Spinal Cord Stimulator implant. First hand experience from Tizzy

Those who remember our good friend Tizzy will be particularly interested in this update on her experience with a Spinal Cord Stimulator implant.

The spinal stimulator that I had in my trial and subsequently implanted a month ago is the version that represents a leap forward in technology. For once my timing was spot on as I had tried other things ( Medication) which seemed to have a reasonable effect but then the rate of my Em progression …well the Em was winning. However it was only in March this year that " burst pattern" implants became available in Australia. The spinal stim I had was from St Jude Medical, who I believe are the only company using the burst pattern . St Jude is the patron saint of ,to put it bluntly , lost causes. Well anyone with Em can probably relate to that feeling! Back to the main point - spinal stimulators to this stage worked by causing a feeling of Paraesthesia ie pins and needles to block / confuse pain signals being sent to the brain. This feeling often had to be very intense to block the pain , even to the point of muscle twitches( I know ,unpleasant in itself)
Imagine my delight when this burst technology is not and should not be felt at all. In fact if you feel tingling you have to adjust the device down in strength!!! Amazing and less chance of habituation to the signal. It is interesting to note that pain pathways are located near the parts of the brain that seems to control feelings of wellbeing, which makes a whole lot of sense . Do these pathways have interconnections in the brain ? - the St Jude research team is hoping so ,though there is not enough information yet.

Anyway ,I had better remind people that I was having the implant for neuropathic leg pain and cramps NOT flares. I have few flares due to medication ( usual stuff ,but rather a lot ) . Actually I will put them here in case anyone is curious - Effexor , Lyrica, Targen and clonizepam ( at night for tinnitus and cramps) . Yep ,it’s a lot . It took determination to get through the side effects but I am determined to live as normal a life as possible and for me this is so worth it. So then flares were minimal and to all intents and purposes the nerves seemed calm, warm showers were had!
But then this terrible night pain in lower legs ,knees ankles - awful . No sleep for months and in the mornings hobbling like an old crone due to stiffness. At this point I started munching on endone to no effect…no relief . Very upset due to lack of sleep and the fact even I had limits to the amount of pain meds I was going through.

A visit to pain specialist confirmed that my suffering was from neuropathic pain and with the amount of morning stiffness he was concerned about my falling into the land of CRPS . Not a good thing to put it mildly . So Stim trial was set and results were good as posted via the lovely Nel.

Now to the surgery to implant the battery ,that is the power source to the leads which travel up the spine in the epidural space. The leads are implanted separately and go to a level that provides cover from the waist down . So I have an incision where the battery is tucked ,kind of lower waist level ,behind the iliac crest. The incision is 5cm long.The lead incision is at the base of the lumbar spine and is 7cm in length.

The surgery is minor ,though things are never risk free. On the whole I was satisfied that with an experienced doctor I would be fine. I was a bit concerned about the infection rates at the battery site. ,as it is a foreign body . This is a bit higher than one would expect ,rates seem similar worldwide looking only at infection rates in excellent hospitals mind you ! To further mitigate risk of infection I was admitted the night before for iv antibiotics that continued through my surgery and after. The procedure was a breeze ,even with the scary sounding bit were you are woken and asked to pinpoint location of sensation to make sure you get cover were you need it.

I was in hospital for 5 nights ,mainly to monitor no infection was developing and to make sure I would not bend or twist and move the leads . If you decide to anchor the leads to bone because you want to be very active after the surgery a neurosurgeon must do the procedure and the recovery period is more significant . In my version adhesions that develop hold the leads in place. If I am unlucky and say have a fall the leads could displace and I would need the surgery redone . Some people decide to have the bone implant if they have repeat lead slippage. I went for the less invasive version as I am not aiming to be super active!

The first two night were a bit painful and I asked for a bit of morphine. The days were fine ,I could sit upright or lie flat . I wasn’t game to lie on the battery implant side until the third night, it was fine. The nurses had padded the incision up thickly with a pillow like dressing !

I had the implant turned on and programmed on the second day and refined at one month. The technician mapped and updated the stim pattern and the areas it reached . I don’t feel any sensation from the unit ,except if I arch my back or am in an awkward twist ,which I shouldn’t really be doing anyway . I am sleeping VERY well ,only two nights with some discomfort in a month. In headline news ALL STIFFNESS IN JOINTS AND MUSCLES IS GONE! I can get out of bed and move like a normal person ,never knew that neuropathic pain could cause so much stiffness. Pain doctor is unsurprised as is well documented in CPRS patients. As to Em flares , hard to say as they are better BUT it is our cool winter. I really can’t compare to this time last year in a reliable fashion . I am having quite warm showers and not hopping around would be the best I can say - will have to wait for hot weather.
I am thrilled with results ,glad I don’t have to put up with tingling of old stims !
Not sure what I would say about having implant for flares alone , I guess a trial would reveal if it helps.
I am containing my meds through "winter " in the hope that a break might re set them - my theory alone ???
I hope the effects last long and well ,again …?
Good luck , remember this is very different device to the older style, so again good luck if you decide to try agin.

Thanks for sharing this, Nel. I'm so glad Tizzy was able to get some relief.

Where is Tizzy from?

Tizzy is in Australia

What great news for Tizzy! Plus hope for a lot of us here as peripheral neuropathy is often the cause of EM. So, if it becomes available world wide we might all get the chance to have this done. People very often fear an operation of any sort, but personally I would rather go through a short time of pain etc. due to the op rather than long term symptoms. Let's all hope that it helps her flares as well at least some hope for us. We should never give up hope as you never know what new things come along these days there is so many things they are now finding either cures or relief from illnesses.

I’m really happy for Tizzy! And I really appreciate her update, letting us know how she is and what she’s been experiencing. Even when you still have residual health issues, getting a good night’s rest makes all the difference in the world to your quality of life.