Julie Dennison - Living with Epilepsy

Vagal Nerve Stimulation

What is it?

The vagal nerve stimulator (VNS) is one of the latest things in treating epilepsy. A small pacemaker-like box is implanted under the skin, just above the collar bone. It is attached to a coil of wire which is wrapped around the vagus nerve in the neck. The signals from the VNS are carried up the vagal nerve to stimulate the brain. In some cases, this can relieve and/or reduce epileptic seizures. It is not a cure and is used in conjunction with medication.

How the Vagal Nerve Stimulator is implanted and adjusted (pic: Cyberonics patient's manual)

A chance to try it out

Since my medication had never been totally successful, I was excited to be offered a chance to have a VNS implanted. I waited nearly a year for the operation to be carried out, and couldn't wait for the day of the operation to arrive. It could be a light at the end of a long tunnel, after many years of uncontrolled epilepsy.

The day of the operation finally came and I was admitted to the Royal London Hospital in Whitechapel. Feeling lonely on the ward I walked into the television room and watched Eastenders. Then suddenly a woman walked into the room with a look of shock, excitement and a beaming smile - she was a very dear friend of mine whose son has very bad epilepsy. He was also at the hospital for the same operation. We hugged each other. It was unbelievable.

I had just a few days in hospital. Before the operation I remember the excitement, expectation and uncertainty of what was to come. After it, my voice became hoarse and my throat felt painful where the coil of wire had been inserted. It felt like daggers digging into my throat and a soreness that penetrated my chest. It went on about a week.

Although initially set at a low level, the VNS and the coil in my neck started to stimulate the vagal nerve. It was set to switch on for 30 seconds and off for 90 seconds. After a few days, I was discharged from hospital but for some time I could still feel a strange sensation which took my voice away for short periods. It would only last a few seconds at a time but long enough to make a distinct difference, where comfort was concerned. As time went on, I became used to this strange sensation in the throat and could talk whilst it was switched on, even though my voice was a little gruff.

In addition to the automatic pulsing of the VNS, I can switch it on or off by means of a magnet which can be worn on my wrist, or on a waistband. This can be used to give a boost to the signals if, for instance, a seizure can be predicted. It can also be used to stop the VNS temporarily when a croaky voice is unacceptable, such as when I give one of my talks. Wearing the magnet can be a mixed blessing. It often sticks to knives and forks during meals, and it had a startling affect on the colours of the television when it got too close on one occasion - fortunately the TV was re-settable.

Adjustments

After a few weeks, I attended the Royal London Hospital for the first of several visits as an outpatient. The doctor would hold a special rod (known as a 'wand') close to the VNS to adjust the amount of stimulating it does. These appointments go on regularly, until the most effective level has been found.

Three months after the operation: the strength of my VNS pulses has been increased to a level where the doctors expect them to have some effect on my epilepsy. I have noticed that my larger seizures seem to be occurring less frequently. Unfortunately, the smaller absences, though better, still plague me. But this is new. I must remember to give it time. That is important.

After every appointment at which the strength of the VNS is increased, my throat feels uncomfortable for a couple of days. It is a tight feeling, almost as if I am choking. Coughing fits may occur at this time but I just bear in mind that it should not go on for long. On one hospital visit, I had to have the stimulator frequency altered because it made me feel uncomfortable for very long periods. Instead of being on for 30 seconds in each two minute period, it is now on for seven seconds in 30. Since then the uncomfortable feelings have reduced.

Travel abroad

I have recently travelled throughout Egypt, which involved not only four airports but security machines at every hotel and tourist attraction. I was concerned that the VNS would cause a problem with the scanners. Before travelling, I got a letter from the Royal London Hospital explaining all about the implant. As a precaution I did not take the magnet with me. In fact, I had no problems at all, either at airports or any other scanner, but I felt happier having the hospital letter just in case.

The future

Will the VNS be the answer to my prayers? Only time will tell.

To be continued . . . .

HowdyDave has lots more information about the Vagus Nerve Stimulator from the patient's point of view.

Click on the image to buy Vagus Nerve Stimulation, described as a "clinical approach to the treatment of patients with medically-intractable seizures, as well as for those with depression".