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DBS, Deep Brain Stimulation

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Unread 01-28-2013, 06:24 PM   #1
sunflower4u
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Default DBS, Deep Brain Stimulation

If you had it to do over again would you do it? In what way did it help you? I am in the process of going through the testing to see if I am a good candidate.

Thank You,
Sunflower

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Unread 01-28-2013, 06:51 PM   #2
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If you had it to do over again would you do it? In what way did it help you? I am in the process of going through the testing to see if I am a good candidate.

Thank You,
Sunflower

(If you do not wish to post on the forum please feel free to send me a pm.)
Sunflower,
Definitely a yes!
I'm 9 yrs post DBS and continue to benefit from it.
My neurostimulators went flat a few months ago and I had to wait a few days for them to be replaced and relied totally on Sinemet.
For those having DBS now that doesn't happen I don't think as there's a rechargeable type inserted initially instead.
Anyway I was shocked at how far PD had advanced without the benefit of stimulation.
I froze and couldn't so much as reach for a pill or rise from a chair are examples of how much progression has taken place without me realizing it.
You might benefit from contact with some DBS groups.
All the best wishes.
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Unread 01-29-2013, 01:04 AM   #3
vlhperry
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Default I had DBS surgery 8 years

I am on original batteries. I made the right decision. Now there is a DAT Scan which can diagnosis and track the progress of PD. This is a tool you could not use without removing the DBS. I would possibly reexamine my decision. I have no idea if they will replace the batteries is they go dead.

Making such a big one and personal. You could get as many answers as you could ask people have had DBS done, but no one could tell you what is right for you except you.

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Unread 01-29-2013, 03:35 PM   #4
Fowki
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Quote:
Originally Posted by sunflower4u View Post
If you had it to do over again would you do it? In what way did it help you? I am in the process of going through the testing to see if I am a good candidate.

Thank You,
Sunflower

(If you do not wish to post on the forum please feel free to send me a pm.)

I had DBS June 22, 2010, and it has been nothing short of a miracle. I am medication free, other than a small dose of Sinemet at bedtime because I have trouble with nighttime waking to roll over due to rigidity.

My tremors are pretty much gone. I still have balance and gait issues, but with physical therapy that is improving.

My biggest reservation about having the procedure was the prospect of being awake for part of it, but in comparison to the PD, it was a small hurdle and turned out to be much more tolerable than I had built it up in my mind to be.

I had the surgery early in the morning, and was discharged the next day...my aunt was in the hospital longer for her knee replacement than I was for brain surgery!! The family joke is that I had "drive-through" brain surgery.

Good luck!!
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dx'ed w/Young Onset Parkinson's Disease May 2006 at age 43. Symptomatic since 1997 or earlier. DBS June 22, 2010

dx'ed w/TN on right side 2007. GK x4, last GK 02/2013
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Unread 01-29-2013, 06:27 PM   #5
NorCalGal
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Quote:
Originally Posted by sunflower4u View Post
If you had it to do over again would you do it? In what way did it help you? I am in the process of going through the testing to see if I am a good candidate.

Thank You,
Sunflower

(If you do not wish to post on the forum please feel free to send me a pm.)
Sunflower, my doctor suggested I look into having the surgery last Oct.-Nov. The only other thing I would want to know besides did it help (I would assume most people would say "YES" esspecially those who have had the procedure done more recently) is how long did you have symptoms before being diagnosed and how long after drug treatment began was surgery performed? I had symptoms as far back as 2001 but wasn't dx'ed until June 2009. I wonder if after only 3 1/2 yrs, is my doctor rushing me? But then I have a bad day and wish I had had the surgery done already!

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Unread 02-19-2013, 12:39 PM   #6
JGreentree
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Blush DBS programming blues!

