Parkinson's disease
Surgery for Parkinson’s disease: Deep Brain Stimulation and lesioning
When we refer to ‘surgery’ in Parkinson’s disease it usually refers to Deep Brain Stimulation (DBS).
Deep Brain Stimulation involves placing a wire with electrodes at its tip into one of three target sites in the brain - the thalamus, the globus pallidus or the subthalamic nucleus. A few days after they are connected to an implantable pulse generator (IPG). This small unit is inserted under the skin on the chest wall. When the IPG is turned on the electric pulses stimulate the target area and produce a change in the Parkinsonian symptoms..
Before DBS was introduced in the 1980’s the only operation available for Parkinson’s disease involved selectively damaging certain cells in the thalamus and the gobus pallidus called 'lesioning'. While this sometimes relieved symptoms the damage was irreversible and the operation was risky. With DBS the insertion of the electrodes can be checked to confirm that they have been sited correctly and there are further opportunities for ‘fine tuning’ through the IPG. The technical advances which have made this operation possible have been the development of CT and MRI scanning which allow the surgeon to locate the target site with great accuracy. While it is not essential, it is usual for the electrodes to be inserted with the patient awake so that they can provide evidence that the target has been reached.
For several of the people we interviewed who had not had the operation, the possibility of being awake while their brain was being manipulated was enough reason for them to dismiss the very idea of undergoing it.
As Humphrey said, “One does see things in the paper sometimes about an operation involving electrodes in the brain, which requires open-head surgery without anaesthetic. So I don’t want to have that very much, thank you very much. I’d rather have Parkinson’s frankly.”
Helen says that nothing on earth would persuade her to submit to DBS.
Helen says that nothing on earth would persuade her to submit to DBS.
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Have you talked to anyone ever about the operation that can be done to you?
Yes, I have and there’s no way on this earth that I’ll ever do it. I’m very, very squeamish and it freaks me out. I watched a film of it once and I sat and cried. I never cried ever having this disease and that made me cry. I sat there and cried and cried thinking, “Oh my God.” So no, I’m I can’t say I’d ever, ever, ever have it done. I mean when whether it came to a point where your life was so difficult that you would I don’t know but I just pray they find a better cure to be honest.
Others however had looked into it and were willing to consider it as a future option, especially if it offered the chance of regaining some of their lost quality of life. Many people's attitude was coloured by having met someone who had had the operation, mostly people who had benefited from it, but in one case someone who was definitely no better if not worse. The operation was known to be very expensive and some people thought that even if they were judged to be suitable for it they might find that there was no NHS funding available where they lived. Alan had actually taken out private health insurance to cover the operation should he need it.
Elisabet, who had her operation through Norway’s National Insurance System when she was 65, realised that she was lucky to have been accepted as she knew that they had to make choices and that she would not have been considered if she had been over 70.
Peter had at first been put off by seeing someone whose operation was unsuccessful but then saw a television programme which he found more encouraging.
Peter had at first been put off by seeing someone whose operation was unsuccessful but then saw a television programme which he found more encouraging.
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I saw him for, two or three weeks ago. And he was just a shaking, trembling mess. I mean he can’t, he couldn’t, he couldn’t, I don’t know his age but he can’t be more than 50. But he and his wife had to pester and pester and pester before he finally got on the programme. And then he had to go through all sorts of tests and psychological examinations before they could decide that he was a suitable candidate. I mean it is quite a, a long operation, isn’t it? I mean it’s about eight hours I think. And you, you’re....
You’re, you’re awake and you’re, I think you’re sitting, aren’t you, or something like that? And it, it’s not a programme I watch avidly, please don’t think that, but on Richard and Judy one afternoon, I was just, I just happened to see it and I thought, “This guy’s a Parkinson’s sufferer.” Do you know what I’m going to say? I mean this was last year I think. And he’d had this brain stimulation. And he was a pleasantly set up looking guy, a little bit overweight perhaps, in his 40s I would think. He was a businessman and he travelled the world very successfully. I don’t know quite what it was he did. And he’d had this brain stimulation. And he’d got a thing like a, a remote control on his chest. And he said to Richard, he said, Richard said, you know, Richard being Richard, because he’s a twit, he said to him, he said, “What happens if you switch it off?” And he said, “Do you want to see?” So he said, “Well, yes, if you don’t mind.” And he switched this thing off, and he immediately started to shake, he was like a huge jelly.
