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Spinal Cord Stimulator

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khi
khi

Has anyone had a spinal cord stimulator,it has been one suggestion for my husband who is still suffering after 4 years after his first surgery, he has had a further op two years ago and is still suffering immense pain, has weakness in his leg and finds walking difficult and now needs a stick to walk with. I am hoping someone has had a spinal cord stimulator that has had similar condition as my husband because as I understand it it is only a minor op to implant.  I think the other option is fusion which I have heard horror stories about, especially as he doesn't seem to have success with major ops.  Thanks

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  • Bungle66
    Bungle66 khi

    Posted

    Hello everyone, I have just joined up to the forum although I have been following for a while. I had my Medtronic SCS implanted last Thursday, 17th September after a successful 7 day trial. Long story short, I fell over in the snow in December 2010 scrunching my L4/L5/S1 vertebrae and following two unsuccessful operations have been left with huge amounts of scar tissue affecting both legs. I am allergic to pretty much all of the anti epileptics meds that might have helped with the pain and so at the end of my tether, scared, tired and hurting I elected to try out the SCS trial. It went sooooo well and for the first time in amost 5 years I had a pretty good coverage and grip of my pain. I cried with the relief. It's not pefect but a vast improvement on what has gone before. Since having the implant proper things have not been totally smooth running, although it is not by any means a disaster. I am in LOTS of pain right now, at both the incision site half way up my back and of course around my left buttock where the battery has been placed just below my belt line. I expect that and know that in a week or two it will start to subside. Has/is anyone else experiencing the really bad pain there? I'm finding it difficult to find a comfy position to sleep in. I have also developed a really nasty pain in my left calf that seems to be a result of over stimulation? I think I have moved the leads a little and need to be re-programmed. The stimulation seems to change on a daily basis but because I can still feel it all the way down to my toes in both legs I assume I haven't totally dislodged anything. I do get a pneumatic drill type sensation in my right leg sometimes when I'm walking. That doesn't feel normal and I will get it looked at on Friday when I have my post op follow up. I trialled both the normal stimulation with tingling and the high density, without sensation. I have to say I chose the conventional form. After having been in pain for so long I found it really difficult coping without any sensation! Crazy I know but the tingling proves to me that things are good and the machine is working - does that make any sense at all? Also before my life went awry I worked as airline cabin crew and loved to travel this beautiful planet of ours. I'm hoping to get back to that soon and the constraint of needing to re-charge regularly didn't or doesn't really fit with my lifetyle. I can say to anyone considering the trial - go for it, you have absolutely nothing to loose and it might just change your life. I'll keep posting about how I get on, my ups and downs and I might just need a little tlc and support for the times when my self confidence wavers and the pain is hard to control. Take care and good luck everyone - Graham
    • karen66701
      karen66701 Bungle66

      Posted

      All the best Graham, hopefully the pain of the op will subside soon ... its good to hear from others & what my husband may expect to happen, although I know every case is different ...
    • Bungle66
      Bungle66 karen66701

      Posted

      Hello Karen, Lovely to hear from you. I wish your hubby all the best. Tell him not to be frightened about it. It really wasn't the big deal I imagined. My trial op took about 3 hours in total and was done under heavy sedation. Basically they put me to sleep in order to fix the wires inplace and then woke me up several times (most inconsiderate!!) in order for me to describe to them where I could feel the 'sensations'. Only when they were satisfied that coverage was good did they put me back to sleep to fix everyting in place. I had my surgery in Ipswich Suffolk and there they sewed the battery onto my back. I know some hospitals here in the UK only attach the battery via a belt. He will need to be careful of the wires. On the first night (they sent me home about an hour and a half after coming too) I managed to get hooked up on my bathroom towel rail and thought I'd pulled everything out! I did yelp and it did hurt, thankfully no major damage was done! I felt really good the following day except for the pain where the battery and leads were attached to me. My leg pain was REALLY so much better. I was tempted to do too much at the beginning because I felt so good, tell hubby to REST, REST, REST and not to bend or twist. Sleeping for me was nigh on impossible. The actual real fitting of the SCS took less time about 2 hours in my case and again I went home shortly afterwards, it was also done under sedation. It was so nice not having leads hanging everywhere and not to have quite so much padding over my back and bum. The problem I have now is that I am unravelling! Get plenty of sterile plasters from the supermarket or chemist to patch things up. I am 5 days out and today my dressings really started to come loose and I am not due back at the hospital until friday. I think it will be a success overall and the pain I am in now will fade into obscurtiy in a few weeks. Some things that might help are to maybe buy a decent gripper/picker upper and some waterfree incontinence gloves for washing intimate areas (best investment I've made). I find bending and twisting a tad difficult (mustn't do it!). No bath or shower for 8 weeks, so for me washing in the kitchen sink it the only viable option. I can't bend down to use my bathroom sink - lol and of course you'll probably have to help him put his socks on. Other than that it is a piece of cake!!! Take care and all the best Graham
    • cynthia70714
      cynthia70714 Bungle66

