Spinal cord stimulator – questions

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This topic contains 35 replies, has 7 voices, and was last updated by  PaulT_99 1 day, 20 hours ago.

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  • #45487

    annie mary
    Participant

    Hello everyone, The possibility of me having a SCS has been raised by my dr. I have read a fair bit about some of the technical stuff but I would really appreciate anyone’s thoughts and experience regarding a couple of points:

    1) I am on a high dose of opiates, but the dr says I have to reduce and come off these BEFORE they would insert the SCS……….is this everyone else’s experience?.

    2) I understand the no bending, twisting, lifting, driving etc rules…..i am just interested in how you managed on a practical, everyday basis….what u found difficult, how you managed and adapted to to everyday tasks?…hints, suggestions, warnings? and also how those of you who live on your own managed in particular.

    Many thanks in advance to anyone who replies

    #45488

    PaulT_99
    Participant

    I am having mine done in about 3 weeks time at St Thomas.

    I had to sit in on a 2 week course at the hospital, before they give approval for you to have a SCS. During that course they did say that meds have to be brought down to as minimal levels as possible. This is so they and you can see if the SCS is having the correct desired effect.

    Re 2: On my course was also a school PE teacher, and also a builder. They were told that are are no longer issues with bending / twisting and so on. As the wires are now anchored. The PE teacher was told she would be able to do Barrel rolls on the floor every day if she needed too, it would not effect the implant wires.

    I guess this all depends on the hospital and the surgeon doing the job. So these comments relate to Guys / St Thomas London.

    #45489

    wendyjay
    Participant

    First I’d like to say others may not agree with me but I’d like to help you by offering how my experience has been. I’ve had my SCS for just over a year now. It has made a huge difference in my life. Is it a quick recovery? Not as quick as I had hoped. Was is painless? Absolutely not. Was it worth it? Absolutely!
    I did not have to taper my meds (OxyContin 30mg per day & oxycodone 40mg per day, topirimate & baclophen) beforehand, but soon after the procedure. They did not give me any additional meds after the procedure (just my usual dosage). I was surprised by that but understandable because it was quite a lot. But I was in a lot of pain for the first 5 days after. It gradually got better each day. The first three days were the toughest. I literally felt like a human shishkabob. I couldn’t twist, bend, roll over or get from a lying position to a seated one without great difficulty. Even if it was “allowed” I wouldn’t have been able to do it. My entire back was bandaged & taped for 10 days. That means no shower or washing your hair in the sink because you literally can not bend over. It would be too painful even if it were allowed. The bandages can not get wet. The staples can not get wet until a day after they are removed. I was not prepared for that. I suggest you make an apt with a hair salon at least once during your recovery to have your hair washed. If anything to make you feel better because trust me, your not going to be in great spirits during that time. I was out of work for 3 weeks. I stand at a desk all day. But I was exhausted & sore. Give yourself plenty of time to recoup & rest. I wish I had taken at least another week off. It took much more out of me than expected. I am a super active mom of three teen boys. I work 40 hours a week, cook large meals every night, do all of the cleaning & shopping and at the time drove the boys everywhere and attended all football & basketball games. It’s just me so i was very concerned about how I was going to take care of everything. I had a plan. I made the boys start doing their own laundry & the plan was that they would help with everything. Plenty of friends said they were going to bring dinners for the boys so I could rest. I knew that I would not be allowed to bend, twist or lift anything heavier than a gallon of milk. I was not allowed to drive for 2 weeks. Well the boys did not hold up their end & neither did all of the friends who I have helped with countless things all these years. I suggest you put money aside for lots of take out or make an actual schedule of meals that will come from friends so they don’t forget. I placed all items that I need on a daily basis at waist height & in convenient places that wouldn’t require any reaching. I bought a grabber which was my favorite possession throughout my recovery. It was the only way I could grab things or even put on my own shoes & socks.
    The unit does not work immediately. Your body needs to heal around the unit & the leads. The swelling needs to go down and just the trauma from surgery causes quite a bit of inflammation. The unit wasn’t even turned on until 2 weeks after the surgery when I met with a rep to program it.
    I did get some relief a day or so after that. Each day got better. I had it reprogrammed at 6 weeks and that’s when you really find out how well it works for you. My suggestions are: ask if they are giving you post surgery meds. If they are not, if at all possible stash away a bit of your meds for the first few days. Buy a grabber! Reposition items you commonly use so they are easily accessible. ASK FOR HELP with shopping, cooking, everything! Give yourself plenty of time to heal. The scar tissue around the unit can take up to two months just to feel normal-ish. It will also bother you because you can feel it in there. It takes some getting used too (a few months) but then you won’t notice it anymore. Get some CBD oil to help with the first bit of recovery. It will help with the pain & to help you rest. You won’t be able to do anything but rest & you will be uncomfortable. CBD salves have been my saving grace. I used it for 6 months to rub into my scars & where the unit is as they all bothered me for a long time.
    Sorry for such a long post but I’m trying to help. I went into this with no idea of what to expect which wasn’t the best experience as I had to figure out quite a bit the hard way. If you have more questions or anything I haven’t touched on, I would be happy to answer anything I can.
    My life is better now. I have been able to cut out the OxyContin & cut down on the oxycodone to 30mg a day. If your doctors are saying you will be able to stop all pain meds, that is very much an exaggeration.

