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Michael Ehlers

Quickly taking a downward spiral

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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

 

 

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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!

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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

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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

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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.

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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

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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.

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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

 

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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).

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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?

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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.

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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

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Dr. Okun, today is 1/30.  The only change that my programmer made on 1/6 was a change on my right side of my head that was supposed to help with my speech. I was a stutterer since the 3rd grade.

 

Well now besides not going anywhere without a walker, now my speech is about the worse it has been my entire life.

I am currently having a Physical Therapist come to our home 4 times a week. We started our 3 week today.

 

Since I have a dropfoot and  my ankle now rolls, I will get a brace 2/10 that should prevent the rolling and help with my drop foot. I have big hopes fir this thing.

 

I had DBS 9/26 so it's  still not been 6 months yet.

 

At our 1/6  meeting, the programmer asked my wife what  she thought my best setting was so far. My wife said the original one, which had no name and was not bipolar. Since we started bipolar a while back, named group B, the original setting is now Group A.

 

So instead of going back to Group A, the programmer must have ignored my wife's few and just made the additional change to Group B hoping to improve my speech.

 

Question: Does every patient who has the capability of using the bipolar programming have to have it, or do some do better staying with the non bipolar, even though the bipolar offers so many different options. Realizing  that the programming part of DBS is the part I know the least about.

 

At least with the original setting I had dyskinesia and we were able to start reducing my Sinemet.

 

The programmer was self taught and I have only heard good things about her and supposedly doing this for 10+ years at the University of Cincinnati with the staff and my surgeon Dr. Mandybur all having experience and well documented praise.

 

I guess I expected more positive reaction from DBS than what I am getting. It is just frustrating and scary wondering why my PD symptoms are not a lot better if not worse in some areas. I'm and concerned how before DBS I was walking and 4 months later I went  to a cane and now to a walker without improvement in other areas like patient in this forum talk about.

 

1 more thing. In the past weeks I had to go from 3 mg Requip to 4 mg Requip at bedtime.

And because I'm not sleeping very long (2:30-4:00 AM) I had my Clonazepam changed from 1 to 1.5 mg. And since that didn't help just started on Trazadone .5

 

That's a lot of negativity in 4 months time.

 

Thank you for listening to me rant

 

Mike

 

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Mike.

 

Hang in there.  First, the bipolar settings often improve speech but worsen other issues (sounds like that happened with dyskinesia and motor symptoms).  We have some patients that are just plain worse with walking after DBS and that is unfortunate.  Since you are approaching 6 months one strategy is to get imaging of the lead location and check programming.  You could also ask them to cut off the DBS entirely and see if the walking improves.  Sometimes adding meds can be helpful for walking.  Hope you can work through it.  Trying the different programs whether A,B,C, or D could also be helpful.

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Dr. Okun,
 
I see the surgeon Feb 16.
Would he get the imaging of the lead location etc, or can the programmer do that?
Also that's one thing UC does differently I only get A (the very first program and B(the newest setting).
I do not get an A, B, C, D, option.
She says she's been doing this 14 yrs
It would be nice to get 4 options
 
This Friday I get my new brace that will prevent my ankle from rolling and help the drop foot.
I'm praying this really helps everything.
 
She printed off my settings last week.
Is it okay if I attach them for you to just look over?

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You can feel free to show us settings but it probably won't help as settings are relevant to specific patients and symptoms.

 

The post-op images for a DBS failure workup would need to be ordered by your neurologist or neurosurgeon now and can be compared to immediate post-op scans.  Two settings is ok, and sometimes we don't give four.

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I recommend to anyone with DBS concerned about outcome to pursue a troubleshooting workup.  Sometimes it is disease progression and nothing can be done; but other times there may be options.  I could not tell anything obvious from looking at your settings as settings can be very different across patients.

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