Living With a Spinal Cord Stimulator: One Year Later

[@shiewhun1772]

"..then you'll know the knock on effects on your ability to function; friends, family, work environment * has flashback * ". I felt that

[@Hand-i-Craft]

I think many folk can relate to that part 🙏

[@sydneymartin952]

Great video, I'm sorry you had to go through 3 years before they did it. In my case they sent me to a specialist that stuck needles into my muscles and nerves to check where the problems were, that was painful, after that they told my dr and according to him they told him I needed it right away but first I had to go through a psychological evaluation to make sure I would be able to handle having it in my body. I am so glad I went through with it cause it has helped alot. I have to recharge mine every 6 days. Thank you for doing the video

[@Hand-i-Craft]

Thanks for the comment Sydney and it’s great to hear from another person who is experiencing the benefits of this type of surgery, long may it continue 🤞😀👍

[@Ttraye66]

So happy it worked for you! I only know 1 person that had a stimulator put in and they say it changed their world for the better, she had a Nevro. All the other people that I know that have had one, they have all either turned it off, or had it removed. Unfortunately I didn’t have a good experience, in fact it took my disability from about 70% to 99.99%., my nerve damage is off the hook. I just had my 3rd posterior cervical fusion surgery in 2 yrs.,I am hoping it is stable. I have had 7 neck and 3 back surgeries over the too many years of suffering. I know that I will never be pain or nerve damage free, but to know my cervical spine is safe, that will be a win for me. Hoping you have nothing but a great experience from your stimulator!

[@Hand-i-Craft]

Thank you for your kind feedback and I’m sorry to hear about your situation, but thank you for sharing your experiences in this message. Best wishes to you, Leo 🙏👍

[@Ttraye66]

@ thank you I appreciate your kind words!❤️‍🩹

[@heathercarpenter6800]

Thank you for the SCS videos, I have my trial coming up on the 20th of this month for my lower back .. I'm so nervous. Your video's helped a lot. Thanks again.

[@Hand-i-Craft]

I wish you the best of everything for your trial Heather. Please let me know how you get on with it🙏👍

[@denisetaylor4099]

Hi Leo , I just wanted to say a massive heart felt thank you for the 3 videos you have put out on re the Nevro SCS . I only found and watched all 3 yesterday as I have been searching for a UK patient experience for ages and there's nothing out there that goes into as much depth as you have done. You have helped me understand so much more about the process of the SCS and the emotions I have been struggling with associated with living with chronic pain. I too am a patient at Walton Neuro hospital and have been on the SCS pathway for 3.5 years and today finally had the Nevro SCS Trial fitted, I mentioned to Hannah the specialist nurse that it was watching your videos that provided me with the reassurance that I needed. Like you say the medical and all hospital staff are outstanding and supportive but being able to identify with another patient has been invaluable to me. So from the bottom of my heart thank you for what you've done you are an inspiration. Take care and wishing you continued good luck with your SCS journey.

[@Hand-i-Craft]

Hello Denise, I don’t know where to start except firstly to thank you for such a thoughtful, kind and considerate message. Yes I think you have to live the experience of chronic pain to understand the full impact it has on you as a person, but also your family and loved ones. This one message alone is enough for me to know the videos were worth putting together. I’m glad you found some of the content useful, I hope your trial SCS is a success and keeps you on that path to a more permanent reduction in your pain. My sincere best wishes to you and your family, Leo ❤️🙏👍

[@lbarbero6393]

Thank you for this series of videos and your honest approach. My husband also lost functional use of his right arm due to an SCI caused by a car accident almost 18 years ago. He has lived with chronic neuropathic pain ever since. It’s recently escalated to the point of him getting on the path to an implant. Listening to your experience has eased our worries about the procedure. Much appreciated. Cheers.

