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Old 11-17-2013, 05:16 PM   #1
bearman442
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Default Dbs

Hi everyone. I am being evaluated for the second time for DBS. First time was in 2006....Ok back then they said I was to "healthy". This time they are saying I am doing so poorly that they do not want to risk it... I say HUH? let me back up a bit. I was diagnosed in the summer of 2004 with idiopathic PD. I started on Stalevo50 and Requip. Did fairly well. Since then I have had a single and a double anterior cervical fusion. A lower lumbar fusion with Lamonictomy SP? I have DVT and several blood clots plus they found an aneurysm in my left leg. I have been diagnosed with, "Stiff Persons Syndrome", possible MSA or Multiple system Atrophy. Which is a nasty grownup version of PD. Usually the way they figure out that you actually have it is when they are doing the autopsy. I probably don't have that because they tell me you only live an average of 6-10 years after onset...I do not know I still have about six months to go before I hit ten. Oh yes. One of two major issues is the fact that I take warfarin for my blood clots and that may put a damper on any brain surgery since I need to be off the warfarin for 8-10 days before surgery. Second! I have to have an MRI done on my brain before the surgery as well. Guess what? Thanks to the neck and back surgeries. I can' get my head low enough to go in the machine. Possibly under anesthesia. PLEASE DOES ANYONE HAVE ANY THOUGHTS ON THIS. I would appreciate any feedback... I should have mentioned that I still do not have an essential tremor. I know that every ones PD is different but the Docs are saying is that this is what DBS is good for. My main issues are my gait, balance, and severe dyskinesia at times which the only one that DBS is supposed to help with is the dyskinesia. However I have talked with 6-8 DBS patients and every one of them has told me that their gait and balance was vastly improved. Any thoughts ? I am seeing a second doctor in a different hospital group for a second opinion. Sorry for the book.. thanks for your feedback Michael
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Old 11-17-2013, 07:04 PM   #2
vlhperry
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Default Bearman: sounds like you live in the appalacions

Hi Bearman,

If You believe DBS is for you and had an young onset case, fight for it. Get a DAT scan to find out if your Brain is able to uptake Dopamine correctly. If the DAT scan is inconclusive, consider getting a DNA test of your Parkin gene. As high as 50% of young onset patients have one. With these go see your neurosurgeon with both results and ask him/her why you don't qualify. If you come armed to the teeth with knowledge you can make them work for you, rather than vice versa.

Neurologists determine which patients will qualify based on studies and the wisdom of clinical experience. They have a tendency to "group" patients into different slots. You have to pull them out of the slots and treat you as an individual. You must convince that your values include value of all human life and understanding of the possible consequences of surgery.

I was told that I scored too high on the comprehensive test to have PD. I was diagnosed as having delayed stress syndrome. This was after 15 years of diagnosis. I gathered more evidence of the defining factors of PD and was able to prove my PD diagnosis as much more likely.

The neurologist who changed my diagnosis was right on the money for methodology. He is not to be faulted. Only you know yourself. A second opinion is an excellent start. If needed, be prepared to respectively argue for how you believe your treatment would be best.

DAT tests should be approved by your insurance provider and my genetic test was also covered.

Get Him you Grizzly,
Vicky
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Old 11-17-2013, 08:04 PM   #3
made it up
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Hi and welcome,
Forgive me for asking so many questions but here goes.
Will the neurosurgeon perform DBS or not?
Did you respond when given a diagnosis of PD to levodopa as in an obvious depletion of some or all of your PD symptoms?
As far as the surgery goes can you be awake for a fair amt of time on operating table and be able to perform the various tasks as they ask?eg wiggle toes, speak, finger taps etc etc.
The fact that you've had a history of clotting problems and need an anti coagulant alone may or may not be a deciding factor as well as what could possibly be an unclear diagnosis of PD when perhaps a Parkinson plus diagnosis is a query for them.
Talk it over with your neurologist he'd be the one to have the knowledge and notes from the surgeon to help you decide.
Best wishes.

QUOTE=bearman442;1029963]Hi everyone. I am being evaluated for the second time for DBS. First time was in 2006....Ok back then they said I was to "healthy". This time they are saying I am doing so poorly that they do not want to risk it... I say HUH? let me back up a bit. I was diagnosed in the summer of 2004 with idiopathic PD. I started on Stalevo50 and Requip. Did fairly well. Since then I have had a single and a double anterior cervical fusion. A lower lumbar fusion with Lamonictomy SP? I have DVT and several blood clots plus they found an aneurysm in my left leg. I have been diagnosed with, "Stiff Persons Syndrome", possible MSA or Multiple system Atrophy. Which is a nasty grownup version of PD. Usually the way they figure out that you actually have it is when they are doing the autopsy. I probably don't have that because they tell me you only live an average of 6-10 years after onset...I do not know I still have about six months to go before I hit ten. Oh yes. One of two major issues is the fact that I take warfarin for my blood clots and that may put a damper on any brain surgery since I need to be off the warfarin for 8-10 days before surgery. Second! I have to have an MRI done on my brain before the surgery as well. Guess what? Thanks to the neck and back surgeries. I can' get my head low enough to go in the machine. Possibly under anesthesia. PLEASE DOES ANYONE HAVE ANY THOUGHTS ON THIS. I would appreciate any feedback... I should have mentioned that I still do not have an essential tremor. I know that every ones PD is different but the Docs are saying is that this is what DBS is good for. My main issues are my gait, balance, and severe dyskinesia at times which the only one that DBS is supposed to help with is the dyskinesia. However I have talked with 6-8 DBS patients and every one of them has told me that their gait and balance was vastly improved. Any thoughts ? I am seeing a second doctor in a different hospital group for a second opinion. Sorry for the book.. thanks for your feedback Michael[/QUOTE]
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Old 11-18-2013, 07:57 AM   #4
soccertese
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here's a resource, haven't studied DBS since not at that point yet but they seem to put out a lot of info
http://www.centerformovement.org/

another source, dr. okun imho seems to be a proponent of DBS. I read his new book and he discusses it in length. not pushing the book but published recently.

sometimes you can get information overload. but DBS isn't something to take lightly, seems what happens after the surgery, follow up visits, programming skills of the clinicians, is just as important.

http://forum.parkinson.org/index.php...sk-the-doctor/
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"Thanks for this!" says:
vlhperry (11-18-2013)
Old 11-18-2013, 06:04 PM   #5
damon4309
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Hi
I am new to this forum. Have dx 8yrs 13 years symtoms 13 years.

currently working on the requirements for dbs. I can not live like this.

More to come

Thank you all

Damon
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Old 11-18-2013, 07:31 PM   #6
Tupelo3
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Default MJFF webinar this Thursday - Refining Deep Brain Stimulation

For those interested in DBS, MJFF is hosting a webinar this Thursday at 12pm ET. Online registration:
https://www.michaeljfox.org/foundati...in-stimulation
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soccertese (11-18-2013)
Old 11-18-2013, 09:15 PM   #7
johnt
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Damon,

Welcome to the forum. I'm 8 years post diagnosis too.

I look forward to reading your posts.

John
__________________
Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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