I've had PD since Dec 06, by 2010 Sinemet use caused me to suffer dyskenesias & when my Neurologist offered me the opportunity to become a "surgical candidate", I said "I'M IN!" Those of you who've had the surgery know that you have to go thru approx 6 mos worth of tests especially Psych testing before they put you on the table. My GPi bilateral surgeries took place Aug 2011, and recovery was about one solid month. I felt like a new man...dyskenesias gone! Walked the perimeter--approx 1.5mi every day. Drove myself everywhere I wanted to go... By July 2012 things began to unravel... Sinemet was becoming increasingly ineffective--I was freezing a lot more...My support group prescribed GYM TIME, so I did @ 100% effort. By Sept 2012, I was doing so poorly that I had to stop driving... Now I've seen 4 different programmers, an each time seems worse than the previous... (I'm currently back on a version designed by the FIRST programmer , albeit at higher voltages. My Neurologist keeps telling me to adopt an OPTIMISTIC outlook!
Would I opt for the surgery knowing what I do now (oh, by the way I no longer can speak intelligibly) I doubt it... I think I'd take my chance fighting the dyskenesias.
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Unread 02-20-2013, 12:32 AM   #7
ol'cs
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Default DBS isn't for everyone.

I know from my symptoms that I would be a poor candidate for DBS (rigid, dystonic , pd), plus I am too advanced now anyway. Yours is a personal decision to make, a very difficult one as you cannot predict the effectiveness of DBS, as it pertains to your particular pd manifestations. Some say it has made their life much better, others decline just as rapidly as they were going to anyway. It's a crap shoot at best. I wish you well, do not take this post as anything more than a simple comment.
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Unread 02-20-2013, 04:30 PM   #8
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Quote:
Originally Posted by JGreentree View Post
I've had PD since Dec 06, by 2010 Sinemet use caused me to suffer dyskenesias & when my Neurologist offered me the opportunity to become a "surgical candidate", I said "I'M IN!" Those of you who've had the surgery know that you have to go thru approx 6 mos worth of tests especially Psych testing before they put you on the table. My GPi bilateral surgeries took place Aug 2011, and recovery was about one solid month. I felt like a new man...dyskenesias gone! Walked the perimeter--approx 1.5mi every day. Drove myself everywhere I wanted to go... By July 2012 things began to unravel... Sinemet was becoming increasingly ineffective--I was freezing a lot more...My support group prescribed GYM TIME, so I did @ 100% effort. By Sept 2012, I was doing so poorly that I had to stop driving... Now I've seen 4 different programmers, an each time seems worse than the previous... (I'm currently back on a version designed by the FIRST programmer , albeit at higher voltages. My Neurologist keeps telling me to adopt an OPTIMISTIC outlook!
Would I opt for the surgery knowing what I do now (oh, by the way I no longer can speak intelligibly) I doubt it... I think I'd take my chance fighting the dyskenesias.
JGreentree,
Just some ideas for you in case you haven't already tried them.
First off turn your neurostimulators off and see if you're better or worse without them esp. your speech and whether or not you're dyskinesic still.
The fact that you found relief from DBS for nearly a year makes me think it might be a programming issue now so work through this till you get the right settings maybe with the one programmer be it a neurologist and or DBS nurse over a period of time?
Have you joined a DBS group? I'm a member of yahoo DBS and find they often give valuable advice.
Hope this helps. Best wishes.
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Unread 02-21-2013, 10:18 PM   #9
vlhperry
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Default II had two really bad days this week

I don't know why it took me so long to figure it out. I was shaking really bad, very,very rigid. It was such an effort to get up. Then remembered to check the batteries for my DBS. They were both off. Turned them back on and it made a world of difference.

But both my movement specialst and neurosurgeon insist I may not even have needed the surgery and will not replace my batteries. Called Medtronic; they were no help.

The Doctors don't believe patients anymore. Protest their conclusions and soon you will find yourself in a mental ward for being "extremly depressed."

Dianna
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Unread 02-21-2013, 11:51 PM   #10
olsen
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Default bad strategy

what? you were given the surgery, but now the surgeon and MDS think that was the wrong thing to do so they decided to allow the batteries to die? What kind of plan is that? Do you mind sharing where this procedure was done? Good Grief.
madelyn
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