The Spinal Cord Stimulator And You, A Match Made In Heaven?So, you’re thinking about a spinal cord stimulator. I hope that I can answer some of your questions, and perhaps even bring up a few things that you haven’t thought of yet. I’ll also look at some of the different types of stimulators and the alternatives that are available as they vary hugely in design and function. First of all, though, let me tell you a little about myself.
My name is Hilary Lister. I am 28 (just!) and suffer from RSD (Reflex Sympathetic Dystrophy) or CRPS I (Chronic Regional Pain Syndrome Type I) if you’re really up-to-date… This is a disorder which affects different people in different ways, but chronic pain is always one of its more attractive features! In my case, probably due to a lot of bodging by various people, it has affected all four limbs, and I now find myself quadriplegic. Just in case you’ve only recently been diagnosed, don’t let this scare you. It’s extremely rare for this to happen.
I began to notice problems at the age of about 10. At this point I just experienced very poor circulation in my legs, and knee pain when I was playing hockey, rugby and various other “vigorous” sports. It was years before I did anything about it, and only went to the doctor at the age of 15, by which point I could hardly walk and had the most attractive purple legs anyone had ever seen! Without boring you with the details, I went through years of completely inappropriate treatment, including vicious “psychotherapy”, before finally being correctly diagnosed just 3-or-so years ago.
I was fitted with a spinal cord stimulator approximately two years ago, and it has worked extremely well for me, despite some initial problems due to an over-enthusiastic carer, who managed to dislodge the leads just two weeks after they had been put in, and then an extremely rare breakdown (am I beginning to sound like a disaster area yet?). However, the whole thing is now up and running beautifully, and it has changed my life.
That’s just about it as my story goes, but let me say just one more thing. I’m still taking as many pain killers as I was before, but the background level of pain I’d persuaded myself to live with has subsided. It has also meant that I have been able to move limbs, or rather get other people to move them for me, that have been static for years.
Types of Stimulators
TENS: For many pain sufferers, this is the first type of stimulator tried. It works by over stimulating the nerves in the skin so that the nerve pathways are unable to carry pain messages, simply because there is ‘no space’. The major advantages are that it is relatively cheap and requires no surgery. The disadvantage is that the electrodes must be positioned accurately each time and it involves messy conducting gel and sticky tape to hold them in place. My experience was that it worked for about 10 min, by which time I’d turned the power up full, and I stopped feeling the effect.
This leaves the internal stimulator which has one major disadvantage - the need for surgery which is complex, can be very time-consuming, and carries risk..
These systems consist of the electrodes and a receiver box which is placed under the skin. An antenna is placed on the skin over the receiver, and a cord runs from it to the transmitter (power/control box) which is worn on your belt. The external box contains the power source (a 9V battery), and is used to program the electrodes either together or individually.
It is easy to control the level of stimulation you receive from the box, so that the strength can be turned up and down as needed. The electrodes can be reprogrammed either by you or by a professional as your needs change. I have a 16 electrode system implanted, which uses a relatively large amount of energy, so I change the battery about 3-4 times a day. I am also able to re-program the stimulator to a limited extent myself.
The biggest problem I’ve had with the system is getting my carers to position the antenna accurately. The transmitter beeps to tell you how close you are to the receiver, becoming higher in pitch as you get closer. Sometimes it just doesn’t seem to want to go. The strength of the signal depends on how accurately the antenna is positioned.
The Operations Involved
There are normally two operations involved in implanting a spinal cord stimulator. During the first operation the electrodes are put in place, and you are fitted with a temporary stimulator. There is then a trial period of up to 3 weeks, during which time you must decide whether the system will help you in relieving some of your pain. If you receive no pain relief at this point, the implant is abandoned. Once you have decided to go ahead, the second operation implants the receiver, and stitches everything up.
You will be left with two scars - one about 4-6 inches along your backbone from the first operation, and another scar about 3-5 inches over the receiver. This is usually placed in your groin, but mine is on my lower back. Of the two scars, this is the most noticeable. So much you have probably learnt from your consultant/surgeon.
Now for the patient’s perspective!
The first operation is the longest, and most testing. Although most surgeons put you under sedation whilst they insert the electrodes, you are then woken and, under local anesthetic, each electrode lead is manipulated into position. The surgeon needs you to be awake so that they can place the electrodes in the most suitable place. They will turn the system on and off, sometimes putting you back to sleep, until you think that you have the best position (i.e. so that there is stimulation of the nerves in the area(s) where your pain is worst).
It can sometimes take upwards of 4 hours, and is exhausting, but well worth taking your time over. Make sure that you get the best combination, even if it means going back to a previous setting. Although it’s extremely tiring and hard work stick with it as it’s your one and only chance to get this right.
You will almost certainly know whether the system is going to work for you very soon, or even during, the operation. If it doesn’t seem to happen straight away though, give it time as the electrodes settle.
The second operation is much simpler from your point of view. You are put under heavy sedation or even general anesthetic for the entire procedure. However, I found that this was the more uncomfortable of the two operations - perhaps because my receiver is in my low back/buttock area, and I can’t sleep on my front or side.
General Notes:
Firstly, and most importantly, spinal cord stimulators do NOT work for everyone. They vary in their effectiveness from 100% pain relief all the way down to 0%. There is no way of telling for certain whether or not one will work for you.
Things to take into consideration when deciding on whether or not to use a spinal cord stimulator.
1. Is this really the right solution for me - is my pain constant or bad enough
to make pretty major surgery a price worth paying?
2. Am I prepared for the possibility that these systems may not work in my
case?
• I may not like the tingling sensation of the stimulation.
• I may find the stimulation comfortable but it may not relieve my pain.
• It may not be possible to place the electrodes in the correct area.
• I may be one of the lucky ones and it is the answer I’ve been waiting for.
Please feel free to get in touch with me via the Algotec e-mail address if you would like to chat about what living with Spinal Cord Stimulation is all about.
Hilary Lister
