with the SCS because it is no use having it if you can't use it.  What bothers me most is that many doctors  and mfg reps give you the reason why it will work and how happy many patients have it.  That is a bunch of bull.  The cost is extreamly high as mine with the trial and permanent one cost $200,000 for a 3 hour stay in a surgical center or hospital.  I had insurance so all I had to pay was $150.00.  I am on Medicare.  When I moved to Seattle, I had to change insurance companies and I would have to pay 20% co-pay of what the surgeon, anetheiseologist, and hospital stay which is rather costly.  Even if the doctors are paid 60% of it, then I would still pay 20% of the balance.  20% of $120,000 and you see what I mean.

Meanwhile, I do hope you can see your doctor soon and get things done for your benefit.  I do wish you all the luck and next time, I want you to say everything has been taken care of.

Hi Cindy and no I am not happy with it.  It has been turned off 6 months now.  What a waste.  The wonderful things that they say about it doesn't hold water.  It's like anything else, sell and doctors make more money.  Unfortunately, this is what medicine is today.  Exhorborant prices and sometimes not enough patient care.  This I know because i have been through it.  I also had and still have great doctors who cares.  Personally, I really have to think about doing this new stimulator.  What I would do is go through a trial once again and really evaluate it.  If I decide not, then my doctors recommended medical marijuana.  That is costly as well for certificate, exam and the pot itself.  There is an oil based product you place on your tongue which is supposed to work quite well.  If the price is too high, then I'll just go back to Morphine and Oxycodone.  I tried to wean off it but I get withdrawl symptoms.  I also would be in a lot more pain.  Where do you go from here, who knows!  Well, thats it for now and take care and please tell me what is happening with what you are going through.  I hope for the better.  By the way, you responded to me immediately after I wrote to you. 

Hi Mel,

I live in Connecticut and I also heard good things about my SCS from the rep went on website same thing but I did see the rate of no effect, so I took the plunge to do it, but omg I can feel around the battery shrinking and it hurts like hell plus its all bruised around it, when I have to charge I have to lay on my back and the pad for charging makes my back hot but I can't feel it cause I have no feeling there, cause they put it in the same spot the took for my bone graph for my fusion and an ganglionectomy which didn't work but fixed the burning sensation I was having, so now I have a dead leg, I can't feel from my left butt check to my foot, I'm so fed up with the rep saying give it time can't keep changing my program my nerves have to get used to it. Bull this is just not working out for me I'm actually in more pain plus I'm taking more meds than ever, tried to go walking around the grocery store couldn't do it, I was actually sitting on anything possible lol not funny but I had to just get what I really needed leave the cart and go home and laydown, its getting so frustrating I really want to take it out its been 3 months it that's what they told me it would take to heal, so basically I'm pretty much bed ridden and don't want to go out at all knowing that if I go out I have to have my meds on me cause when it flared up omg the pain was so bad I literally started to cry in the store, I felt so embarrassed something they said would help me isn't doing a thing, I have a appt. With my pain management, which that's what they throw you in when the neurosurgeons give up on you, so your in palliative care, which means make you feel as comfortable they can get you on meds. So frustrating don't see the doctor I get to see all APRN's which every month I go its a different one. You just get so upset you want to just throw in the towel, I do want this out a friend from here told me about another procedure which I'm gonna ask whoever I see ask my doctor about, its like the SCS but helps for the nerves its closer to all your nerves in your spine, I looked it up it sounds a lot better than what I have now and I think that's what I need since its all nerves that is causing my body to be all hurting, I walk with a left limp and I get stared at. People don't understand what we go through day and nights we can't sleep and your so tired you finally drop from exhaustion. So inbox me so I can give you the new one that's finally come to USA soon.

Take care and hopefully some pain free days!!

Cynthia(cindy)

Mel,

Yeah I forgot to say I also have medicare on disability, plus I'm on state as 2nd insurance cause I can't afford to live off what they give me, Connecticut is so damn expensive, I need somewhere warm not rainy and snowing ugh....the sad part is that my back can tell me a few days before bad weather lol I'm the weather person...my trial and surgery was about the same as yours, if not more, I couldn't believe the pain was when I woke up, the place I went is a surgical center and its like cattle being moved in and out. It's so sad you get your hopes up and boom crashes right in front of you, I was trying to stay so positive, but with no luck of course, I feel like I took 5 steps back.

Stay in touch

Cynthia( Cindy)

Mel, My husband had the new approved 2015 Nevro Stimulator put in a few weeks ago and it had to be turned off 4 days post op because of the burning pain it caused. He sees the doctor tomorrow for next steps.

Lisa,

Is it in the battery site and down that leg?

Cindy

The pain is mostly at the battery site and it isnt even turned on. He has had an issue with burning pain down his let prior to the implant. This device seems like a big waste of time and money.

