Lifetime of Spinal Cord Stimulator

Following onset of permanent chronic lower back pain and sciatica I went through months trying to get a diagnosis and treatment. I was eventually diagnosed as having my sacroiliac joint out of alignment due to childhood accident where I badly fractured my pelvis age 7 - believe it or not but a piano fell in me when I was at Brownies and we were trying to move it! Treatment for fracture was 3 months flat on my back, no pillows with my ankles tied together. At age 26 I was unable to deliver my daughter naturally due to extensive curve in my pelvis.

Bouts of back pain and sciatica dogged me but in 2006 a 'bout' never cleared up and got significantly worse. Following diagnosis early 2007 I was referred to pain specialist. Tried medication etc without great success. In summer of 2008 I had St Jude Medical spinal cord stimulator put in and was able to come off opioids - great! It was an early model that was not rechargeable but I was told it would last up to 5 years. So I was devastated only 17 months later when my battery 'died'. There followed 7 months of arguing with my NHS board to get monies for replacement - I live in one board area but my pain specialist works for another board. God bless the NHS for all my treatment but it's bureaucracy is horrendous and I say that as a NHS senior manager. In 2009 I had a rechargeable model and implanted but immediately started to feel like my spinal cord was getting electric shocks. 9 months later and feeling like I was going mad my Neurosurgeon admitted that he thought he'd 'caught one of the wires' during implantation. So early summer 2010 I had surgery to remedy which initially was successful but infection set in. There followed over 4 months in hospital and 5 operations to strip out infected system and then implant of new system when infection cleared. However, things like having the battery put in upside down meant more surgeries with infection being a major problem. Eventually I had a very effective system that was working well and infection cleared up.

After years of inactivity my weight had ballooned to over 22 stone and I knew it wasn't doing my back much good. In 2012 I started to eat healthily and lost 4.5 stone by myself. Weight loss plateaud so in summer 2013 I joined Slimming World and by New Year 2014 I had lost a further 5st by diet alone.

However, weight loss is not straightforward for someone with a SCS! My battery was struggling to connect to my charger and was spending 5-7 hours per day charging to get 18-24 hours pain relief.  My weight loss had left my battery unit without the layer of fat cover required for safety and also to charge the battery unit.

So February 2014 saw my battery unit being resited in my stomach but 2 weeks later I was very ill with an infection. I was transferred from my local hospital to neurosurgery unit in the other NHS board area and had the complete system removed except the scarring around one of my leads was so bad it was unsafe to remove. Sent home on antibiotics to recover a new neurosurgeon decided 3 months later to remove the other lead as I was still on antibiotics to no effect. Surgery left me with 3 laminectomies in my thoracic spine as the lead was so difficult to remove. I was again sent home on 3 different antibiotics and confined to bed. After 4 months and many more types of antibiotics later I was finally clear of infection and had a brand new SCS implanted.

Thankfully this unit has been very successful in treating my lower back pain and sciatica and apart from regular clinic appointments required to fine tune my programmes and increase the power of the unit I was doing great. Fast forward to November 2016 and I started to notice that my unit was turning itself off! Initially I thought I had run out of charge but that wasn't the case. It started with the odd switch off but now, my unit can switch itself off more than a dozen times a day.

So next week I have my clinic appointment coming up and well I'm expecting to be told that it needs replaced. My St Jude rep has told me previously that for someone like me who has to have my intensity level increased at every clinic appointment, the unit has a life of about 3 years. Obviously I've had my lifespan and I'm taking it that my units desire to switch itself off so often is an indication that it's coming to the end of it's working life. Also the need to charge 4-5 hrs every second day is another telltale sign.  I know there's the benefits of having a new model implanted such as using an iPod to programme rather than the large programmer that weighs a ton in my handbag - infact maybe the newer model of using your iPhone as a programmer will be available by now!

Has anyone experienced the problem of a unit coming to the end of its working life or am I an exception?

One thing I know for sure is that I have to have surgery to replace the unit, I'll be insisting on a course of antibiotics before, during and post surgery!

Btw, for anyone interested, I haven't just managed to keep the weight off - I've since lost another 2 stone and weigh the same as I did when I got married nearly 30 years ago - so I'm a happy bunny on that😁

I'd be interested to hear from anyone with any issues with the limited working life of St Jude units.

Thanks for taking the time to read my post

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