Hi! My dad is rigidity dominant. He experiences freezing when his meds are wearing off. He didn't qualify for FUS at Sonimodul, but my dad finally has his 2nd meeting with a surgeon, Dr. Munhoz, at Toronto Western Hospital here in Toronto. We have watched Dr. Mischely's PD School on DBS, and have come up with a handful of questions to ask at the meeting (see below!) Wondering if anyone has any lessons learned from their DBS surgery that they would be willing to share... things that we should certainly demand, things that we definitely should be aware of that the doctors might not bring up, questions we should ask... thanks for any hot tips!!
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- What kind of battery will it be? What is ideal, rechargeable or ones that can be replaced? What's the procedural difference? How will it affect the years to come?
- What is his experience with this surgery? What are his success rates?
- What are our goals? What are we targeting? Will be be doing one side or both?
- What is STN? What is Gpi? - risks / benefits of either?
- What are the odds of speech being negatively affected?
- Will it improve moments of low blood pressure? Freezing? Restless leg syndrome? Medication onset dyskinesia? Sleep? Digestion?
- Will he be asleep or awake during surgery? What do either entail?
- What does post-surgery care look like? What is the program / schedule for this? What does follow-up look like? How easy will it be to connect with someone if there are issues? What will maintenance look like?
- How will we safely reduce his meds? Will we be able to reduce his Neupro patch?
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pdkid
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Here is an interesting study that Munhoz was a part of...
"In the future, individualized models that incorporate advancements in mapping techniques with patient-specific clinical variables will likely contribute to the optimization of DBS target selection and improved outcomes for patients":
having had a couple interviews, and my friends experience I suspect that:
You will enter his office with all your great questions written down.
He will start talking and mostly to your father . He will ask many questions and will not be happy if you do the answering( big points lost). If he wants to talk to you, he will say your name. You will get a few minutes near the end if you were allowed into the meeting at all.
There will probably be several people at the interview and they will probably make a decision before you leave , no appeal.
Did they explain why your father was rejected before ?
The requirements :
Very healthy active exerciser , good heart etc
young ( below some age probably 70 )
very much in need of this operation with high potential for improvement
A fighter , who will not quit and is able to communicate and understand .
The purpose of the interview is to protect the hospital resulting in a low risk, successful, operation with positive results. They not much interested in you.
Yea, he "passed" the preliminary DBS interviews... the next few in Feb are going to be in-depth ones to confirm that he qualifies. Sonimodul rejected him for FUS, saying that because he has gait/freezing issues, my dad might be disappointed with the results... We told them we understood that it wouldn't "fix" this... but I still didn't quite understand why they didn't take him because from my understanding, he would still be relieved of SO MANY other symptoms, especially his rigidity, which bothers him the most. We feel lucky though, to have access to DBS, which will be covered by our Canadian Healthcare system.
Hello pdkid. I had DBS surgery at Western Hospital about 11 months ago and it was a very good experience. I was 59 and had Parkinson’s for 10 years.At the interview your father should have a list of questions. Short and to the point. There will be different doctors to talk. I found it beneficial to ask the Dr.s and neurologists the small details and leave the big questions for the surgeon. They are busy people and don’t want to waste time. Don’t get me wrong, everyone there was very kind and understanding. I think Dr. Munhoz is a neurologist. Dr. Lozano is the neurosurgeon that did my surgery. The surgery went well. I’d say I was partially awake for some of it. It wasn’t painful just scary. I spent 2 days in the hospital. The surgery has made a positive impact on my life. Do you live in Toronto?
Hi Gailsnail, Wow, this is really reassuring - - - thank you so much! I am glad to hear that the surgery made a positive impact on your life 🌸⭐ I believe my dad will be working with the same team, Dr. Munhoz and Dr. Lozano. Was it your choice to be partially awake or is that just how they do it? Will you need to do follow-up adjustments with your battery? I am in Toronto, my dad is nearby, in Thornhill. What about you? Thanks a lot!!
They decide when they need you to be awake or not. I felt fairly out of it most of the time. I remember the doctor asking me questions and holding my hand and moving my arm around. When I returned home I felt like it took me about a week to fully be awake. I just needed to rest.Did you know that the Chelsea Hotel has a medical rate? You just have to show proof. It’s a nice hotel and you can cab it to the hospital quickly. Be sure to speak to someone and ask about the discount and book ahead.
Wow, thanks so much for sharing your experience. It really is helpful in knowing what to expect. Also, that is amazing to know about the Chelsea Hotel...! You stayed there before the surgery then went back home to Burlington after being in the hospital?
Yes, my husband and I stayed there the night before, had a swim and a nice meal the night before. Then my husband stayed the two nights that I was in the hospital. The day that I came home we asked for a late check out so I could go back to the hotel and rest while he packed up our stuff. We had to pay extra $75 but it was worth it.
My husband had DBS surgery in 2019. He was 70 years old. He had difficulty adjusting his medication afterward, but this is very unusual. He cannot take Carbidopa/Levidopa as it gives him distonic cramps in his legs which are very painful. Right now, his additional Parkinson’s medicine include GoCovri, Xadago, and Neupro Patch. He has no visible tremors or on/off times. There is a Frequently Asked Question List for DBS on the website: michaeljfox.orgMy husband has the Abbott DBS which is not rechargeable. His neurologist preferred it at the time. Things may be different now. I like the fact that his device is MRI compatible. Good luck!!
MRI compatible! Good thing to consider! With no visible tremors or on/off times, seems like overall the surgery was helpful. Thank you and thank you for sharing!