      Posted

      Graham,

      Hi I'm in the USA and I had my trial a few weeks ago. Anyway I feel after all the frustrations from the trial like you said getting caught couldn't sleep, than the pain started to come back the last two days of the trial, told the rep for this new company we are using in the drs office, and they don't wake u up no more, they just put it in and go home, well I'm going Thursday for the real deal its called nervo senza and no over night stay just go to sleep wake up and go home if things go well, I hope it works, fingers crossed but I was getting the same thing as you with the trial so now I'm doubting it again, I will keep in touch to let you know how it goes, and best of health to you

      Cindy

    • Bungle66
      Bungle66 cynthia70714

      Posted

      Hi Cindy, Was the same for me. I didn't get woken up the second time and the procedure was much quicker, I went into hospital at 1245, had the op at 1445 and was back home just after 7pm. The surgical site is much more painful than I imagined. Where my battery is (upper left buttock) is really sore and of course everytime I move in bed it pulls as does the area in the middle of my back where the leads are. I think I can feel the leads but that might be my imagination! I find that the stim sensations move around most mornings as well but overall it makes such a positive difference and I have been told that the best coverage really starts once the leads have scarred in after about 6 or 8 weeks. At that point the reps can really go to work with programming. My device is made by Medtronic. I went for that version as it still allows full MRI scans. Will you feel yours working, or is it the high density version that takes away all sensation but needs recharging? I actually like the tingling sensations and find them quite pleasant - certainly much better than the horrible burning, revolving waterfall of constant pain that spreads right down from my belly button all the way down to my toes on both sides. Are you having one or two leads implanted? I truly hope it goes well for you and once you are feeling up to it I will look forward to comparing notes on our respective recoveries. Good luck Cindy and bye for now Graham
    • cynthia70714
      cynthia70714 Bungle66

      Posted

      Hi Graham,

      Well that's good to hear but bad about feeling the leads and battery, yes the one I'm getting is rechargeable and the battery lasts about 10 years, I can just imagine the pain with the leads and the battery, I felt the leads on the trial, what an awful feeling I kept getting stuck on my door I thought I was gonna die, I'm getting three or two leads with this nervo senza one. They used to use medtronics but changed over, feel better keep updating us. Cindy

    • Nomeds
      Nomeds cynthia70714

      Posted

      At 6 weeks now, I can still feel my three cables down to the battery/transmitter. And it. Mine is just above the waist line. Didn't have a enough butt to put it under. That bothers me more than anything, but hopefully with time, the muscles settle in that pain might subside also. For me the unit did capture 80% of effected area. The remaining 20 is still in a good amount of pain, but no meds other than Adivl now. !!!! Totally more patience than in a long time. Big plus for all @ me.
    • karen66701
      karen66701 Bungle66

      Posted

      Hi Graham,

      I know what mean about the temp one & getting caught up, that happend to Brian & caused him (& me!) a few problems. He is resting as best he can but sleep is hard to come by. He has got one of those picker upper things which we orginally brought for the fish tank ... You are not far far from us, Brian had his op at Southend General in Essex ....

    • Bungle66
      Bungle66 karen66701

      Posted

      Hi Karen,

      Nice to hear from you. My old stomping ground Southend. I went to schoold in Rawreth, Nr Rayleigh and have lots of friends down there. Sorry to hear that your hubby is having probs too. Make an appointment to see them asap, don't wait. Is the battery placed in a different place to where they marked on the day? Very bad if that is the case. Mine is in my upper left buttock just below my belt line. I can feel mine too and actually you can see it as well BUT I have to say that now I am 12 days out I am becoming less aware of it and I am used to sitting on it, although that said it is still very sore. My bum is really bruised, totally black and blue much more so than I imagined it would be and that is taking longer to heal than I thought. The funny thing so far is that I am actually taking more medication, rather than less! My dressings ruffled up every day. I was told not to remove them, just keep building up over the top. Thankfully mine came off after 7 days and they are nice and dry and clean. I was also allowed to shower on day 8 which was amazing as I had originally been told no shower etc for 8 weeks. Tell him to hang in there. I am up and down but have been out and about, in fact I am totally mobile. Too early to say if it has worked. My leads seem to move daily and I struggle to get sensation down into my feet, without being shocked to death up in my bum - lol! I wish him well, please keep us up to date. Did your hubby have a rechargable battery put in and does he have the high density version that he can't feel? Mine isn't like that but I quite like the tingling sensations. Bye for now Graham

    • Bungle66
      Bungle66

      Posted

      Hi Karen, how is Ray getting on?
    • karen66701
      karen66701 Bungle66

      Posted

      Hi Graham, my hubby Brian is not having much luck with SCS at present, had to take the plasters off as itching like mad & lot of red little spots have appeared - he keeps washing in the stuff the hospital gives you before your op which helps a bit - the reason they didnt put the charger where they drew it was because he didnt have enough flesh there apparently ... also he has a slight noticable bump on the other wound - not sure if that is right ... x ray on Thursday & seeing the surgeon at the pain clinic on Friday ...
    • cynthia70714
      cynthia70714 karen66701

      Posted

      Karen.

