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WindsongMoonChild

4-Year DBS Follow-up

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I agree Doug, I want to know both the good and bad about the operational aspects of the DBS....... as to battery? Like Kim, I will go with the non-rechargeable for my reasons stated above.

 

Coach...... I am SO glad to hear that everything went well. I know they have to allow everything to heal..... but having to wait a whole month? I'm not looking forward to that....sigh

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Kim, do you set off an alarm at the airport?  Just wondered if you tell them in advance of your hardware!

Sheila, I confess, I've been too chicken to find out!  I owe my family a visit back home (England), but I've been avoiding flying since I had my DBS surgery!  I'm afraid Homeland Security will think I'm a different kind of underwear bomber and I'll wind up strip searched or something.  

 

I'm a big baby.

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I just hope that when it happens that I won't have to carry around a  pack of AA batteries ! :-P Now that there's funny

Five minites to type a post, thirty minites to try and correct it 

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"Coach...... I am SO glad to hear that everything went well. I know they have to allow everything to heal..... but having to wait a whole month? I'm not looking forward to that....sigh"

 

Michael,

I totally agree!  Speaking from the other side of things this time.  But, having had the surgery, waiting a month was actually a good thing because it gave me some much needed healing time.

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Oh, I do know this Sheila... every month when I'm in court, I go through the security "bridge" thingy and I set it off every time.  But, I am known there and they expect me to ring their bells, so they just wave me on through.

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Coach,

 

I'd be interested to know if Medtronics has updated their video on the use of the DBS.  The one I got advised that I could turn on/off, up/down as and when I needed to do something (like write)... but, those instructions are for Essential Tremor, not PD!  After watching the video, I called the Medtronics rep and asked him if they really meant that I could just turn it on/off/up/down as I felt the need arose and he couldn't say "no" fervently enough!  So, if your DW has a Medtronics unit and it comes with a video--watch it with a grain of salt in your pocket, because it may be aimed at ET, not PD!

 

Kim

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Same controller. I was just looking at it. Since it will be three weeks from today I will study the booklet more later so I don't forget. Also, we will need to carry around aaa batteries for the controller. Rayovac is what it came with. :D Maybe Duracell to replace :)

 

She looked much better at lunch than when I left this morning. I am glad we had someone staying with her as well as one son since he has not left yet for college.

Edited by coacht

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Kim;

How long did it take you, from the time your Dr. first suggested DBS to you, till you were in the hospital getting it done? also, how long between your first surgery and the second for the battery? Also I understand that sometimes, they do both surgeries at the same time... your thoughts?

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Kim;

How long did it take you, from the time your Dr. first suggested DBS to you, till you were in the hospital getting it done? also, how long between your first surgery and the second for the battery? Also I understand that sometimes, they do both surgeries at the same time... your thoughts?

It took about a year from the time my MDS suggested I might be a candidate for DBS to the point of actually having the surgery.  During that time, I was vetted by a panel of experts who either examined me in person, or saw me on video--both medicated and un-medicated.  The final decision (as to whether I was a candidate or not) was made by a panel of 27 experts (ranging in expertise from neuropsychologists, physical therapists, neurosurgeons, and several MDS's) all had to come to a unanimous decision and, only when they had, was the preauthorization submitted to the insurance company.

 

My neurosurgeon told me that, at one time, they used to do all three surgeries on the same day, but they ended the practice because it was too hard on the patients and the surgeons!  Having had the three surgeries, I can see why.  In fact, I find it almost impossible to believe they ever did all three procedures on the same day!

 

The three surgeries were each a week apart.  Phase I, they placed the anchors in my skull.  Phase II was the placement of the leads into the brain and testing the results of the placement.  Phase III was placing the battery and running the wires down my scalp, neck, and to the battery in my chest--this is the surgery that causes the tingling and numbness in the scalp and ear (they tell me it's due to the wires being run so close to nerves).    

 

The actual brain surgery (Phase II) took about six hours.

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I have to say that it takes courage to have DBS surgery.  I'm not sure that when that day comes that I'll be able to allow someone to mess with my brain. I guess I'll just have to cross that bridge when I get to it. 

 

Kevin

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I was wondering, because a few of the "personal stories" on the Medtronic site (and others), talk about it only taking anywhere from approx. 2-5 months from first suggestion of DBS to first surgery.

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Kevin, the bridge is not nearly as hard to cross as one would think. when the time came, it took all of about 15 seconds. Then I looked back and said to myself, CRAP, I can't believe I just said "yes" to getting holes drilled in my head. Then I had lunch..........

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Respectfully Kevin, the decision in favor of a surgery with a dramatic success rate that buys some time and relief from daily pain and misery comes easily to most rational men and women and I suspect you'll be among us.  Distonia so intensely painful that you'd as soon have a stump where your arm used to be, an inability to get out of bed unassisted but for very limited periods in hopes of making it to the bathroom on time (a hit or miss proposition), cleaning yourself after defecating not possible, car trips to doctors app'ts interrupted by the need to change clothes assuming you are not constipated.  Restaurant dining, movies, parties....no longer possible.  Routinely biting your own tongue when you chew food at home to the point it bleeds.  Breathing problems causing you to feel as if a tight band around your chest is a constant companion.  Realizing you are an imposition on your wife and loved ones and wishing for them to have a happier life than play witness to your demise, looking on helplessly and in horror.  Inability to focus (and concentrate) to glean more than 25% of the news items in a 30 minute news cast.  Watching as funds intended for one's children's college education dwindle as they are consumed with your care expenses.  Oh yeah, PD is not for sissies as it grinds the dignity and any semblance of comfort through medication out of the afflicted.   DBS can forestall such certain and daily misery.  It has no down side in my opinion.   Just a thought.   Best to you.

 

   Roger

Edited by Rogerstar1
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Amazingly, only seven days after the second surgery she substitute taught for an afternoon. It was one on one so not physically taxing. Also, no dystonia so far with it turned off. Going to wean off the Artane.

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