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Quickly taking a downward spiral


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#1 mikeincincy

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Posted 25 October 2016 - 10:43 PM

Had DBS 9/26 and 10/3.

Started programming 10/14.

 

I am a worrier and have had several anxiety issues.

Last Sunday went out of town with my wife for a day.

DBS was on and feeling happy not to be around anyone that I knew, I had (I thought) a real good time.

My walking was a little worse but I didn't care I was having a good time with my wife.

Ate lunch and my stomach did not cramp up. But I did walk more than I had in weeks

Came home and watched a football game feeling unusually calm. It was like surreal.

I did eat a lot of fudge that night.

The next day I was afraid to leave our condo and have not been out since.

Either I walked too much or ?

 

I am having problems breathing (anxiety ?) and very concerned about my DBS  future.

 

 

 

Also  I am thin 5'11"   135 lbs

It feels like the neurotransmitter is so tight under my left chest muscle that it is effecting my breathing.

Is this possible?

 

 

Scared

Mike

 

 



#2 Dr. Okun

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Posted 26 October 2016 - 09:32 AM

Mike, you are so early post-DBS placement and also programming that I would not read too much into this...it can take 6 months to find the right programming and medication changes as well as therapy.  It is a long-term process.  Having said that panic as you describe is something I always tell patients to report to their doctor immediately (also report any suicidal ideation if that is present).  You can never be too careful.  Hope you feel better soon!


Michael S. Okun, M.D.

Author of Amazon Kindle, Paperback and Audio of 10 Breakthrough Therapies for Parkinson's Disease
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#3 mikeincincy

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Posted 26 October 2016 - 10:38 AM

Dr. Okun

 

I wanted to make sure that I slept good the night before that I took a Vicodin. I was still in a fog when I woke up. Could my "real good time" have been what they call euphoria from the vicodin?

I take maybe 2 pills a month, and probably won't again.

 

Also in these post I keep reading how DBS will make balance and gait worse. I feel like it already has and maybe this is anxiety too. Is it too soon to blame DBS on that

 

Thanks so much



#4 Jgard

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Posted 27 October 2016 - 06:12 AM

Dr. Okun,
Is it possible that DBS surgery can spur panic attacks? I had some anxiety issues before surgery, but it was after the last surgery (R.
Brain) that I began having actual panic attacks in my sleep. Are there any particular DBS settings that could help/aggravate the condition?

Concerned,
Jan

#5 mikeincincy

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Posted 29 October 2016 - 11:06 AM

Dr Okun,

 I was curious if DBS can make gait and balance worse would turning it off bring the legs back?

 

Just wondering, not planning.

 

 

Mike



#6 Dr. Okun

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Posted 08 November 2016 - 07:51 AM

Post-op all bets are off as post-op edema and other factors can lead to all sorts of issues.

 

Panic and gait issues can appear post-op and a close evaluation is needed to determine the cause.

 

Sometimes gait worsens after DBS and does not improve with meds or stimulation changes.

 

We recommend regular med and stim tuning visits for 6 months after the DBS surgery and we recommend not drawing any conclusions until after this optimization period.


Michael S. Okun, M.D.

Author of Amazon Kindle, Paperback and Audio of 10 Breakthrough Therapies for Parkinson's Disease
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#7 mikeincincy

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Posted 10 November 2016 - 06:13 AM

Dr.Okun,

Went to my second programming session Tuesday 11/8 and she put in my first group setting. She mentioned stimulation from the battery and 4 different kinds from  the implant wires. I must have missed a class, what was she talking about.

 

Thanks



#8 Dr. Okun

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Posted 15 November 2016 - 07:32 AM

If she is using a Medtronic device then there are four contacts on the DBS lead and they can be programmed into thousands of combinations.  Luckily we have some experience and can usually narrow the possibilities.

 

These new devices allow a programmer to give you 4 settings you can try at home and you can choose the best setting and report back on benefits and side effects from each setting.

 

So in summary the DBS lead in the brain has 4 contacts.  The device in your chest (battery) has 4 programs that can utilize any of the contacts.  I can see how this was confusing.


Michael S. Okun, M.D.

