Spinal cord stimulator – questions

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This topic contains 82 replies, has 11 voices, and was last updated by  PaulT_99 1 month, 3 weeks ago.

Viewing 15 posts - 31 through 45 (of 83 total)
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  • #46013

    Sarah
    Participant

    Hi Paul
    They had program 3 on cascade to start, is that the same. My feet are so sensitive it was too powerful. Felt they were in a vice.

    #46144

    PaulT_99
    Participant

    Hi all,

    My recovery has been well and living with my SCS every day and it is working great.
    Now fully off Tapentadol.

    Bit of an odd thing i have noticed this week with this cold weather is that the implant device gets really cold inside my body. Particularly if you come inside to warm up, the metal lump in my rear is noticeably freezing !. And takes a long time to warm up to where its comfortable again.

    Anyone else noticed this ?. Guess theres not a lot we can do about it ?.
    I would imagine Pacemaker users have the same problem.

    #46149

    Sarah
    Participant

    Great news Paul. Glad it’s working for you. Did you have implant moved? Mine is still on the move and fairly useless. Impossible to get beyond answer phone for Nevro rep or pain clinic. Tempted to switch off and give up. Go back to the pain I knew so well. My back has suffered dreadfully. Walking is worse than before. Have no pain relief in form of drugs. Sadly very disappointing, waste of huge amounts of time and effort.

    #46150

    wendyjay
    Participant

    Paul, my unit moved out of place due to a fall a few months after my surgery so its right below my skin instead of deeper in. It is SUPER sensitive so mine does do that too. It is an odd feeling but I guess you get used to it after a while.

    Sarah, I am so sorry your experience has not been a positive one to say the least. I truly hope the pain clinic or one of the Nevro reps steps up and helps you. Is it that your scar tissue isn’t forming to keep the unit in place? Is the unit working at all? Your going on a few months post implant aren’t you?

    #46151

    Sarah
    Participant

    Wendyjay
    Unit has always been just below skin. Every step I take or change in position presses it into muscle, this is pushing it painfully upwards constantly. With the programme that pulses on and off, I can feel it in my ears!! Very annoying..I have a SI injury on opp side. Causing severe muscle spasms in lower back. Cannot get any answer when back is allowed to bend at all. 7 weeks since implant. None of this is covered in the ‘how brilliant we are’ literature!! Need a wheelchair more now than ever before.

    #46158

    PaulT_99
    Participant

    Hi Sarah,

    Sorry that its not working so well for you. Your definitely not getting the support you should be from your nursing team.

    I dont know if they can help, but the Nevro team at Guys & St Thomas have been great. They always get back to me within a few hours. Although since they gave the implant a push back into position i have not had any issues.

    You could try and email them and explain your issues, and the lack of response from your own hospital.
    chronicpainmanagementnurses@gstt.nhs.uk

    #46531

    SharonH10
    Participant

    Hi everyone
    I had my Nevro H10 trial implanted yesterday. In allot of pain today, is that normal? If I twist at all I scream. I know it was only yesterday,so must be patient.
    They are looking to install main unit next Tuesday if my trial successful.
    I just hope it works. Had allot of time off work, just want my life back.

    This forum is so helpful.

    Sharon

    #46537

    wendyjay
    Participant

    Sharon, you have to remember you have wires in there. You shouldn’t be twisting or bending if at all possible. When you do, that stuff moves. They should have told you that. Hopefully it’s a bit less inflamed each day so you can focus on the pain relief, not the discomfort of the wires.
    I am guessing the doctors acted as tho it’s all easy-as-pie. It makes me so sad. Many people go into this unprepared.
    It’s not an easy recovery from the actual surgery (it seems to be toted as one). There are ways to help make the site more comfortable after the real implant while it heals, but not until after the actual bandages come off so you wouldn’t be able to utilize them with the trial, being all taped up.
    I really hope your doing better today.
    My biggest suggestion to anyone doing this is go out and buy a grabber (those things they sell for older people to pick things up & reach things on shelves) so you don’t have to bend or reach. Have someone come over and help you put everything you need at counter height to prevent you from having to stretch for anything. Whatever you do, do NOT reach for anything! Keep your arms close to your body so there’s no stretching or pulling.

    #46540

    PaulT_99
    Participant

    Hi Sharon,

    Welcome to the forum.
    Are you in the US or elsewhere ?. The only experience i have is here in the UK. I only mention as i have found myself when i previously did lots of research on SCS that it is done a little bit different in the states. Mainly surrounding the implant area of the permanent battery unit.