    #45490

    PaulT_99
    Participant

    It sure sounds like the physical trauma from the operation in itself is a large step to get over.
    They have told me its a day case, i go home the same day ?.

    I have had 3 hip replacements and 7 hip operations. Im absolutely covered in scars so im ready for the trauma !.
    The skin tissue on your back though is much more sensitive than say the hip area. So i guess it will be more sore.
    Re the box itself, they now place it in your lower right back, above your bum. Is this where you had yours ?. The latest box for 2018 is also about 30% smaller than the previous ones. Ive seen the new Nervo HF10 and its about half the size of a box of matches. Approx 25mm square, and maybe 8mm thick.

    #45491

    wendyjay
    Participant

    It is only a day surgery. I have to say everything your told makes it seem like a walk in the park. I just want to show that it’s not. I’ve had other surgery and three babies all natural (no pain meds or epidural) and frequent kidney stones all my life so I’m pretty tough but I wasn’t really expecting it to be quite as rough as it was. I just want to share my experience so whoever is going into this isn’t surprised. It was absolutely worth it so please don’t let me deter you. Just don’t go into it thinking your going to be perfectly fine in a week. Even tho the units are tiny, your body has to get used to it being there. It does go above your bum just under your waist. I was told it would be in my bum cheek so that was a surprise to me. I’m a very small person so that could be why I felt my unit so much, but regardless of your size the scar tissue has to form around it which will take a little time. It wasn’t particularly painful after the first 5 days or so, it just felt odd & agitating so the creams etc. help. My dr told me some people start off w/lidocaine patches to use until the unit heals & they get used to it being there.
    Again, please don’t let me deter anyone. Just be realistic in your expectations. Give yourself time to rest & heal. Don’t push yourself to try to try to be back to normal in a week.
    Anyone who is considering the implant is already in a ton of pain. Your doing this to feel better and you will, just be gentle on yourself. Miracles do not happen over night. It bothers me that’s it’s promoted as such.

    #45492

    wendyjay
    Participant

    Since you have had hip replacements etc. you have been in the predicament of being immobile for a brief time & have felt what it’s like to have something foreign in your body so you have an idea of what to expect. Most people don’t. Your right, it’s the first few days that are rough. Good luck with your implant. I hope you get plenty of relief from it. It has made a huge difference for me. I wouldn’t change it for the world.

    #45534

    Navchic
    Participant

    Hi Annie – Mary,

    I had my SCS Nevro HF 10 inserted 5 years ago, and agree completely with Wendy. I love my Stim, I mind it and do my best to make sure nothing happens to it for 2 reasons – It really helps me manage my chronic pain, and it was not easy surgery or recovery. As an ITU nurse, my return to work was vey slow but I am working fulltime now, doing shifts and participating as well as most of my team. I still avoid heavy lifting etc – as those things exacerbate the pain with or without the stim.
    Wendy’s advice is sound – preparation is key, especially if you live alone. prepared food, assistance to change bed linen, house cleaning etc(possibly lower standards…). Tomorrow marks 5 years since my implant, I’m 100% glad I have it, and my one worry now is what will happen when the battery needs replacing. I’m hoping the new stims are compatable with the old leads – as I’m fairly sure that mine are bedded down so well now, it would take a bomb to remove them!!
    Good luck with your surgery Paul and Annie if you decide to go ahead.
    T

    #45535

    PaulT_99
    Participant

    Interesting to know you had the HF10 5years ago. I thought the High Frequency units were a new thing.
    Did you see the Daily Mail article on Sunday in the Heath section ?. I posted in another thread below this one.

    Must admit im getting more worried about the post Op recovery now. Work are expecting me to be back in 2 weeks. Or at least be able to do something from my bed.
    Ive been made redundant 3 times due to my illnesses, and really cannot go through that again. The money worries are almost worse than the pain when that happens.