I mean he was able to switch it back, and he just stopped the minute he switched it back on again. I thought, “My God.” So it obviously shows what a bad way you’re in before they, before they will do it. And again, yes, I mean I’m 72, so they’re not going to worry too much about me. But he was a younger guy. And, yes, I thought, I thought that was absolutely wonderful. So they’re getting there.
We interviewed 6 people who had had DBS. For them the threat of being awake during the operation was more than compensated for by the offer of improvement in their symptoms. In each case they and/or their physicians felt that they had come to the end of the line with drug treatments. Either they had been tried on every possible drug available for Parkinson’s disease and none of them had produced significant improvement or had caused intolerable side effects. Or they had had the disease for many years and had reached a stage when they were experiencing increasingly disabling dyskinesia from the high doses of dopaminergic drugs they were having to take.
Khadim describes how the doctors looking after him decided to offer him the DBS operation.
Khadim describes how the doctors looking after him decided to offer him the DBS operation.
Sex: Male
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…the consultant in the hospital treated me for, with some medicines, they tried, roughly eight different kind of medicines you know? Nothing worked on me, then in the end he suggested it’s, it has to be Parkinson’s, you know, because I’m not responding to any medication at all. So he still kept on treating me, calling me back in every six months and the problem was getting worse and worse and worse, more in right arm than in left. The tremor was getting bigger and more in right arm than left but both arm were shaking. I could not hold a glass of water, I couldn’t shave, I couldn’t pull a zip up, I couldn’t do or undo a button of shirt, you know, the shaking was so bad, so the consultant from my local hospital sent me to [another] hospital, you know, for consultation there. And the surgeon and the consultant, which is I believe above him, you know?
So they looked up on me and they diagnosed me as Parkinson but it’s increasing, by then I was about, with this disease, about two or three years I think, and they said, “Well it’s, it’s, it’s out of control now, it cannot be controlled with the medication, but you remain on the medication, we’ll enter you a Parkinson’s Disease Study.” Which they done, at that time I don’t know what it meant, but then as time went by I experienced what it meant, you know? They kept calling me in the hospital to, do various tests, you know, walking, picking things up, doing things, you know? And they kept me calling in again and then they decided that nothing seems to be working on me and I’m physically okay to have a surgery, so they thought about it several times whether go ahead with the surgery, you know, I said, “If there’s no cure for it I’ll either live with this, which is impossible, or I’ll have a surgery.” So they looked at my state, they looked at my condition, they looked at my age and whatever and they thought the surgery might be the answer because I look, I’m not ninety-five years old or something like that, you know? I look quite capable of putting up with the surgery, you know.
Joe explains what he was told about the operation before he accepted and why he agreed to have it.
Joe explains what he was told about the operation before he accepted and why he agreed to have it.
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Perhaps at this point I mention that I’m very well apart from my speech which has been affected because I’ve had an operation on my brain, which has made an enormous difference to me. But before that operation which took place about five and a half years ago I was very, I was getting very disabled and very troubled by dyskinesias, by involuntary movements, my walk was very poor, I needed help with various things during the day I had to be watched carefully night and day. So I was getting fairly ill and pretty suicidal too because it seemed to me it was an intolerable way to live, so the operation came in good time and I’m very grateful for it.
My memory fails me quite often but I think, the operation was suggested to me because I was young enough and it seemed that my symptoms were the kind that could be helped, not every symptom is helped by, by the operation I think they suggested the tremor and the stiffness could be helped.
It was my neurologist’s suggestion that I might be suitable for the operation on the NHS because it’s very expensive, costs about twenty-five thousand, so I’m very, I’m worth a lot of money.
So when it was first suggested to you what was explained to you about what it might mean? And did you have reservations about it?
Well it sounds quite frightening because it was explained to me that I would be awake, it would take most of the day, they would drill into my scalp and insert electrodes which would be connected to a battery, a neuro-stimulator under my collarbone. It was carefully explained to me that the risks were of bleeding, stroke, death and I asked of course what the percentage likelyhood was of any of those things I can’t remember what I was told. But I, it was explained to me that there were these risks. So did I want to go ahead. As I said earlier I was finding life intolerable so it seemed to me there was nothing to lose, and I did trust the professor very much. I didn’t have any serious doubts and no doubt about the outcome either.
