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Old 01-09-2018, 09:59 AM   #11
ashleyk
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Default Peg, Steve?

How many others on this forum have experienced DBS? Steve does not post much anymore but I believe he is doing much? better. Peg posted a lot before her DBS but rarely does now.
How many DBS candidates were turned down because of PD psychosis (my wife) and how many were accepted for DBS even if they did have any degree of PDP?
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Old 01-09-2018, 03:08 PM   #12
Daves1
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Quote:
Originally Posted by sim00 View Post
Hi everybody.
I'm back here to share my amazing experience with you, after more than 1 year from my DBS surgery.
I would like to embrace all of you and tell you that after DBS surgery, in July 2016, today (September 2017) I am not taking any medicine and I feel really good.
Today I'm 48, I have Parkinson's disease since I was 36 years old. I took about 1g of Levodopa, until the day of DBS, and today I take nothing.
From January 2017 I go to the gym every day, for about 2 hours, and from 84 kg I'm slim up to 76 kg.
I love you all.
where did you have it--what were outr promary symptoms before and is anything worse?--dave
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Old 01-10-2018, 01:49 PM   #13
lurkingforacure
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Default interesting research on DBS for dementias

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Originally Posted by ashleyk View Post
How many others on this forum have experienced DBS? Steve does not post much anymore but I believe he is doing much? better. Peg posted a lot before her DBS but rarely does now.
How many DBS candidates were turned down because of PD psychosis (my wife) and how many were accepted for DBS even if they did have any degree of PDP?
Ashleyk,
We too have psychosis and cognitive and memory issues. I very recently stumbled across a line of research using DBS for dementias including Alz and PDD. It is a very new idea, and one you might consult with your wife's neuro about. What I have found so far is that the procedure itself is safe and tolerated by patients with dementia, and that it can improve memory and some facets of QOL for some patients; however those benefits seem to wane about a year after the procedure, and from what I have read, were not that robust (and definitely not enough to transform someone who needed a caregiver into someone who could live alone). While the improvement wasn't huge, in my book, any improvement is still improvement

Unfortunately, I can't see our insurance company (or Medicare/Medicaid, depending on your situation) being willing to pay for DBS without a lot more research showing that the majority of patients not only improve, but improve enough to justify the risks and costs of the surgery. Just thought I would mention this. I believe the neuro heading up a lot of this research is Lozano, if you're interested.

Last edited by lurkingforacure; 01-10-2018 at 09:07 PM. Reason: clarification
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Old 01-12-2018, 02:49 AM   #14
sim00
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Hello to everyone. As soon as possible, I will upload some videos to show my current state of health. Next week I will ask the neurologist for my pre-DBS videos ...
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Born in 1969, diagnosed PD in 2007, first symptoms 2004. DBS in July 2016.
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Old 01-12-2018, 10:42 PM   #15
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Originally Posted by sim00 View Post
Hello to everyone. As soon as possible, I will upload some videos to show my current state of health. Next week I will ask the neurologist for my pre-DBS videos ...
That would be great! I am having the neuropsych evaluation for DBS on 2/2. may I ask what the target of your DBS was the Internal Globus Pallidus (GPi) or the Subthalamic Nucleus (STN)? It seems STN really works best for physical symptoms and reduces amount of meds required. However, STN has a much more negative impact on speech, cognition and
mood (depression) as compared to Gpi stimulation.

Can anybody share personal experiences?
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Old 01-13-2018, 01:51 AM   #16
sim00
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Quote:
Originally Posted by Canna View Post
That would be great! I am having the neuropsych evaluation for DBS on 2/2. may I ask what the target of your DBS was the Internal Globus Pallidus (GPi) or the Subthalamic Nucleus (STN)? It seems STN really works best for physical symptoms and reduces amount of meds required. However, STN has a much more negative impact on speech, cognition and
mood (depression) as compared to Gpi stimulation.

Can anybody share personal experiences?
Hi, my DBS surgery was STN type. However , after 18 months, I haven't any speech or cognition or mood problem. In any case, I know that neurologists do not perform DBS surgery, if the candidate suffers from any non-motor pathology related to PD.

However, this is an interesting link: GPi vs STN deep brain stimulation for Parkinson disease: Three-year follow-up. - PubMed - NCBI
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Born in 1969, diagnosed PD in 2007, first symptoms 2004. DBS in July 2016.
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Old 01-25-2018, 10:03 AM   #17
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hi
i know many who have PD.Some of them have had dbsMost of them were disappointed of their outcomes.I myself would never have it as mine is the stiff guy.In my area I think it is being oversold,another sign of how our care is going.No longer professional and patient.Now we are just customers .
I have had very good results over the last 7 years to use meds at a minumn and rely more on concetration and exercise
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Old 01-25-2018, 12:15 PM   #18
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hi
Now we are just customers .

I just spoke with a friend who is not levadopa responsive but exhibits classic idiopathic parkinsons sx....she went to an MDS at Oregon Health Sciences University (after seeing several other docs) and he is stumped- so he is recommending DBS but when she hesitated he responded with pressure saying that her doubt was not good and she should act quickly otherwise medicare might not approve her. I smell a rotten powerplay there. ) Now she is seeing a naturopath in Seattle that charges $200/half hour for a phone consult!!! The more they don't know....the more expensive it gets......

MD
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Old 01-29-2018, 05:31 AM   #19
proudest_mama
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Default the patch vs. DBS

Hi everyone,

I see my neuro on Friday and would like to be armed with at least some knowledge and information.

Recently I was at the hospital and a tech told me that her mother was put on the patch and said it was positively wonderful and she no longer has highs and lows like she use to.

Now I'm reading about DBS and how that is a viable alternative.

What is the success rate of DBS? Is it typical to be free of all meds afterwards?

I, too, am relatively young ... diagnosed 14 years ago at the age of 44, currently 57.

What are the pros and cons of each? Any answers before Friday are much appreciated.

Thanks ...
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