[@Hand-i-Craft]

@@lbarbero6393 thank you for your very kind feedback and I hope the SCS proves a success in terms of pain relief for your husband. Please keep me informed of his progress should he decide to go for it 🙏👍

[@paulsmorthit3820]

Hi Leo.. Great to listen to your straight-talking video. I am having my permanent implementation on the 24 of October. For me, the trial just got better each day. As you mentioned about the lack of sleep when I told the doctor I had the first full uninterrupted night's sleep in six years, I don't mind admitting I broke down in tears. 100% respec sir. No sugar coating just the truth, what everyone needs.❤

[@Hand-i-Craft]

Hello Paul, thank you for such kind words which is greatly appreciated. I wish you all the best for your permanent implant and please keep in touch to let me know how it goes. I have an email in the description if you’d like to keep it private 👍👍

[@shaun30-3-mg9zs]

Hi Leo, hope your well, Not me personally but my son, Cameron I know what you mean by tunnelling , when Cameron had his surgery as a child in Alder Hey hospital in Liverpool the surgeons had to tunnel a tube from a shunt which is valve with a spike in to the brain and a tube the other end that is tunnelled down through his neck to his chest and in to his stomach so that his CF fluid from his brain can travel down to his stomach. Cameron was born with Spina Bifida and Hydro Cepholis which is water on the brain that is why he had a tube from his head to his stomach. I am happy for you and it been a year and now you can control your pain I know its not a cure but you can manage it . They are good specialists in Walton Hospital in Liverpool and now Cameron is under Walton now. It's good to see you are doing fine and treatment is working well, It's good to talk about this and to hear your experience on this. Always good to watch Take care mate

[@Hand-i-Craft]

As ever Shaun, thanks so much for your comment and sharing your family experiences. It means a lot to me and I’m sure folk who read the comments will appreciate the thought you put into them. Wishing you and your family much love pal 🙏❤️😀👍

[@paulhodgson4790]

Thanks for the update Leo, it's great to hear that things are improving for you.

[@Hand-i-Craft]

Cheers Paul, really do appreciate it pal as you’ve been along for the journey for a long time and it’s nice to share some positivity 🙏😀👍

[@WoodworkJourney]

Thanks for this Leo. My consultants are now going to explore the nerve stuff in my brain, but who knows when. Unfortunately pain meds do next to nothing for me, even the morphine based stuff. To be honest, I’m really struggling at the moment and my mental health is in the toilet. Nobody can do anything though, and talking isn’t going to fix it so I’m hoping to squish those emotions into a box and bury them somewhere like normal. Especially if you’re on KZbin, people see the best of you, which is often a small percentage of your existence. Keep on keeping on fella, I hope it continues to improve. Oh BTW you have a ghost moving the blind behind you now and then LOL

[@Hand-i-Craft]

Thanks Dean and I’m sorry to hear you’re not in a great place pal. Even verbalising to yourself is sometimes a mechanism instead of keeping it bottled up. Take care Dean, thinking about you 🙏👍

[@onehandedmaker]

Hi Leo, Thanks for sharing and congrats on how your disability woodworking channel is going. Still in the process of making my mind up so it's great to hear real experiences. 38 years of pain for me this year and cope by staying busy. Take care my friend. James One Handed Maker

[@Hand-i-Craft]

Thanks James for the message, really appreciate it pal and I wish you all the very best with whatever you choose for the future 🙏😀👍

[@vernsteinbrecker3759]

I’m sure glad it’s helping, you should be so proud of yourself in what you have accomplished

[@Hand-i-Craft]

Cheers Vern, very kind of you pal and appreciate it 👍👍😀😀

[@timberlaneworkshop2402]

Hi Leo I wish I'd spoke to you more at makers Central. Although we have different abilities I took live with chronic pain and the depression and anxiety. Keep up the good work buddy 👍👍 Phil

[@Hand-i-Craft]

Thanks Phil, appreciate the message pal and sending positive thoughts your way 🙏😀👍

[@Pete.Ty1]

👍👍👍 An honest and inspiring video. Thank you Leo

[@Hand-i-Craft]

Cheers Pete ❤️😀👍

[@gingerrichards6442]

Thanks Leo, your videos on your quest for a spinal stimulator and about having a spinal stimulator have been very informative. The trial worked very well for me. The permanent was put in 3 weeks ago. I’m still sore from the incisions, but the stimulator has probably cut the pain 50 to 60 percent already. I have the latest version of a Medtronic spinal cord stimulator. It has a contentious closed loop technology and it automatically senses my movements. We are still in the adjustment phase, but so far I’m pleased. Having chronic takes a real toll. The last few nights I have been able to sleep through the night. This is a major improvement. Leo do you need anything for breakthrough pain?