      You said plaster what is that? I just have some very sticky skin looking thing on my back, I go to the Dr's Oct 6th, I just feel so helpless!! I still feel pain had them fix program, but I think there is something else going on in there, I just hate pain and no sleep until you are running on empty and your body just shuts down, little depressing n down, but I'm hoping it will get better.

      Tell your husband I'm with him and his hope a speedy recovery too.

      Cindy sad

    • Bungle66
      Bungle66 karen66701

      Posted

      Morning Karen, Sorry to hear that Brian is having probs, sounds like he might be allergic to the plasters? Hope it's not an infection, keep an eye on things. Has it actually helped him with his pain? Hope so!  I'm beginning to think it was a mistake to have gone ahead with the implant but my trial was really so good. The muscles below my left knee and down into my foot keep cramping up and it si so painful. I seem to manage to 'tweek' it for a while and then the pain comes back. It's worse if I don't have the stimulator on at all though, so a catch 22 situation. I am waiting to hear back from the hospital sometime today and pray they have a solution. I love the sensation when it is working right but I can't imagine living my life like this. Currently I woud say I am 50-60% worse pain wise than pre the first op. Take care and best regards Graham
    • cynthia70714
      cynthia70714 Bungle66

      Posted

      Graham

      You are not alone, I feel the same way.

      Drs appointment tomorrow but what are they going to do? Stay positive you are only 2 weeks in, I'm taking more meds than ever.

      I just wish something would come our way to help us all for a pain free life.

      Take care Cindy and fingers crossed that you find out what's going on...

    • Bungle66
      Bungle66 cynthia70714

      Posted

      Thanks Cindy. I confess that yesterday morning I had a good cry due to pain and frustration and wondering if I had made a massive mistake. That is not at all the  usual state of affairs for me. I am usually happy and can make light of my situation. You are right, it is only 2 weeks and there is a lot of healing to be done. I did receive some benefit early on, so I know it is possible to achive. I made the mistake of looking at some 'promotional' videos before my surgery where I've seen folks running around like 2 year olds and I imagined that is how I wold be right after my op. Of course real life is not quite that clear cut! You hang in there too. IT WILL GET BETTER. Best wishes Graham

       

    • cynthia70714
      cynthia70714 Bungle66

      Posted

      Graham

      I hear you on the good cry, I had few break downs, its just feel unfair that some of us just can't catch I break, so we can always Lean on each other when we get to that breaking point, I know my dr said its a hit or miss, but trying to stay so positive, but some days are harder than others, so lets stick together and vent it out to each other, my ear n eyes are here for you!!

      We will make it out of this pain n whatever brings us down!!!

      Cindy

    • beverley82498
      beverley82498 karen66701

      Posted

      Hi Karen,my hubby is still scratching this far down the line.The GP very good gave lotion to put on.They will do a swab to make sure no infection.He had terrible reaction to the plaster & they gave him dressings called Allevyn which are about the most non agressive plasters you can get.Ask fir them.They thought he might be allergic to the battery,but thankfully it settled down.He also has a lump on the other wound,I think it's where the leads are going into the spinal cavity.nothing to worry about.I now dab good old surgical spirit from Boots on his few spots that are left & they are drying up.I think the body is desperateley trying to expel a foreign object. Tell him to hang in there,it does get better!
    • karen66701
      karen66701 beverley82498

      Posted

      Once agian, many thanks for your words of wisdom Beverley ...

      I have made a note of 'Allevyn' - I will also get some surgical spirit ... :o)

    • karen66701
      karen66701 Bungle66

      Posted

      Hi Graham,

      Hope you hear back from the hospital soon ... I think some of the problem is just not knowing what is right & what isnt. I know everyone is different & you should be patient, but I dont know how you can be & how you put up with so much ... I admire anyone going thru this, Brian is really fed up & has probably shed a few when I'm at work. He has got an appointment at the pain clinic tomorrow as well as Friday now ...