Author of Amazon Kindle, Paperback and Audio of 10 Breakthrough Therapies for Parkinson's Disease
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#9 mikeincincy

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Posted 31 December 2016 - 01:25 PM

Dr. Okun,

I haven't been to this forum for a awhile so I want to give an update and maybe get some promising news.

Had DBS implanted 9/26//16.

 

Had first bipolar group setting (B) that was not pleased with so went back to original subpolar A setting and things seemed okay but I know we are in this for the best results.

12/5 Took a fall and broke 2 ribs and punctured left lung. Didn't  really feel that bad. 12/6 Had appointment with programmer. Tried a different bipolar setting for group B. Being a good patient and trying to give this time.

12/15 fell out of bed, and landed hard on right side, decided to have UC ER take me in. No rib breaks just bruised. Only benefits I currently see from DBS are weight gain from 124 to 147 in 4+ months, and a reduction in Sinemet. Went from 3 25/100 pills every 2 hours to alternating 2 pills and 2 1/2 pills every 2 hours. So went from 27 Sinemet a day to 21 pills per day. 22% less.

 

Because of 2 falls I am currently using a walker because 1 more fall could be it. I am suppose to do physical therapy to increase balance but can't do much yet until ribs heal. So used walker Christmas Eve and day and did well but the next day 12/26 my right foot/ankle were very swollen and painful. 12/30 saw PCP and had 6 X-rays of foot/ankle. No break but painful foot and very unsteady joint.

Hoping for better things in 2017 and hoping ribs heal so I begin physical therapy.

 

I read were bad balance is usually related to weak calves, so my fingers are very crossed that I can get to do physical therapy, and get back to DBS as it should be. I just hope my balance isn't all due to DBS.

 

Mike

 



#10 Dr. Okun

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Posted 31 December 2016 - 02:35 PM

DBS particularly bilateral DBS can affect balance.  It is important you and your doc carefully assess lead locations and make sure that your balance is not being caused by stimulation of a region that would worsen symptoms.  Also, we like to turn the DBS off and see if balance improves (at least for a few supervised hours).


Michael S. Okun, M.D.

Author of Amazon Kindle, Paperback and Audio of 10 Breakthrough Therapies for Parkinson's Disease
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#11 mikeincincy

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Posted 01 January 2017 - 12:34 AM

Dr. Okun,

I think that is a very good idea.

But I have a few concerns.

My programmer is not a doctor, she is a CNP.

She is the only one who does this for our area, and I'm talking a pretty  good size city. And I asked where she learned, and she told me she taught herself.

I have only had 1 choice to choose from, either group A which is single polar or group B which is bi-polar. At first I had A, then we switched t a new B. I didn't like B so she had me go back to A until our next meeting  Then she went to a newer B which is what I am on currently. I can either do nothing or switch back to A. I don't have a choice of 4.

My next meeting is 1/6.

Is there something wrong with the method I am on?



#12 Dr. Okun

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Posted 01 January 2017 - 11:10 AM

There is nothing wrong with a nurse practitioner.  You should keep programming with her and do trial and error until you find a reasonable setting.  She can also show you to turn it off and that way you tell if balance is better is off.  Finally, if the device is hard to program imaging and a workup for suboptimally placed leads may be useful.


Michael S. Okun, M.D.

Author of Amazon Kindle, Paperback and Audio of 10 Breakthrough Therapies for Parkinson's Disease
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#13 mikeincincy

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Posted 01 January 2017 - 04:13 PM

Dr. Okun,

I don't have any issue changing groups or turning the unit off and on. I do all that myself. When I am at her office she has a larger screen that allows her to create or change groups and set maximum values to the settings. And of course it allows her to manipulate  all the settings.

I think this week I will turn off the unit and after a few hours see how things are, then after taking notes go back to group A and note what is better or worse. And then let her know what I found, when I see her Friday.

 

 

Thanks,

Mike



#14 Dr. Okun

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Posted 02 January 2017 - 07:44 AM

Great plan.


Michael S. Okun, M.D.

Author of Amazon Kindle, Paperback and Audio of 10 Breakthrough Therapies for Parkinson's Disease
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips





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