    I had my trial in Nov last year and i was sent home just a few hours after the trial operation. I was so sore and crying in pain as i had not taken any of my medication that morning. As they told me not too prior to the operation. Hospital transport took me home, but its a 2+ hr drive and it was hell. How they expect you to sit back in a chair after your back has been operated on i shall never know.

    Once i got home and settled in, i found the best position was to lay on my stomach to keep any pressure off my back. But it is important as others have said to keep taking your usual medication in the normal pattern. Since you need to see if your SCS helps improve things. Normally you spend a day or 2 on say level 4, then on the 3rd day move to level 5, and on day 5 move to level 7. They should have given you a Nevro booklet to record your pain levels during the trial.

    I responded well to my trial, so they told me to come in on day 8 and i had the full implant done. Here in the UK the favoured area is in the upper bum, just below your natural belt line.
    For me i found the 2nd operation quite hard to manage as i was still in recovery from the trial op. The doctors and surgeons talk to you as if its a walk in the park, but i certainly didnt find it to be so.
    My bum was so sore post op that i was just crying in pain at home and my wife had to take 1 week off to look after me. every time i went to sleep i did so on my stomach.

    You mention about twisting and bending. You MUST NOT. Absolutely not Bend or Twist.
    The wires are floating freely in the spinal cavity, and they are lightly tethered at the point where they enter your spinal cavity (Position varies according to what nerve trunks you need help with). I didnt start bending until about post 5 weeks of full implant, and even then it was only very gentle bending of approx 30 degrees.
    Your post op recovery is very important in ensuring the device works well for you.
    Im now post 5 months and i can just about lift my leg enough and a gentle bend to enable me to put my socks on myself. But i take real care in doing it so i dont stretch too much.

    On my last pain clinic visit i saw a pain nurse who had formal HF10 training, and she said the effectiveness of the device does taper off at around 6 months, but then it levels off and the pain relief should remain somewhere around 50 to 70%.
    I find myself using Level 5 quite often now during the day, but as soon as i can i put it back down to level 4. So trying to prevent my brain from becoming used to it.
    Ive also put myself into a regular pattern of charging myself at dinner times, so it has become routine. Takes about 25mins every day.

    I was very impressed at my recent checkup when they logged into the unit and it showed that i was charging at 6.30 every day as regular as clock work. It also logs every button press or level adjustment. Very clever stuff !.

    If you have any more questions feel free to shout, there are quite a few of us on this forum that have had SCS. From older designs, to the current Nevro HF10 2018 edition. (A bit smaller than previous versions.)

    I have lots of pictures of the unit and wires, so will link them below.
    These were taken on my SCS 2 week training course

    https://i.postimg.cc/YqRQYZjd/IMG-1854.jpg

    https://i.postimg.cc/Y216qh7K/IMG-1855.jpg

    https://i.postimg.cc/zGPWPhCW/IMG-1856.jpg

    https://i.postimg.cc/tTFxTmLt/IMG-1857.jpg

    https://i.postimg.cc/qv7yLw34/IMG-1858.jpg

    https://i.postimg.cc/ZqGNJhD5/IMG-1861.jpg

    https://i.postimg.cc/YSGgcSRP/IMG-1863.jpg

    https://i.postimg.cc/yxBSSyKq/IMG_1859.jpg

    #46542

    SharonH10
    Participant

    Hi Paul

    Thank you so very much for replying. I’m in the UK also I have a guy called James from Nevro who calls me daily.

    Yes I agree, being sent home so soon after trail was a nightmare. I live bear Brighton so got the train! Was in so much pain that night and the next day.was had to tell if unit was working. I’m now day 2. Feeling a little better. Only woke up once in the night from leg pain. My coccyx pain has reduced which is great news. I’m now on level 6 programme 1 today. So will see how it goes.
    Yes so my main implant booked for next Tuesday, I was concerned this wasnt enough time. I see that some people have much longer. I’m not looking forward to the surgery, so how long was your recovery? Are you back at work? I’m worried about my work, already been off 8 weeks this time.
    Great you had a 2 week training course. I wasnt offered that at all. The pics are great and explain why I have pain higher in my spine at the moment. Do you have any other information they gave you??

    Yes mine is also the nevro H10, so the higher frequency one.

    Really nice to have someone to talk to. Thank you again
    Sharon

    • This reply was modified 8 months, 3 weeks ago by  Jan Sadler. Reason: Forum Rule - Consultant's name removed
    #46543

    SharonH10
    Participant

    Hi Wendy

    Thank you for your help. Lol you’re right, they do make it seem like a walk in the park. They didn’t stress to me how much I’d be effected. I’m being extra careful now for sure.