Khadim describes what he felt at the prospect that he might not survive the operation.
Khadim describes what he felt at the prospect that he might not survive the operation.
Sex: Male
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Well actually I was looking forward to it, I was, although it is scary, you know, because they, they, they pointed out it was risky, operation carries risks, you know, infections, rods not in the right place, things like that you know? It does carry risks, I said, “Well if carry risks, I’ve got to die one day so I die, I want to die, if I die on operation, operating table so be it, you know, but I can’t live with this, I can’t live with this, it’s so embarrassing, you know?”
...in my community the operations are normal, someone’s having a heart bypass, some’s having a back operation, someone’s having something removed, so I was considered among, among those patients, you know, and the prayers were held for me in the local mosque, you know, God make him healthy.
He comes back with us, things like that, you know, as well but that’s quite normal for my community, you know? I mean several people that I know have a heart bypass and I was considered that oh I’ve got this thing fitted in me the same as they fit, they fit the thing in the heart, you know?
So is that, I mean when you were going before you had it did you think it was quite likely that you might die?
Well that’s, that’s it that’s the risk they tell you don’t they? If something goes wrong, I didn’t think I would die but I thought some other things, like I end up in no brain, I end up with damaged brain, I end up mad, I end up, things like that, you know, but never thought of, that I would go to sleep, you know, that I’ll die.
And that must have been quite frightening to have those thoughts?
Not really no, no I, you see our belief is a religious-wise that whoever is born in this world has to go back to his creator. I mean dies, and that’s it, some die forty years old, some die sixty years old, some die twenty-five years old. So if you, if you keep that in mind and you and I both have to go one day then, then nothing, then no other fears attack you, you know, no other fears overpower you, you know?
So despite the warnings that they would be awake, that it would take all day, that there was a risk that they would not survive the operation, and that they could suffer brain damage, these people agreed to accept the DBS operation. Only Neil who had had a previous operation as part of a trial of a drug known as GDNF was asleep for both operations. All the others found that to their surprise the experience of being awake was not terrible; they remember with interest things that happened in the operation.
Joe explains why it was necessary to be awake during the operation.
Joe explains why it was necessary to be awake during the operation.
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The operation, you’re awake because they need you to respond to questions and also to indicate I suppose by movement whether they’re targeting the right part of the brain, they’re aiming for some, some are very small and very precise, and they need your help to do that. It isn’t, it sounds horrific, drilling in to the brain while you’re awake but it isn’t at all, the reason for this as I understand it is the brain has no nerve cells so it doesn’t feel pain. I think. So you don’t feel the pain as they drill into the scalp which of course does have nerve endings you have a local anaesthetic.
Your head is held in a clamp, it’s an extraordinary experience, they’re drilling in, and you’re not feeling pain anything much, it’s as if there’s an aeroplane inside your head, there’s so much noise. I’m a great holder of hands and also it’s, an enormous comfort if somebody holds your hand.
Did you speak?
I spoke The professor has, it’s not a mantra but I can’t think of a perfect word, he would say to me, “This is a night mail crossing the border bringing the cheque and the postal order, how’s it go on Mister George?.” And I had to tell him how it went on, as I spoke I think mainly in answer to questions.
Khadim remembers the surgeons adjusting the position of the electrodes during the operation.
Khadim remembers the surgeons adjusting the position of the electrodes during the operation.
Sex: Male
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The only experience I had during the operation was that, I was looking up at the ceiling and I could see double, double vision, you know, I can see it’s, it’s the lightbulbs, operation light [laughs] operation room lightbulbs you know? I can see, suddenly see two, you know, one becomes eleven, you know? And then they, they done something and eleven becomes one, and when it became one I said, “Oh that’s okay I don’t see double vision now.” And they locked it there, you know? That was, that was to do with the depth of the laterals I believe you know?
A few days after the electrodes had been inserted a second operation, this time under anaesthetic, was carried out to join the wires emerging to the pulse generator which was implanted into the chest wall.
In the days following the operation both the patients and their friends and family were amazed and delighted.
Joe realised almost at once that the operation had been a success. He explains some of the immediate advantages he noticed.
