I tried many different drugs and I have been on drugs for twenty years, and with very little effect if any, well positive effect, but some quite disturbing side effects, which were primarily drowsiness, being rather weak, but feeling uncomfortable like that for many years, is quite disturbing.
And at that point, at the age of 30 or so, we started to hear rumours about this new operation for treating torsion dystonia in a patient which was a brain operation. It’s called DBS – deep brain stimulation and it’s a rather dramatic operation but the results appeared to be quite good. So I started making further enquiries and once again found ourselves flying to England to see [Dr A] at [hospital B], who gave me the first assessment, and said it would appear to be a good classic case for the operation and I would be a good candidate for the operation. The same was said by, by [Professor B] who was my specialist in Israel. He said, “Your gait is sufficiently bad. And it has a sufficiently bad effect on your everyday life, for it to justify such a drastic action.” And so we met this Professor here in, in the UK and he said it sounds like a good idea, and something that could potentially give me good results. It could also significantly improve my quality of life.
So a year later [L] and I packed our stuff and moved to the UK, and in December 2004 I was in the operation room in [Hospital C] under the hands of [Professor C], who is a renowned neurosurgeon.
I expected to be, I wouldn’t say cured, but I expected to see a great relief in the condition. I woke up the following day. It’s a rather, from the patient point of view, it’s a rather simple procedure. It was done under full anaesthetic. It wasn’t very painful. There’s no bone cutting, there’s drilling through the skull, into a certain part of the brain, inserting an electrode into an area called the GPI – Globus Pallidus Interna and inserting a pacemaker under the skin here in the chest and then a cable connecting the two and the theory is, by sending this constant stimulation to this part of the brain, it somehow, I’m not sure exactly how but it does, somehow, relaxes the storm, the electric storm in that part of the brain, and the condition is significantly or the volume of the condition, the volume of the noise, is significantly reduced.
So that operation was done in December 2004, and the anticipation was that in a few mon… a few weeks, six weeks later I would see the benefit. Weeks have gone by and there was no benefit whatsoever. On the contrary, there was quite significant deterioration. If I could hardly walk prior to the operation, making the, the smallest crossing the room was practically impossible. I was on the verge of, actually in some ways, I wished I was in a wheelchair, because then, if you’re in a wheelchair you can actually move. You can start putting the - those who can walk, and those who are in the wheelchair - it was being neither here nor there, because I couldn’t really walk, but I couldn’t, I couldn’t bring myself to sit in a wheelchair. So it was a horrible place to be. I’m not suggesting sitting in a wheelchair is good in any shape or form, but at least you are not all over the place and trying to get from A to B.
You get this peace of mind. That’s the way I imagined it. It’s completely, obviously, I always remember that being actually able to get up and walk is a great benefit compared with others. But in my mind, I was in a terrible place not being able to walk and not being able to get from A to B otherwise. And my condition continued to deteriorate as time went by, and I went to see the neurologist, Dr B, and kept on being told that it takes a while before the benefit kicks in and I have to be patient and there’s no reason to worry, but things will improve and just be patient.
And as my patience ran short, I suggested to the team, to both the neurosurgeon and neurologist that maybe there was something wrong with the position of the electrodes. And they said, “It’s very unlikely, but just to be on the safe side then…” after I insisted, they agreed to send me to an additional MRI.
And I remember quite clearly coming out of the MRI room and seeing the neurosurgeon and he told me on the spot, [Professor C], and he told me on the spot, the electrodes are in perfect position and he wouldn’t have moved them by a millimetre. Which for me was the worst thing I could possible imagine, because if he would have told me “My mistake, it’s off target”, it would have been great news because there is a reason why it doesn’t work, whereas if the electrodes are in the right place then may be my condition doesn’t react well enough to this operation. So this light at the end of the tunnel’s actually switched off.
So that was the worst possible result that I could. And then for another, that was about four months after the operation and I kept on going back and forth to both the neurosurgeon and to the neurologist. They kept on tweaking with the machine, changing the voltage, changing the pulse length, changing all the different parameters within the system… it’s quite a tricky to sync, to get right.
But the analogy that I suggested was that in the TVs before the days of digital TV, you could tune it until you get some sort of get a reasonable picture, you get rid of the snow, and you get some picture, and then, and then you fine tune it to get the best picture. But in my case, I was completely in the snow. So there was no picture at all. They said, it’s a good analogy, at least we’re in the snow. So … getting some pictures should be relatively easy. Fine tuning can take a while so let’s get something. And we couldn’t get anything.
So, after a very difficult, very challenging year and a half in the end of 2005 or the beginning of 2006, I went to my GP and said, “I would like to get a second opinion. Even if I have to go back I would like to have a second opinion. Something doesn’t sit quite, something doesn’t sit well with me.”
She said, “It’s not a problem at all,” and she send me to the team at [hospital B]. I went to see [Professor D]. And she’s a neurologist, and I brought with me the CDs of the MRI that I had from the, the second MRI that I had, in, in [Hospital C].
She looked at it, and an hour later she called me again, and she said, “Oh it’s quite obvious why it doesn’t work. I mean the electrodes are six to seven millimetres off target,” which in brain surgery are like trying to get to London and then ending up in Bristol. It’s way off. It’s unreasonably far.”
And that was probably the happiest day of my life, well not the happiest day of my life, but it was a very happy day. It suggested that my gut feeling was always there. For a year, now, for a year and a half, since I’d had the MRI done in the first place, there was a very clear something was very wrong if electrodes are in the right place. Look for the problem elsewhere. And there was just such a relief to know that there is a real reason there, a physical, a surgical reason why it doesn’t work. I was just over the moon, and I couldn’t get rid of the smile for a long time after.
And then I saw my saviour, [Professor E] from [Hospital B] who looked at the MRI again and said he totally agreed it didn’t take him very long to get the same conclusion, without seeing the conclusion from [Professor D]. And, and before I jumped into the operation again, to get my brain opened up, I went to see, [Dr C] who is a British doctor who now lives and operates in Israel. I asked him to look at the MRI and he also agreed. I knew there were three experts confirming that the electrodes are indeed misplaced. I was more than willing to throw myself at the hands of the neurosurgeon once again.
And the second operation took place in May 2006. And it was very short of a miracle, the results were tremendous. I remember two days after the operation I got out of bed. I could walk. It wasn’t very good. It wasn’t normal, but I could walk with some…. Just like someone put a wet blanket over a source of noise, and it was just quiet, I was just relaxed. And it was like an amazing peaceful experience. And that’s it. From there on it just kept on getting better. It’s not, my gait is far from normal, but it’s a world apart from where it was.