    My Husband bought me a grabber. It’s a godsend lol. I’m feeling a little better today. Just hope that continues.

    Definitely no bending, stretching or reaching!

    Sharon

    #46548

    PaulT_99
    Participant

    Hi Sharon,

    I have the same consultant Surgeon, he really is good. So your in good hands.
    Its a shame that Nuffield House feels like your entering the 60’s !.

    You should have got hospital transport. You just call the transport number for St. Thomas, tell them you can only walk very short distances and have Nerve damage. They will come and pick you up, and take you home again. All free. I use it all the time, as its a 2hr hr journey each way for me.

    For my recovery, i was off work for a total of 6 weeks. And then i got back to work, working from a desk. Luckily my company have been very accommodating and got me a really nice new chair and cushions for me. As my rear end was sore for some time !.

    Just to note, since they will not tell you this. What ever side they put the implant on (Left or right). Do Not sleep on that side !, ever.
    They didnt tell me this, and on week 3 i must have turned onto my left during the night. In doing so the pressure caused the implant to spin 90 degrees inside me.
    Problem is, its oblong. So before it was below my belt line, and actually i was ok putting on a pair of jeans. Now because it flipped, its standing up and above my belt line. So its constantly under pressure from trousers or jeans. Ive got used to it now, but its not ideal to be honest. Given “im getting on ok” with it, they will not re-operate.

    Interested how you got to the operation stage without the 2 week course. I thought it was mandatory. I had 15 people on my course and we spent 2 weeks at St Thomas. Got to say it was excellent. There was a guy from Brighton on my course with severe nerve damage in his back. Poor chap was in tears every day, but his GP was only giving him standard drugs.
    Not the Tapentadol that St Thomas had put me on, which is really effective.

    This is the document they give you, so i suspect you already have this.
    https://www.guysandstthomas.nhs.uk/resources/patient-information/perioperative/pain/Spinal-cord-stimulation.pdf

    #46549

    PaulT_99
    Participant

    Forgot to say.
    Dont forget. If you have any issues, or questions. You can email the team and they generally get back to you in a few hours.
    I used this quite alot initially !.

    ChronicPainManagementNurses@gstt.nhs.uk

    #46551

    SharonH10
    Participant

    Hi Paul
    Great to hear we have the same consultant as me. He seems really nice. I having my ops done at the London Bridge Hospital, its private healthcare so maybe that’s why I didn’t get the 2 weeks course. Wish I had that course though. It would have explained allot more for me.

    Today has not been a good day. I was told to go to level 6. Its caused so much pain in my mid back area. Almost like I’ve been winded. I text the nevro guy tonight and he advised to go back down. He said it could be over stim. Did you ever have that?

    Ok 6 weeks seems great, I also have a good office. Have a fab chair with a desk that goes from sitting to standing. Companies are definitely more understanding these days.

    Ok good shout re not sleeping on the battery side. I’ve got one of those U cushions. They are sold as pregnancy pillows but are great for bad backs etc.

    I take Gabapentin, Cocodemol and sometimes morphine (try not to) so do you think its work me asking re Tapentadol. I’ve never been offered that.

    Thank you so much for the information, I never had any of that!

    Sharon

    #46552

    PaulT_99
    Participant

    Hi Sharon,

    RE The Medication, its up to you. I have been a Chronic pain sufferer for 17 or more years. Been in pain clinics for 10 yrs. And only got referred to St Thomas Pain Clinic about 1.5yrs ago.
    They immediately put me on Tapentadol. Its a new drug released in 2012 and aimed specifically at nerve pain. The tablets are tiny. So small you can almost loose them. But take 2, and wow !.
    For me its better than Oramorph, without the issues of morphine. Ive had a few days lately where i have just taken 1 tablet, But otherwise im off all pain meds and just using the HF10.

    Not heard of over stim. But i think i know what it is. When i had my trial unit, when i put it on full my back almost went into spasm and became really taught. Very uncomfortable.
    When the nurse programmed my real HF10 implant she set the levels to suit my body and needs. I also have mine in “sweeping mode”.

    Essentially, if you look at picture 1 in the message above the wires have 20 tiny little metal segments on them. These 20 metal segments are all individually addressable. Its really clever. So for some people if needs be they can say turn on segments 1 to 3 only and nothing else. If those are the only nerve trunk areas that need help.
    But in Sweeping mode, the 10Khz High Frequency pulse flickers up through the whole wire length to all 20 segments. So the entire wire is enabled covering many nerve trunks all at once. St. Thomas said this is their preferred configuration now so they may do the same for you.

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