Whilst I’ve read dozens of posters extolling the virtues of DBS here on the site and have witnessed many stories on YouTube similarly telling of good things, the PWP that I know personally who’ve had it haven’t been so encouraging. 😕 Guy 1 was hoping to reduce his meds but has ended up taking the same as before the op. Guy 2 had a stroke and is in a poor state. Guy 3 was a really nice person but following DBS has become violent, bad tempered and his family are thinking about placing him in a care home. Such results naturally make me reluctant to consider it when the time comes but I’m confused as to why some have their lives changed for the better while some are left with debilitating after effects. The inconsistency of outcomes is surprising in this day and age and as I said, leaves one pondering whether it’s a viable option. Are the poor results down to luck or surgical error? Any thoughts/observations on this very welcome 🙏.
DBS lottery: Whilst I’ve read dozens of... - Cure Parkinson's
DBS lottery
Device manufacturers and surgeons are not exactly anxious publicize the risks:
aboutlawsuits.com/deep-brai...
"The U.S. Food and Drug Administration (FDA) issued a Safety Communication this week, warning patients with Parkinson’s disease who use implanted deep brain stimulation devices to exercise caution during when partaking in water-related activities, such as swimming or even bathing."
This thesis contains a list of on point references:
arno.uvt.nl/show.cgi?fid=14...
"Several case studies suggest that DBS may, in certain cases, lead to changes in behaviour, mood, or cognition which might result in changes in their “personal identity”.3... dealing with DBS patients who are due to the treatment no longer capable of at least minimally rational decision-making...
first clinical finding that has studied the non-intended side effects of DBS was conducted in 1997 by Limousin et al.25 Back then, the results were mostly positive. In 2002 however, a review of Woods et al. evaluated many papers about DBS and the findings of those studies that aligned were improvements in self-reported symptoms of depression and a diminished verbal fluency. Since 2001 more studies reported cognitive impairments: general cognitive decline, impairments in executive functioning, attention, working memory, mental speed, response inhibition, verbal memory and verbal fluency. A meta-analysis published in 2004 showed that the most commonly observed psychic sequelae were cognitive impairments by 41% and second most depression by 8%.27 Considering the scope of this thesis -the influence of DBS on the behaviour of a patient and the liability issues -the focus will be on these cognitive impairments that cause a change in behaviour ... Literature shows critical comments concerning the substantial proportion of patients with severe and lasting behaviour disturbances, which were not present in the final pre-surgery phase.31 .. alarming psychiatric disturbances ranging from hypomania to suicidal ideation and suicide. 33In short, the following side effects were found in studies 34:
•Side effects in influencing mood and behaviour: hypomania; this occurs early after the intervention and may be dangerous because of impaired judgment of the own ability and limits.
•Suicidal thoughts: some studies have found elevated incidences of suicide, however a direct association with DBS surgery was not found in a recent prospective study.
•Side effects in influencing moral Competence and personality: this side effect raises the most ethical and legal issues. The influence on behaviour may effect decision making which can have a big impact. Many relatives have reported reckless and risk seeking behaviour that lasts for a long time."
Well worth reading on from section 2.2.1. pages 18 - 22; and 43-44.
Thanks a lot Park Bear 😊👍
My husband had DBS at Bristol operated on by Professor Gill in 2005 age 55. At the time it was quite rare but they gave him it because he had to stop taking dopa agonists because of the dreadful compulsive behaviour side effects he was having. There was immediate result in tremor but it affected his walking. Nothing could be done. It was just one of those things. He was able to reduce his medication For the past 10 or so years he has been going for reviews to Royal Hallamshire Sheffield. The DBS nurses there are wonderful. They are doing a new Boston version which they say is very good. It was devised in America and Ireland. It is the latest improved DBS. My husband is definitely glad he had it ( Medtronic one) and I can't honestly say I have seen a massive change in his personality. He was diagnosed with PD 26 years ago and in normal times we go abroad 3 times a year. That probably might not have been possible without DBS. His med regime is mucuna with a 10 by 100 and a 25 by 100 sinemet 3 times a day and 2 CR for bed. Hope this helps.
I am willing to bet very very few 80 year olds with PD 25 years are going abroad 3 times a year. Something must have gone right.
Haha. He's 71.