Joe realised almost at once that the operation had been a success. He explains some of the immediate advantages he noticed.
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When did you realise that it had been a success?
Almost at once. The brain is shocked or stimulated just by the insertion of the electrodes so before they set up the connection with the battery, which happens two or three days afterwards, there’s some improvement just from the electrodes going into the brain. So, I was no longer, when I was in hospital having this operation in the preparation days before it I tried to be as independent as possible which meant I fell a couple of times going to the loo because I didn’t look for help, so after I had the operation going to the loo was a breeze, I could walk without assistance. I was very tired I think after the operation, can’t quite remember, I had lots of friends come to see me.
I think the difference the operation made was that I began to feel like me again rather than like Parkinson’s which had become so dominant. And, I think the prevailing feeling I had when I was so ill was one of loneliness, nobody can actually understand what it feels like, which makes you feel very isolated.
Not all signs of their Parkinson’s disease had disappeared. For Stephen what has been important has been the improvement in his quality of life allowing him to remain relatively independent and to be able as a single parent to continue to care for his teenage children. An unexpected and gratifying side effect of Stephen’s DBS is the disappearance of the urinary incontinence which had bothered him before the operation.
Elisabet notices changes since the DBS, including a new found ability to fall asleep at night, but she is most impressed by the reaction of her friends.
Elisabet notices changes since the DBS, including a new found ability to fall asleep at night, but she is most impressed by the reaction of her friends.
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I’ve had some fantastic effects. All my life I have had sleeping problems. Suddenly I can, when I go to bed at night I fall asleep [laughs], quite simply. And to an insomniac, which I have been since I was a child, so it’s something familial perhaps. But it’s so fantastic [laughs]. Apart from that, I don’t think well the, the tremor has gone, or is being kept in check by very small doses of a different or a differently working drug. And I am in need of no Levodopa and I think that just as earlier I have good days and bad, I also now have good days and bad, but the fluctuations are much less. And therefore I often forget to take my medication. It’s not so, not as serious as it was. So that’s I think the gist of my story [laughs].
So what impact has the operation had on your being day to day life now?
So what impact has the operation had on your being day to day life now?
Well you know the operation comes at the time when I’m ready for pensioning so there’s a big change anyway. And I, I can’t say that I experience, you know, it’s strange I, I don’t experience much change. But that is because of my denial of the disease in the first place and in a way I can see the change more in the reaction of my friends because they can’t stop staring at me [laughs]. And now they confess that, “oh yes I, I was really shaky before,” and they were sometimes scared by what they saw, although they didn’t tell me. And myself, I was inside, I was never shaky [laughs] I, I wasn’t much, much influenced by that disease. It never, I never allowed it to take me [laughs], so I never became a patient.
Joe compares his own improvement with that of other people he sees in the neurological outpatient clinic.
Joe compares his own improvement with that of other people he sees in the neurological outpatient clinic.
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When I go to hospital for check-ups or to make adjustments, which I endlessly do, trying to get things as good as it can be, I have met other patients who’ve had the operation, you can usually tell because they’ve got these lumps on their head like I have...
...those bumps there are where they drilled into the scalp and they sort of plug all the holes they made. So I can usually tell when I see another patient who’s had the operation, especially if like me they’re losing their hair. Women it’s not so easy to tell. It seems to be there are people who have been less helped than I have, who still have some tremor, speech problems, perhaps some troubles walking still. My walking is excellent now, beginning to be less so but that, that I think is just because I’m getting older, the knees are going like they do when you’re older.
Some people have difficulties with their speech following the operation, a symptom which some did not have before DBS. As John described it, “I’ve lost my ability to throw my voice. I found when I’m in company I can’t talk to anybody, nobody hears me. If I’ve got two people I’m out of it.” Neil lost his hearing which he was told was probably the consequence of a sensitive area getting touched during the positioning of the electrode. Elisabet has found that since the DBS she is sometimes totally unable to find a word she wants, but has otherwise had no untoward effects.
One important change which has affected all the people who had DBS was being able, as Elisabet did, to cut down on the amount of medication they have had to take to control their symptoms. In doing this they have mostly succeeded in avoiding the dyskinesia which had troubled them before the operation (also see Other medications for Parkinson's disease and how to manage medication).