    • karen66701
      karen66701 cynthia70714

      Posted

      Hi Cindy,

      Maybe you know plasters by a brand name .. like Elastoplast etc ... when you cut yourself we put a plaster on. Anyhow, Brian has an extra appoinment at the pain clinic tomorrow with the surgeon. Good luck tomorrow hunny !! At least him being laid up he can watch all the rugby matches as we currently have a world cup going on in the UK. Sadly England lost on saturday so we are out :o(

    • Bungle66
      Bungle66 karen66701

      Posted

      Hi Karen, How did Brian get on at his follow up appointments?
    • cynthia70714
      cynthia70714 karen66701

      Posted

      Karen,

      All I know is I had a sticky stuff like skin, so when they took it off it was like a back wax, ouch, but stitches came out n can shower still alot of pain hate laying down. But can't find a good setting.

      Good luck to hubby

      Keep me posted

      Cindy xo

    • Bungle66
      Bungle66

      Posted

      Hi Cindy, How are you getting on? Mine I think is a failure. I am asking to have it removed next week as I'm worried that my body is rejecting the hardware. I don't seem to have a temperature but I have severe pain at battery site and nerve pain in both my legs that is off the scale, also a lot of weakness in my left leg. I am getting pain in the region where the leads go up my back that raidates into my chest and stomach and gives me backache unlike anything I've had before. If I have stim on my calf muscles just tighten up more and when I switch it off, they stay tightened. Stim also increases the horrible nerve sensations in my feet. I don't think it has ever convincingly reached my ower limbs. I also have developed a numbness in my right arm and hand that was never there before and I am wondering if the leads are touching something that they shoudn't be? Who knows. Anyhow I hope YOU are on the mend slowly? Take care and regards Graham.
    • cynthia70714
      cynthia70714 Bungle66

      Posted

      Graham,

      Oh my gosh, that sounds like when I had my fusion, my body rejected the hardware and had a nasty staph infection, was back in hospital and with a open back wound for 6 months with a pic line into my heart, I felt like I was gonna die, but finally it did take and the progress was painful and I can still that pain, so far pain battery site is so swollen, hate to feel it, plus I also can feel the leads, but besides being in pain and getting a little done, I so wish you went with the nervo senza, I know you wanted to feel the sensation of the equipment, but if you ever think of having it put back in go with this one, that was my biggest fear body rejecting the stimulator, I hope you stay on the forum so we can keep in touch and see how you feel with it out, so please I'll be praying for you and a fast and seedy recovery, please keep us updated, I'll give you my personal email if you want, I know we can talk privately.

      Stay positive, glad to have you to lean on and please let me know how everything feels afterwards.

      Best of luck next week keep in touch.

      Your friend from across the way

      Cindy xo

    • Bungle66
      Bungle66 cynthia70714

      Posted

      Thank you so much! I'll keep you updated with what they say. I hope I don't have an infection. Nothing to show on the outside but don't know what is going on within. If it gets really bad over the weekend I'll go into A&E at the hospital. Right now I just hurt, no shivering or temperature. Praying for you and everyone here. Chat later G x
    • cynthia70714
      cynthia70714 Bungle66

      Posted

      G,

      I hope so too, with the infection, cause the just creep on you, I'm hoping you find some answers, n praying no infection, keep touch my friend!

      Cindy

    • karen66701
      karen66701 Bungle66

      Posted

      Hello,

      Well he has an infection, so on antibiotics, had an x ray & the guy reckons it looks ok, but he is returning to the pain clinic this Friday. A positive is that he is not getting the shooting pains down his legs anymore & he has reduced the miligramme amounts he is taking in some of his pills. But he is not happy at the position of the control panel, (right on where his trouser band go) :o(

    • karen66701
      karen66701 Bungle66

      Posted

      How are you doing in the last 3 days ? - I hope you are wrong in thinking that it has failed for you ...
    • cynthia70714
      cynthia70714 Bungle66

      Posted

      Hello g,

      Haven't heard from you, hope you are doing well, pls keep us updated so we know how you are doing, miss our chat's!

      Cindy

    • cynthia70714
      cynthia70714 karen66701

      Posted

      Karen,

      Well I'm glad they caught that infection and hope he's on the mend now.

      Best of luck and thinking of everyone

      Cindy

    • beverley82498
      beverley82498 karen66701

      Posted

      Hi Karen,sorry to hear he has an infection.Hopefully the anti biotics will do the trick.Good that the shooting pains have gone,the device must be doing it's job!Also,very good that he has reduced some meds.What needs to be remembered is that,1 he still has original pain,2 he now has pain from 2 wound sites,3 he will also have new pain from those protesting muscles that haven't had much excercise for a while!He's doing great 😊I got hubby some loose fitting jogging bottoms to wear,not exactly smart,but anything that reduces pressure around wound sites.He still wears these around the house & has gone up a size in normal trousers just to keep pressure off.Also a seatbelt extender for when he's driving - every little helps.He is doing well,just hope the infection clears soon. Bev
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