Hi, was wondering if during security checks the officers do manual search on your husband, or does he go through the metal detector gates? Thank you
He shows a card to security and they search him. No metal detector gates because have to be careful of magnets with DBS, at least the Medtronic one.
That’s very encouraging but like I said the range of outcomes is surprising given the technology at our disposal. What’s the name of the new device? I’d like to research it if possible. Thanks 🙏
She is likely referring to the 'Vercise Genus'.
Jeeves, if you are considering DBS I’d try to find people who have been treated at the hospital you would go to and find out how it went there. In the UK I’d recommend the National Hospital in Queens Square but I even heard about someone having DBS there and not being given access to his meds after surgery by the nurses. Not a long term problem but quite unpleasant anyway. Last time I saw my neural he said there was a huge backlog with the DBS waiting list because of covid. Several years I believe.
Is it possible for someone who has had FUS PTT to later on have DBS If they wanted to?
Thank you 😊
I’m okay currently Trixeedee. Just surveying the landscape but I’d definitely do FUS if I could ever afford it.
It's called Boston Scientific. There are posts on Parkinson's UK forum. I know Sheffield Hallamshire does it.
Thanks Jeanie
One thing that bothers me is FUS can't be undone whereas DBS can be turned off or removed. So saying, if it goes wrong it seems turning it off doesn't help as these poor people have shown. Where are the women? These stories are of men, aren't the girls going for DBS too? Do they have better luck? I was strongly considering it for later this year.
I know of a woman in Australia who had terrible mental health issues after DBS and couldn’t get it removed. Turning it off didn’t stop the symptoms. She’s in a care home now. DBS can’t be removed without damaging the brain. And switching it off doesn’t get rid of side effects if it doesn’t work well.
Jeeves, if you want to chat with a multitude of YOPWP who have had DBS, I highly recommend you visit the FB group Very young onset PD. There has been a recent discussion on this and a few people have had it very recently, one just 5 weeks ago. Their image (to identify the group easier) is young MJF in sunglasses in a convertible.
Thanks for the suggestion 😀. Appreciate it.
I read your profile btw about giving up the dairy, gluten etc. Have these measures had any effect out of curiosity? And it’s okay to say ‘no’ if that’s the case! 😂
Giving up gluten definitely has made a difference. Less aches. Sugar and dairy no immediate difference that I can feel. But I’m doing it for long term protection as it is recommended by many doctors.
Good for you! Hard going I think but I’m with you on the fasting. I go for a 20 hour window and a 48 hours once a week. I’m going to give it a couple of months and if no symptomatic relief may try eating as many Easter Eggs as I can steal from my children 😂.
You have a good sense of humor!
It is timely that I happen upon your response as I was just watching my family eat the muffins I made and the apple crumble I baked while I drank black coffee with mannitol. I’m so jealous of the food they get to eat. My pizza dough is rising. And brownies will go in the oven later. I day dream of the day when a disease slowing treatment is found as I intend on celebrating by stuffing myself with all the food I have missed.
When I picked a neurologist after my PD diagnosis (eight years ago), I signed on with one who worked with the group at Mass General Hospital in Boston, where DBS is us. The first neurologist I saw did not mention DBS, but when he moved on, his replacement started with DBS. Since my father had been the victim of the guy who invented the lobotomy by sticking an ice pick into an eye socket and destroying parts of his brain, I am skeptical of anything to do with brain surgery. Or as I said to the neurosurgeon, "You want to stick what, where?"
Dr. Cosgrove at MGH gave me a very good explanation of DBS, and provided names for me to call. In the end I spoke to 12 PWP and 10 were glad they had the procedure. I was beginning to think hard about it, and then I found better information on Focused Ultrasound (FUS). It is, some say, one-fifth as expensive with almost no surgical risk, since there is no "cutting." It has been used for essential tremor for years (Dr. Cosgrove said he did a lot of that, but was not enthusiastic about its efficacy for PD). FUS has now been approved in the US for PD, one side only.
Why does DBS, which stimulates the brain do roughly the same thing as FUS, which essentially bakes small sections of it? I have been unable to get an answer I can understand. Then I found that there are three different locations treated with FUS. How does one decide which one?
