BBC Points West carried a news item this evening 26/4/2022 that highlighted a new approach to DBS surgery that it is thought to be less intrusive. They interviewed someone from Parkinsons UK whose name i sadly did not catch and explained that trials had been undertsaken and interviewed a patient who said he had experienced significant improvements in his condition. They sais that trials were ongoing and that if successful the procedure could well be available to sufferers next year. finally they said more information was available on this website but i can find nothing about it. Admin please help as my wife is a sufferer
You can learn more about new therapies as well as local resources by calling our helpline at 0808 800 0303. Our advisers are kind, supportive, and highly knowledgeable, and they are ready and willing to help.
Jason. I think there is some confusion here. The Ponts West presenter said there would be a briefing based on the subject discussed on their programme and that it could be found on this website
This the link to the article
Thanks Hellsbells for the link. I was though expecting Parkinsons UK to have something on their site
Hey Davech, PUK wouldn’t have this info on its site yet as it’s an early trial system not available to us at this moment. It looks an improvement on the current DBS system so fingers crossed the trial is successful and the good news is as it cuts the current operation by half there would be a financial benefit for the NHS to approve. Some great work being done by doctors and scientists to help us, however it all takes time which is very frustrating but something we just have to deal with. This current trial won’t be complete till 2024, then will need to go for CE mark approval then FDA pre market approval so we are talking years before this type of DBS will be an option.
Thanks Hellbells for the update. Points West reference was misleading then, Sad to hear that this potential development is so far off.
Hi. I am one of the volunteers trialling the new DBS design. I had the operation in March and it was switched on last week.
My neurologist had referred me for DBS and after I’d been assessed, I was offered the opportunity to take part in the trial. I jumped at the chance because having the wires and miniaturised battery under the skin of my scalp seemed so much easier to live with than wires under my skin, down my neck, and a battery under the skin above my left breast.
Having said that, if I had not been offered a place on the trial, I would have happily had DBS as available now. I’ve met several people with DBS and none of them have regretted their decision. On the day I had the operation, a friend with DBS was also being operated on, having his battery replaced after 10 years.
The new DBS seems like a great advancement.
I know it’s early days but have you seen a great improvement?
If you Google parkinsons daily mirror it comes up there instead of dbs in chest it’s about putting in head making the operation alot faster.
I believe this was a trial, which is now over, which showed a new smaller device which didn’t take so long to insert into the brain. It’s for your wife’s neurosurgeon to decide wether she is suitable for it.
Hello all it is a trial but still going on ,I am the person shown on tv .I had implant in head 18 months ago all going well
Hi, I’ve put an update on my DBS under the SPARKS trial on another thread. My quality of life has improved enormously.
Sorry for the six month delay in replying. Briefly, the improvement has been remarkable, given me several more hours a day in which I can do things.
Hi, could you provide the link to that update, please? Thank you.
Hi Tanala, welcome to the forum. To my shame, I can’t find the thread. What is it you would like to know?
Hi Jane, thanks for replying. It’s encouraging to hear that the new DBS device has improved your quality of life. I would love to hear you expand a little on your post-surgery experience, as such positive feedback from yourself as a trial participant gives me hope of having a less invasive surgery when it’s my time to undergo DBS. I’m 5 years in and levodopa is beginning to lose its predictability.
“…, then will need to go for CE mark approval then FDA pre market approval so we are talking years before this type of DBS will be an option.”
Couldn’t the procedure be first used in the UK while awaiting FDA approval?
Hi Tamara. It is now eight months since I had the operation. What follows is as full a report as I’m capable of:
I was diagnosed in 2017. I appear to have an aggressive form of PD. Since diagnosis I had needed a revision upwards of my meds at least every six months. By January this year I was on five tablets of 125 levodopa (in Sastravi), another 100 mg of levodopa in Madopar slow release plus Pipexus (a dopamine agonist, and Xadago (Safinamide) an MAO-B inhibitor. Despite this, I was still getting ‘off’ periods. My worst symptom, however, was the dyskinesia which was a side-effect of the levodopa. The dyskinesia interfered with almost every aspect of my life. I lost 30 lb in weight, mainly because I could not stop moving, even in my sleep. I could not concentrate on anything, and was very limited in what I could do physically. So, when I was offered the DBS it seemed a no-brainer (excuse the pun).
Taking part in the trial rather than having the regular DBS was an easy decision too: a safer operation and less to go wrong afterwards.
Since the operation in March I have been on 400 mg of levodopa a day ( Sastravi 50 x 6, and 100 in Madopar SR.) That is 55% of my previous dose, enough to significantly reduce the amount of dyskinesia that I get, (although since I can get dyskinesia at the same time as being off, it isn’t quite as simple as more levodopa = more dyskinesia.)
My stimulator (stim) has been set with 2 programmes and I can choose between them. I can also alter them up and down, to a limited degree. If I am ‘off’ I can increase the stim programme, and If I have dyskinesia, I can reduce the programme.
If this seems rather vague, that’s because I haven’t got a clue exactly what the stim does. It is a sort of pacemaker for the brain. That is all I know. I have an arts degree, last studied science when I did O level biology, and now I’m 70 I’m really too old to start studying neuroscience.
But it does work most of the time. I don’t dial the programme up or down often, because most of the time I am symptom free, or near enough. When I do, it is usually first thing in the morning, when I wake up feeling very off, then when my first dose of meds for the day kicks in, I have a bout of dyskinesia. If I first turn the dial up, then down again I can considerably reduce the symptoms, sometimes get rid of them completely.
I now have many more hours in the day when I can engage in normal activities. I’ve been doing some house decorating, we’ve been away for a couple of short breaks, and I’m able to do my hobbies, writing and knitting. My husband continues to do the cooking and most of the housework, but that is partly because of his anxiety about me falling.
I’m also finding it easier to exercise. I do three classes a week, one Pilates and two Parkinson’s exercise, plus a Parkinson’s dance session if I can fit it in, and I also try to go for a walk every day and use an exercise bike a couple of times a week. The dyskinesia played havoc with my exercise routine, but it only occasionally hampers me now.
On the down side there is still an unpredictability of my symptoms which makes it difficult to plan ahead. I have the occasionally bad day, or even a bad week, when there is more off time, or dyskinesia. We’ve discussed having a holiday abroad, but I might find it difficult to cope with a long train journey, or having to vacate a b&b for a particular time.
Eight months since the op, this is the longest I’ve gone without an upward revision of my meds since I was diagnosed. However, I am now getting some off time (not always responsive to the stim), and less dyskinesia. In other words, my PD continues to progress.
I don’t find the stim at all difficult to manage. I was told that the battery has to be recharged more frequently than with the chest-implant version, but I don’t find it inconvenient. I find I have to recharge for about an hour and a quarter every two days. I usually do so while watching t.v. in the evening.
I am very conscious of the wires under the skin on my scalp. My hair stopped growing for several months, which was unsettling, but has gone back to normal now. There are lumps where the wires go into my brain and over the stim. Of course, there are actually fewer wires than there would be with the chest implant. Although I can feel them, the wires are not visible to anyone else.
I have not experienced any physical pain or discomfort caused by the stim. The operation was pain free too.
Wow, thank you so much @Jane_L for sharing your DBS experience in such a honest and comprehensive way. It’s music to my ears when you say ‘…most of the time I’m symptom free, or near enough.’ I’d gladly settle for that!
I feel encouraged that this clinical trial may just lead to an enhanced DBS procedure that involves less trauma and delivers more immediate benefit for patients.
It’s wonderful to hear that you’ve got to enjoy life again @Jane_L, and I wish you continued and sustained improvement.