I have not had DBS but have been considering it for some time. Here in Minnesota there are a lot of helpful classes for PwP to learn a lot about DBS before they decide if it's something they want to do or not (they were in person but now they're online). I attended a webinar this past week that had a Movement Disorder Neurologist & a DBS Neurosurgeon from the Mayo Clinic. They currently prefer the Boston Scientific device because of its directional lead (which apparently results in more precise programming). But of course that would likely depend on the experience of the surgeon in placing the leads. The Mayo surgeon definitely recommended a rechargeable device because otherwise the PwP would have to undergo surgery every 5 years or so to replace the battery/generator, & with each surgery there's a risk of infection. The webinar was sponsored by the Wisconsin Parkinson Association.
I found helpful information on the manufacturers' websites also - here is a link to the BostonSci DBS info: dbsandme.com/parkinsonstrea...
And I recently learned that the Parkinson Voice Project, besides being a nice resource for speech & swallowing therapy, also has a lecture series available - I have not watched any of these yet but there are a couple about DBS: parkinsonvoiceproject.org/L...
I am also looking into FUS so I'm curious why your father didn't qualify for that procedure. Best of luck to your father!
Hi JMSL, This is all very helpful information to have and consider - - - thank you so much, really appreciated! We will definitely take a look at them all. They didn't take him for FUS, apparently because of his gait/freezing issues. They were concerned that surgery wouldn't help this aspect of his pd, but we were ok with that, since it would essentially have relieved him of his other symptoms, especially his rigidity and dystonia. I forgot to mention up top, I think if we lived in Switzerland, and it would have been easy for my dad to have a lot of follow-up appointments at Sonimodul, they might have considered it further. I wish they would have taken him, but we are glad to have healthcare that will cover his DBS...! Let us know what route you end up taking... thanks and take care!
Just to give you an update! My dad had four very long "interviews" over the course of four days. This is all based out of Toronto Western Hospital. One with a psychiatrist to make sure the risk of him becoming depressed or anything was low; two with neuropsychologists to assess that he was at a good mental capacity/ no serious mental decline; and one "levodopa challenge" since his response to levodopa is how effective the DBS would be for him. This last meeting was particularly draining, as my dad's medication regime is a combination of Sinemet and Mucuna and they wanted to see what he was like on Sinemet only (as expected, was unresponsive). After an extra two hours of being at this last meeting, they finally examined how he moves with the mix of Sinemet and Mucuna. It seems as though it really is the mucuna that works for my dad, and the sinemet is only needed for the carpidopa. All this to say, he "passed" and he is on a DBS waitlist. We were given three neurosurgeons to choose from - - - Dr. Lozano, Dr. Hodaie and Dr. Kalia. We will meet our chosen neurosurgeon in three months, then about six months after that, the surgery.
We are allowed to change our minds and back out at anytime before then. We are grateful that he is able to have this surgery and that it is covered by the Canadian government, but we are still really scared about all the possible risks! For now, he will just continue on his supplement and exercise regimes and take one day at a time.
Hi there, would you mind exposing what you mean by levodopa challenge? “His response to levodopa is how his response to DBS would be?Would you mind please elaborating on that?
The "levodopa challenge" is a test to see how well he responds to levodopa. He came into the hospital unmedicated for at least 9 hours. They looked at how he talked, walked, moved his arms, balanced, etc without any meds in his system, basically in an "off" period. Then they had him take this meds, waited and watched the same movements while he was "on". DBS is as effective as how the meds work on you. So for people who are unresponsive to levodopa, DBS isn't really a good option. Hope this helps!
One more update! Here are the answers they gave us to our questions (I didn't write any of the answers down and this part of the meeting happened so quickly, so will likely revisit some of them to confirm answers and get more detail. I am typing this from memory so apologies for vagueness! Some questions were also neurosurgeon specific so will have to ask them later):
- non-rechargeable batteries need to be changed through brain surgery every 6 years or so, the rechargeable batteries don't need to be changed for 15 years or at all, but need to be charged 2-3 times a week. this means lying down on your back for 30 minutes with a charging pack on your chest.
- both sides would be operated on at once
- we will have to discuss whether we do STN or Gpi with the surgeon
- they cannot say whether speech will be affected or not. sometimes speech gets worse, sometimes it just stays the same.
- dbs would get rid of off periods, so the freezing would not happen anymore. dyskinesia should greatly subside or be gone. sleep should be improved. digestion stays the same.
- he would be awake during surgery. they would be communicating with him while it is happening.
- dr. munhoz would become his neurologist. post- surgery, he would need to visit the hospital once a week for at least a month; he would have regular, periodic visits that will slowly be spaced apart, until he comes in every three to four months, for the rest of his life.
- the neupro patch will likely be completely eliminated. they are unsure if it will be frequency or doses of meds that would be reduced, but meds will definitely be reduced.
Thanks so much! He is 69... will be 70 by the end of the year. He was diagnosed 13-14 years ago. I think we are both kind of scared about the invasive surgery, plus not thrilled about the risks involved, and about having hardware permanently installed, about the post-maintenance for life. He was refused surgery at Sonimodul... they were reluctant to operate on him because of his gait issues when he is off, saying that we might be disappointed with the results... we were willing to try anyway but they said they couldn't help. Part of me understands and trusts their expertise, and another part of me is wondering why they wouldn't just try, since his gait issues are not the only thing bothering him. Overall, we are trying to stay positive because if the surgery is successful, we know it will really help him at this point.
Thanks a lot... we hope so too! Apparently he is... Dr. Suneil Kalia at The Toronto Western Hospital here in Canada. We will meet him in three months, then surgery will be about six months after. They gave us three neurosurgeons to choose from. Our other options were Mojgan Hodaie and Andres Lozano. We are lucky that the cost of this surgery is covered by the government...!
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