For Khadim the situation though much improved is not perfect, “They’ve cut it down to half, then they cut it down to another half and that wasn’t enough, I had to go back on to first half, you know, if I go on the full amount then I getting the chorea back in my leg, you know, and the leg starts wobbling about, you know, they go all over the place.”
In the years following DBS regular hospital follow-up appointments were required to ‘fine tune’ the pulse generator.
Khadim had been given a remote control device which allowed him to turn off his pulse generator at night thus lengthening the life of the battery, which he thought is normally about two years. He also described a system of lights to allow you to recognise when the battery was beginning to run down.
None of the people who had had DBS regretted it, but they realised that they might have to face further deterioration in the future.
Joe's condition has gradually deteriorated since his operation and at times he finds himself dreading what the future holds.
Joe's condition has gradually deteriorated since his operation and at times he finds himself dreading what the future holds.
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I tend not to think about the future, it’ll come when it comes.
Do you ever worry about it?
I do yes. Somebody said we’re all mad at night, and of course if I awake in the night with black thoughts. I think what I hope is that I will die before it’s too difficult because the illness of course is progressive deterioration, and underneath the massive improvement I’ve had in my symptoms I think I can still sense the illness going on. This speech is one thing that indicates that it’s still operating, My problems with balance are another indication, the illness hasn’t been cured by the operation it’s been ameliorated.
Research into treatments for Parkinson’s disease
When Fred was asked what he hoped for in the future he said without much conviction ‘a miracle cure’. In fact on a later occasion he admitted, ‘I would love a miracle cure. But it’s unlikely to happen.’
For most people with Parkinson’s disease the hopes of a breakthrough in treatment looks towards advances in stem cell research. No-one had any idea how this would apply to Parkinson’s disease, but they knew that it is often mentioned when stem cell research is discussed in the media. Most people realised that offers of miracle cures tend to be over optimistic but admit that references to them in the media tended to attract their attention. Jean said that if her professor was to offer it she would be down there immediately as she really trusts him.
Gina was put off when she offered to donate her eggs.
Gina was put off when she offered to donate her eggs.
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I did, I, actually when it first came out I off-, because I was a bit younger, I offered them some of my eggs. I said, “You can have some of my eggs.” And they said, “It’s all pie in the sky. It’s, it’s, doesn’t work like that. It takes years to research these things.” They could, you see all these things on the TV. There’s, they think they’ve got a cure for this, they’ve got a cure for that, and it’s all just, it’s, it’s not ready. You’ve got to wait years. So, but I am quite interested in it.
No-one we interviewed raised any of the commonly aired objections to stem cell research.
Stephen thought that people would change their views on stem cell research if they themselves became ill.
Stephen thought that people would change their views on stem cell research if they themselves became ill.
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Whatever you can do to help people can only be a good thing. And like they want to know my opinion, opinions on stem cell research, and my opinion on that is, is that anything that helps anybody, why not go for you know? And some of the times the people that complain about stem cell research, when they get something wrong with them they go to the doctor to get pills but those pills have been tested and they’re complaining about the testing for things that help people, so that makes them hypocrites in a way, so I’m all for things that help people, you know, and modern technology’s a wonderful thing, and they’re always bringing out new things to help people out. So, in the whole I’m very grateful for everything that I’ve had done for me and I live each day for each day as they say and not look too far ahead and I’m really grateful to everybody that has helped me out with my Parkinson’s Disease.
Neil had been involved in a research project in which he was one of 10 people who were given an operation involving the drug GDNF, made in America. This was in some ways similar to Deep Brain Stimulation but instead of electric pulses the target area was flooded with the drug. The trial was stopped after two years of treatment because of side effects and failure to prove that the positive results were greater than those of the control group of patients. Neil was at first allowed to continue on the medication but eventually his treatment was stopped. He later went on to have DBS which was reasonably successful though he feels no way near so much so as GDNF.
Neil felt he had been very fortunate to be included in the trial of GDNF.
Neil felt he had been very fortunate to be included in the trial of GDNF.