Yeah I feel the same way, was of sleepless nights and more pain here. When you see your doctor again let him know cause I had it and it was my nerves they got cut by the disc exploding, it was the worse pain ever it felt like someone had a torch under my foot and it traveled up my leg, my 2nd Dr tried the ganglionectomy to see if the nerves would reconnect it didn't work just left me with no feeling down the leg, drop foot and very hard to walk, I have to think while I'm walking. A few times I actually fell due to the carpet, floor or stairs I didn't pick up my foot far enough, still alot of pain but its in the bone very hard to explain, cause of the no feeling in the leg. It does suck but at least I can some what walk and I'm not in a wheelchair as one Dr said I would be by the time I was in my 40's, I'm doing my best not to end up in one, I do use the carriages at the stores that are electrical scooters. I can barely shop now, this scs was a big waste and more of a mess for me.

Best wishes to your husband and I hope he feels better soon.

Take care

Cynthia (Cindy)

I am so sorry to hear this. I have a feeling that there are going to be a lot of unhappy people after getting suckered into getting this device. They told my husband he would be back to work a week after and off pain meds - Ha Ha What a lie.

Lol yeah that told me I wouldn't be on any meds too. It's a joke!! And the reps are mean...haven't heard from him, so I'm just gonna tell them to shut it off and take it out, I'm done with this feeling...

I had scs full inplant rechargable stim 5 months ago and had fair results in the begining but soon had unit on full 3.7 full time and the pain soon got back to near pre opp levels, i was realy hoping to get off or lower levels of morphine by now, some hope,

But how i am trying to manage my pain now is trying to use a lower setting on ( SCS) and meds in the day and putting up with the pain and only using high setting (SCS ) along with pain meds and 75 mg of amitriptyline at night. Somtimes i get three hours sleep on a good night, i have tried marijuane ( street bought ) and although i got high and slept better  i woke almost paralised with pain from sleeping in a bad position, not a good idea i think, i hope you find a way to ease YOUR pain, i say your pain becouse all our pain is pearsonal. 

​Also like you, the lowest i have felt was when in a store i froze in pain unable to move or sit, i didnt know wether to laugh or cry, i did both!!! so much for being a strong bulky male.  

Antony,

Lol I feel ya on the sleeping thing, I'm up every day with very minimal sleep, I feel like I am a prisoner of my own house, I have a fear of going ok. I have to get my mood way up and I'm like I can't do it. I'm getting so much more pain with this thing and now they want me to decrease my meds oh hell no!! I'm in pain!! Hello?? These drs I should say PA which can't make any changes but try and tell you to stop taking your meds before they just cut you cause drug addicts are killing them self's I'm like why should I be punished when you should know what these people are doing, I am in pain and these people ruin for us. Sometimes I just shake my head like I'm getting in trouble cause you can't tell who's abusing and who isn't,? Come on, I can sit in my drs office and pick them out by looking at them, call them in for a drug screening, I'll would go and my meds are there in my system, no illegal drugs, so they need to get their crap together lol

Thanks you made me laugh a little, hope you get pain free or evened out

Cindy

Cindy 

I just found this discussion and wanted to follow up with you regarding your SCS. I am 2 weeks post-op and I am doing well. Still have surgical pain. They turned my unit on 1 week ago and I  have  no nerve pain. How are you doing?

Michael,

Hi my unit went off by its self and I am happy that it it did go off, I was in so much more pain with it on that I was in bed for 3 months, so when it went off I was more out going, I did not want to get out of bed or even take a shower the pain was incredible I was starting to get depressed I now want the unit out, I was told that there is a dorsal root gangelion stimulator in the UK and in the USA its in a trial period I wish I waited for that one because of my pain is all nerves and the failed fusion. Trial wasn't long enough and felt like I was being pushed into it. Honestly I wished I really waited I never want to be that down ever again. The pain I was having was going around my whole back and sides to the point I would have to take my time just to go up n down stairs, and of course bathroom on first floor. I wish you the best and make the decision if its for you or not.

Good luck

Cindy

Dear Cynthia, bless your heart. I feel so bad for you.  I have been stalling getting the Nevro because the doctor (in Scottsdale, AZ) won't answer any questions. He says read the pamphlet the the website.  He is very rude, so I figure, well, if he's this way now, what if there is a problem?? So, I got a couple of sympathetic nerve blocks, the first at L4 which helped with the neupathy in my right foot for about a week! I was so happy, but when I went to repeat it, they had not documented anything, and so they tried L3 this time, which barely had any impact at all. So, I'm waiting to see the pain doctor again, and I'm thinking I'll have to repeat L4 before they will "burn" the nerves. I've never had that procedure done before. I've had 2 neurostimulators. The first one helped with my legs quite a bit for about 2 years. They had to remove it when they fused my back (L2-S1), and I got it reimplanted last Dec, but this doc didn't put it in the right place, and it's not working. I heard that the battery for NEVRO burns.  Is that true? Does it burn your skin or just feel hot or what?

 

Cindy

I'm sorry to find out that the stimulator didn't work out for you. I hope the other procedure will give you relief

Cynthia. If you are in the USA, you can have the store deliver to you for about $10.00.  Good luck.

 

Bungle66,

If you are using the neurostimulator - I have found that over stimulator is definitely a problem. I would suggest turning it down to where you can barely feel it.  Hopefully that will help you!