Based on the limited research I've done, the leader in this field appears to be Sonimodul in Switzerland. They use FUS to interrupt "...the pallido-thalamic pathway without touching the thalamus." They can do both sides (not at once); but you have to pay cash. About $40,000 US per side. They claim their procedure has a long-term efficiency of "...60 -70% mean relief of all Parkinson's symptoms, with a stability documented over five years in one of our studies."
i am, unfortunately, unaware of any efforts being made to bring this procedure to the US.
Thanks for your input and observations. I’d like to undergo FUS but the price is so demanding 😥. I’d feel sorry for what my family would have to forgo in terms of holidays and other things just to offer me this opportunity.
A trial in starting in the US next month for PTT what is done at Sonimodul
clinicaltrials.gov/ct2/show...
Reading the exclusion criteria, makes me wonder if normal people should participate rather than PwP!
So many are interested. Worth it's own thread?
Hi Jeeves, here Ellen from Holland.
I had DBS almost 8 years ago and i thought it would change my life and it did, but not in the way I expected it to. Like you i have read a lot of positive stories but mine was not. It took 3,5 years to finding the right programme for me and i was so sick and tired of it all, I couldn t believe this was happening to me, Parkinsons since i was 32 years and then this: these were the worst years of my life and yes if i would have died then it wouldn t even bother me. FInally when we decreased the frequency and things returned to be more or less normal.
So think twice. I know it s not common what i have been through but it can happen to anybody.
How awful 😞
similar to me. diagnosed at 37 dBS at 50, 3-5 years later and I finally feel a bit like myself. Hang in there Ellen.
Thanks
Do you now feel better than before DBS and it was a matter of finding the right program? Thanks
How would the doctors respond if you insisted on an adjustment every few weeks instead of every few months?
With the purchase of a longer boat?
Ha. Good one.
I was diagnosed at age 40 in 1995. I had DBS Surgery at Massachusetts General Hospital in Boston 10 years ago in 2010. I had a severe tremor on my left side for 15 years before the surgery. It has been gone since. I did not reduce my meds. I had a severe case of a delirium two years ago. I am fine now. I have reduced my meds. I have not had any ill effects from DBS.
Where were these surgeries done? All with the same surgeon? We have a friend who is seriously considering DBS. Thank you!
Mine was done in the Hague, Netherlands.
I wrote a very short book about my DBS experience called Aliens in the Attic. 1 in 5 have complications with speech and balance... that must be the other guys, not me.. . I was wrong. Also they did phsycological tests before but not after...hmmm
Hey mate, are you getting worse ?
Not terribly Aaron but to an extent I guess. That’s probably to be expected as come October it’ll be my 6th PD birthday 🎂 (yay😂). But the drugs and Mucuna work well and I have no dyskinesia luckily. Fatigue is an increasing element of my experience these days. Oh and muscle pain, but I can still get around well, able to exercise etc. How’s yourself?
I started down the path of DBS in 2019, based on what has happened I regret deciding to have the procedure. Why? Infection, multiple more surgeries, I'm up to 7 in less than two years. Change in mental state, loss of ability to do a job I loved, which has resulted in loss of identity, deterioration over the last few weeks has been massive, this morning meds and system running I'm not able to walk, pain is no friend, the emotional toll is at the point of overload, so why am I posting here, be very careful if you choose DBS, do not make up reasons for having it like I did. I hear about the good stories, every person I know that has had the procedure has had issues, some minor some major, do not brush them off, ask more questions. For me DBS has been a disaster, I have so little energy, I'm apathetic about life and looking forward to nothing as nothing is pain free. Apologies but be careful, it is a life changing procedure either way and there is no guarantee.
Wow 😳. Do you know where it all went so wrong? Was the team experienced enough and where did this operation take place? Thanks for the information
I was very sensitive to voltage, to the point the that initially mistakes were made, but after the first infection was dealt too I was doing well, I had 3months where things were OK or better than OK, then the second infection, more surgeries, system reinstalled, minor bleed after surgery, since then it feels like I'm going mostly downhill. The country I live in only has the one location that DBS is done, they are experienced but I got unlucky with infections, the early settings causing serious mental health issues, and so on.
What a mega bummer. So sorry to hear this unfortunate news. Hope that you somehow manage to get out of the wood and occupy a better place as time goes on. 🙏
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