Spinal Cord Stimulation implant for pain

Thanks everyone for your kind well wishes.

I left hospital last night, and am now slowly recuperating at home. To be honest, this ‘lower’ lead implant has been a much bigger challenge than the one I had in my neck last year.

While of course I’ve expected to have surgery pain over the 2 incisions, my armpit one is recovering normally, ie it’s tender but improving, while my mid back incision is hyper-sensitive, and a real challenge at the moment. I was still receiving morphine injections until 24 hours ago, and they’ve barely taken the edge off. I’m now on oral opiate medication at home while hopefully this area calms down a few notches

I spoke with my specialist last night when he visited me in hospital, and it looks like my nerves are hyper-reacting in the implant area – it’s been an issue because the worst of my chronic back pain starts at T9 / T10 and goes down to L1 – and that’s precisely where a lower lead goes in for everyone under the Nevro system. So my highly irritable nerves around T9/T10 in particular are dealing with both surgical incisions along my spine and attachments of electrodes on them, and complaining the only way they know how – by sending out intense pain signals

Usually the new leads are switched on a week or so post surgery, but due to my back being so hyper-sensitive, we’re moving that forward, hoping that if they work, I’ll get relief from the implant pain and my chronic pain. Fingers crossed that’s right, and testing gives some very needed relief.

To be honest, as challenging as this new lead procedure has been, if it’s going to be successful and work like it has for my neck problems, then every single second of this experience will be worth it. I’m trying to keep the bigger outcome in mind as I deal with current issues.

I’ll update in a few days.

Good luck Linda.
Ive looked after quite a few people with these who have had very good outcomes. Fingers crossed for you.

Update – I go into hospital tomorrow to have one of these leads put lower down my spine, to see if I can finally get some relief after 4 1/2 years of 24/7 thoracic and lumbar nerve pain.

Needs 3 different operation sites and a couple of nights in hospital, but I’m actually looking forward to it. I have nothing to lose by the lower lead being tried out, and if it helps, even somewhat, that’s better than where I am today. And if it doesn’t work, well, at least we tried it. It’s worth a bit of discomfort and so forth to at least give it a go

Update

Still experiencing really good relief from neck pain / referred shoulder pain. I’ve spent the last 9 months or so working with my physio on rehab for my shoulder. Range of movement is hugely better – strength, we’re still working on, but it’s better than it was and improving slowly

Mid back / thoracic pain is as resistant as ever to anything sorting it, or helping it much. I’ve had injections since the implant and been seeing a specialist consultant physiotherapist, and nothing changes it much unfortunately.

I do have one option left to try – if I had a bad lower back, I’d have an implant lead in my mid back, to work on my lumbar.

But at the moment my implant lead is up high, to deal with my neck/shoulder, but I don’t think is reaching my lower thoracic – I’m planning to see how feasible it is to have a 2nd lead put in, in my mid back, to concentrate on my lower thoracic pain. My lower thoracic pain goes into my lumbar anyway, so really, it does need treating down there.

I hope it’s not a big procedure i.e. having to surgically remove my implanted device into my hip from my shoulder for example wouldn’t be pleasant. But I’d do it regardless, if it could possibly help. I’ll update once I’ve chatted with the experts and we’ve got a plan in place

So glad you are finally getting some relief from all the pain Linda. I’ve heard about the implant and so wish it was around when I had my chronic pain with neck and shoulder.

I so can relate to your pain of even lifting your arm up to do some sort of activity. I had to give up playing tennis because I couldn’t lift my arm up. For over 30 years now, I have just had lots of physio and Chinese acupuncture.

These days I have found a great lady that does Japanese acupuncture, which at least gives me some relief from the pain I get. I also use tens machines and exercises and of course pain killers to get me through.

I seriously hope it all works out for you Linda……let us know down the track how it goes too.

Linda, I’m so pleased you are finally getting relief that could be permanent. I’ve not heard of the procedure and I do hope the long term benefits for you are on going. It is incredibly difficult to be “normal” and deal with pain on a constant basis. I do hope all goes well for you.

I’m glad you’re finally sorted, well mostly sorted. I’ve been keeping relatively up to date on these devices. From what I’ve read, they’re not suitable for my problem. I’ve had migraines since I was a teen, but when I had my car accident, they increased in frequency & severity. This was years ago. This is something I really don’t like talking about. I’m coping. I’m glad things are looking up for you & that you’re not still suffering under the dreadful public health system.

oh what a horrible experience Misfortunate8, I’m glad you’re over the worst of it now. How are you treating your migraines – are they coming from your neck area due to whiplash?

I know what you mean about pain clinics in the public system too unfortunately. I went through so much stress & hell trying to get a procedure done I’d had a private pain specialist tell me it was ‘the first thing he’d do’ – I saw him for a report for my lawyers for my compo case. It wasn’t a big deal, but something that had to be done as a day patient in a pain unit or via a pain specialist. An injection… Do you think I could get this procedure done in the public system? I even swapped hospital pain clinics & still had it rejected. I waited over 6 months to get into an alternative pain clinic too. It was so demoralising, and depressing, and stressful.

So I sensibly took out private health insurance last year, as I realised if I stayed in the public system, they’d do zero more for me. They just wanted my GP to put me on opiates & for me to live the rest of my life with chronic nerve pain & disability. So wrong!! seriously!

I had that procedure done at my own expense last year via my private pain doctor & it definitely helped, despite the public system saying it would have no benefit & refusing point blank to try it. And what I spent was refunded via my compo settlement early this year. And as it only partially helped, my pain doc suggested the new implant technology. With this unit, they’re getting over 80% success rate, which is huge. Life-changing for so many people

I’m glad you’re getting some relief Linda. I wish they had these back when I had my car accident years ago. I never imagined how your back could hurt SO bad. It hurt to stand, sit or lie down, it hurt to stay in the same position & it hurt to move. I’m glad it sorted itself out, I still get migraines though.

Few things were as traumatic as the hell I went with over the ineptitude of the doctor & nurse at the pain clinic I went to. You imagine people get into healthcare because they want to help people. There have been a few serial killer doctors & nurses. Some people get into healthcare because they like the blood & guts, I think. I’m ranting now. It’s in the past. I’m glad you’re getting relief because I know how chronic pain sucks your soul out.

Linda good luck with everything – what a shocka to read about your car accident etc. Glad though that this has helped to some extent with your pain. I’ve never heard of this before myself but was interested to read your post because of a personal diagnosis of a autoimmune nerve thing I found out I had around a year and a half ago.