[@Hand-i-Craft]

Cheers for the message and great to hear you are benefiting from reduced pain post surgery. Yes the incision marks and surgery are quite invasive and will take time to heal, but hopefully well worth it all in the long run 👍👍

[@barry.w.christie]

You can learn to work with physical disabilities, but to be in constant pain is a totally different ball game. I totally understand why it would affect your mental health, even something simple like toothache for a few days can be debilitating, never mind having pain for years. It's great to hear that this has made a huge difference to your life 👍 I'm a cyborg as well, having a Implantable Cardioverter Defibrillator (pace maker) fitted after heart attacks and dropping dead ... I can't charge mine, so it needs to be replaced every so many years (probably around seven years for me) 😁

[@Hand-i-Craft]

Absolutely hit the nail on the head here pal in regards to pain. It can literally consume you and take you down a very dark path. Good to chat to a fellow cyborg my friend 😀😀

[@taylo256]

Great video open and honest Is the device forever or will it in xx years time need to be replaced?

[@Hand-i-Craft]

Cheers James. Yes the implant is forever but the device will need replacing in around 10 years 👍👍

[@TRACIEDAmbrosio]

Thank you! Question are there certain ways you cannot twist or crunch with the implant? Mines for pain in my left flank which ive had my gallbladder removed which wasnt the reason for the pain. The doctors said it nerve pain stemming from the thorasic region. Thank you again for your video.

[@Hand-i-Craft]

Thank you for the kind comment. In regards to movement, the best advice I can offer is it is about the rule of common sense. Of course things like contact sports etc are no longer possible (you have an implant fitted to your spinal cord after all) but it shouldn’t affect you living a relatively ‘normal’ life. I tend to be mindful of busy places as I don’t want to be shunted into, but I can still enjoy activities like swimming and my workshop so for me personally it is about being sensible and mindful of my environment 👍👍

[@alexandradomonkos2998]

Hi, just a quick question, how long did it take after the trial device to get the permanent one? Thank you

[@Hand-i-Craft]

For me it was just under one year, but I had to undergo knee surgery inbetween trial and full implant and the full implant surgery was unfortunately postponed a couple of times

[@alexandradomonkos2998]

Thank you so much for your answer!🥰

[@JuliePrudente-n4d]

May I ask what device are you using sir.

[@Hand-i-Craft]

The manufacturer of mine is Nevro 👍👍

[@joebrewer5885]

How can the trial one work so fast if the permanent one has to be "dialed in " for weeks or months?

[@Hand-i-Craft]

Sorry Joe, only just seen your previous comment and replied. It’s a good question and I don’t know the specifics to be able to answer from a medical perspective. I think they try broad spectrum settings in the trial to see if there is one particular frequency / impedance that aligns with your chronic pain condition. If it does and you feel the pain relief from it they can then focus on that starting point once the full implant is fitted should you decide to go for it. In terms of dialling it in, the implant is constantly evolving. There are software upgrades they can install that may be able to improve your pain relief further. As I say I’m only speaking from personal experiences and all of these questions you have should be put to your consultant or a member of their team 👍

[@HRTsAFyre]

My stimulator never worked and the 2nd battery had been dead since at least 2016 or 2017i want the damned thing out. Its probably making my pain worse.

[@Hand-i-Craft]

Sorry to hear about your experience and as I said in the video the surgery isn’t necessarily for everyone and even if people do go through with it, it isn’t a guarantee of success

[@bigbadjohnpesek9894]

I have the nevro scs permanent one. If it wasnt for it i would not be able to walk upright. Ive had three failed back surgeries and if it wasnt for the scs i thought about suicide just to end the pain.

[@Hand-i-Craft]

So sorry to hear about your pain experiences but good news that the SCS has managed to help you manage your pain much better 👍👍

[@jackattack9799]

What is your average pain for 1 out of 10 ?