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01-09-2018, 10:59 AM | #11 | ||
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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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01-09-2018, 04:08 PM | #12 | ||
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Quote:
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"Thanks for this!" says: | sim00 (01-12-2018) |
01-10-2018, 02:49 PM | #13 | ||
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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 10:07 PM. Reason: clarification |
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01-12-2018, 03:49 AM | #14 | |||
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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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Sim00 Born in 1969, diagnosed PD in 2007, first symptoms 2004. DBS in July 2016. |
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01-12-2018, 11:42 PM | #15 | ||
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mood (depression) as compared to Gpi stimulation. Can anybody share personal experiences? |
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01-13-2018, 02:51 AM | #16 | |||
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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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Sim00 Born in 1969, diagnosed PD in 2007, first symptoms 2004. DBS in July 2016. |
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01-25-2018, 11:03 AM | #17 | ||
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Junior Member
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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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"Thanks for this!" says: | moondaughter (01-25-2018) |
01-25-2018, 01:15 PM | #18 | |||
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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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Smooth seas do not make skillful sailors.... Nature loves courage. “The day science begins to study non-physical phenomena, it will make more progress in one decade than in all the previous centuries of its existence.” ~ Nikola Tesla |
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"Thanks for this!" says: | john1947 (01-25-2018) |
01-29-2018, 06:31 AM | #19 | ||
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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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Terri People will forget what you said, people will forget what you did, but people will never forget how you made them feel. Quoted by: Maya Angelou (Reader's Digest Oct. 2006) |
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11-28-2018, 05:36 PM | #20 | |||
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Hello everyone, a brief update of my health conditions: after 28 months from DBS, I feel very good, I don't take levodopa or equivalent, I work a lot, I do sports regularly, I have a regular life.
Thanks DBS.
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Sim00 Born in 1969, diagnosed PD in 2007, first symptoms 2004. DBS in July 2016. |
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