    #45536

    wendyjay
    Participant

    Paul, I was back to work in two weeks time. Granted I only work in an office so hopefully your job does not require a lot of physical lifting etc. you will be fine to go back to work but more tired as your body is still healing. Just to mention….As far as driving, you are allowed to drive much quicker than they used to allow. I started driving again the day I got my staples out. I drove myself. It’s just tender getting in & out of a vehicle. I could have been driving sooner but if I didn’t HAVE to go anywhere. I didn’t feel like going anywhere.

    #45546

    Navchic
    Participant

    Hi Paul,

    My leads are at C2, so really high up and could easily move – as they can’t be anchored at that level so had to embed themselves. I think the leads can be anchored for low back? That would make movement less likely. I could have participated in office type work a few weeks after, but that’s not the type of job I have, and redeployment isn’t well managed in my organisation. After a few months, they put me in a non job, I think to bore me in to leaving. Anyway, I stuck it out for a few months, but got back to my own job against their advice and I’ve no problems with my stim. It’s 5 years today since my implant! The nevro has been around since 2010 at least, which is good as there are people who have gone before you. Tried and tested I guess. The model is better than the older models that give you a buzzing / tingling sensation. I get no sensations, just a reduction in pain. I can’t really explain the working of the device – just that for me, it does work!
    I knew within hours I wanted the box implanted. Here, they do a 2 week trial, with the leads in, and then if it works, they implant the device. I think the device is the expensive bit (40,000) where as the insertion of the leads and using an external box for a few days/ weeks allows them to be sure the device works first. That’s how they did it here (Ireland) 5 years ago. I’m not sure if that’s changed. In the UK, I have heard others have the trial first, then the leads removed and the whole thing repeated a few months later with the implant.
    If you search SCS in the group search box they are hundreds of posts about stimulators – good and bad. There are 2 bloggers who have links to their blog post of their experinces. If I can find them I’ll copy and paste the links.
    T

    #45896

    annie mary
    Participant

    Firstly I want to apologise for not replying sooner when you have taken the time to respond to my question (Paul,Wendy,navchic)….Unfortunately I have been unwell with other health problems and then a family member has also been unwell. Thank you anyhow for your practical and honest feedback which is exactly what I was looking for. A few things have stood out to me…..
    1) it seems strange and somewhat cruel if you are being told to reduce or stop all your pain meds prior to surgery and then cope with your original pain as well as the pain from the surgery without seemingly any analgesia?….and furthermore to continue in this manner until the unit is switched on….after 2 or more weeks?…or did I read that wrong?…
    2) It seems that the info I had been reading regarding no movements must have related to surgery a good while ago because that info said the restrictions were in place for somewhere between 3 and 6 months!.
    Thanks again

    #45897

    PaulT_99
    Participant

    Hi Anne Mary,

    Im now post 1 week implant of the Nevro HF10.
    Going absolutely great. My pain level today is 0/10. Nothing at all !.
    I had about 1/10 yesterday in my legs first thing in the morning but that went after i started moving around.

    I have included more info in the other SCS thread about 3 down from this one.

    Edit, here >

    Spinal Cord Stimulation.

    Prob best to read all 3 pages.

    #45898

    annie mary
    Participant

    I have been put forward to attend a multidisciplinary meeting about the possibility of a spinal cord stimulator and whether or not one would be suitable for my pain. I have started to jot down some questions to ask but i would be grateful if anyone who has been through this process could suggest things to ask based on what you asked and/or what you wish you had asked…(I hope that makes some kind of sense!) Thanks

    #45899

    PaulT_99
    Participant

    Hi Annie,

    The multi disciplinary meeting is the first part of the whole process of working towards an SCS implant. Its mainly for them to ask you questions.
    You will see Nurses, Pain management doctors, physiotherapists, and mental health teams. All in one visit.

    Its quite intense, but they need to make sure its the right route to take for you.
    If you pass this, you will generally get put forward for the 2 week residential course which needs to be completed prior to surgery.
    If and when you go on this course, this is the place to ask all the questions. You will also be on a group with others. Generally about 10 or more. So they will all be asking questions and may come up with questions you did not think about.

    At Guys & St Thomas its taken me about 8 months to go through the entire process from the Meeting you mention above. To the course, and to the Surgery which has taken place for me over the last 2 weeks.

    Feel free to ask me anything you need to know.
    I also have pictures of the implant, a spine model and how they feed the wires up alongside the spinal cord.
    I also have the new Nevro Charger and Remote control unit. So can take pictures of those if you want them.

    all the best
    Paul

    #45902

    Jan Sadler
    Keymaster

    Please note, I have merged the two posts on the other similar thread with this one, so please carry on using this thread. Many thanks.
    Jan at PainSupport

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