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And he tried me on, must have been about a dozen other tablets, but none of them seemed to be working. And I, I just heard about this operation. It wasn’t GDNF, it was something else. And I, so I kept on to him, the surgeon, “Can I have that? Can I have that because I don’t want to be an old man.” And he said, “No, you’re still too young.” Eventually he referred me to a surgeon who’d done the operation, who’d done the operation and how can I put it? There’s always a consultant and a surgeon. I was referred to the consultant and he point-blank told me that I was too good for the operation. He went all through the, the benefits of this operation and then told me, “You’re too good.” But luckily the surgeon was next door and he said, “You’d be an ideal candidate for this, this operation.”
And then, so they put me on what they call 90 day trial. What they call themselves psychoanalysis, something like that. The person that tests your mind and make sure you’re, you’re sane. And you done tests like separating coins and, with one hand and clicking a counter with the other hand, and putting pegs in boards, and memorising numbers he said and you’ve got to say them backwards. And that was, that was hard because I was getting tired. And, and then the results come back through and he said, “Yes, we’ll, we’ll accept him on, on the course for this operation.” But I didn’t know that there was only ten people that were able to, that’s all they, they were allowed to do.
And so 90 day come, you go to hospital, they take you off medication. They do a video and they send you away again to do a six day and 30 day. Then on the 30 day one, they get you to sign all the consent forms but still tell you the, the morning of, before the operation you’ll go and do some more tests. “But you could still fail. If, if you’re good enough you could still fail. We won’t operate.” So then I thought, “Oh.” So I thought, “I can just do my . . .” I thought, “I’ll just do my best.” But what they don’t tell you is your best, they want the worst from you. I was thinking, “Oh, I got that right, got that right.” But I was getting it wrong. And the one I failed on miserably was the smell test. I couldn’t tell the difference between petrol and soap, because my sense of smell had gone and everything like that. And then, well he come up and said, “Go home and get a bag and come back in. You’re going down for surgery in a couple of days’ time.” So I talked to my family. They, they told me the risk, the hospital told me the risk that was involved, because it’s a new, such a new operation, there were risks that I wouldn’t come out, come out of surgery. I thought, “Well, I’ve got to go for it.”
Neil and the others who were on it were disappointed when the trial of GDNF was discontinued.
Neil and the others who were on it were disappointed when the trial of GDNF was discontinued.
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I think it was about a week or two weeks I noticed I could write more, I could keep it on the line. It was, it wasn’t getting smaller, it was getting, I could read it. I could do things like sensitive, turn over heavy milk bottles, turn tissues, whereas before I couldn’t do that. And I thought, “This is great.” And then he said, “Every month you’ve got to come . . .” I’ve got to go back. He said, “It lasts, it only lasts a month, then you’ve got to be topped up.” And then, “Oh, this is great. This is the cure.” And the company, the drug company who owned the, who developed the drug, they come down from America to see, to see us all, because they couldn’t believe the results. Because they always thought it would take about two to three years before you see any, any improvement and to see somebody in two to three months walking, doing things. Because they’re, they’re, they’re different tests from, in America. They weren’t convinced they had done it right in the hospital I was at. So they done all sorts of tests like finger clicking and touching your nose and doing everything like that. And they was amazed. She said, she even said, “Oh, it, it’s, it’s cured it.”
But, unfortunately, that, that went on for about two, no, was it? two years. I had my life back. And then all of a sudden we just got a phone call out of the blue from the hospital saying the drug, all top ups now had been suspended. They just pulled the plug on it. Of course we was all devastated. Thought, “What’s going to happen now?” But I, well, I was, I was one of the lucky ones, because whereas they used, because they’ve got a pump in them, they used to pump, they used to pump all the, the, the drug up to you, but they didn’t turn mine off. They used to, they had to turn everybody’s pump off and put some, what do you call, saline solution in, just to keep the, the pipes all washed and clean.
But for about three months I was going in there and I couldn’t understand why they was getting me in and just telling me to go home quick. But then I found out if I did stop they was topping me up all the time with this drug, which they shouldn’t have been, because they believed that if they had one person they could still show results. But eventually they was forced to stop. So, but all the other nine have had their pumps taken, all their wirings, but I’ve still got mine in. And then, that went on for, oh, about two years. And we was all, we was ringing each other up, we was all going, “How are you?” “Oh, I’m poor, I’m bad now.” And then they, they always said to us after the first operation, “You, if you want, you can always, if you feel like it you can always have the, the DBS operation. There’s no question you will get that.”
Last reviewed May 2017.
Last updated May 2017.
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