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Seizure-like attacks after DBS


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#1 mmdspouse

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Posted 13 August 2011 - 05:11 PM

My husband (age 54) had bilateral DBS with the electrodes implanted July 7, 2011 and the stimulator implated July 22. The stimulator was turned on July 27. His tremors were gone so he went off medications but soon his walking deteriorated and his speech slurred. He also seemed stunned. The next week the stimulator setting were changed and turned lower. His speech improved and so did his walking. However, several days after, he started to develop sudden and severe tremors that look like seizures, except he does not loose consciousness. They lasted from one to several minutes. We called the doctor who advised to start Sinamet. It did not help. After a very strong episode one at night, we turned off the stimulator and resumed full meds (Sinamet and Stalevo). He was better. The stimulator was turned on again a few days later with new settings. The first day went great and then the attacks started again. We turned the stimulator off again as they were very frightening and seemed to be caused by the stimulator. We went to see the doctor with the stimulator still off and he had an attack right in the office. The doctor tried to stop it by starting the stimulator but it did not change the attack or improve it at all. The stimulator is now off (to calm things down and start over) but his attacks have continued and are getting more frequent, 4-5 times a day and also at night. Yesterday, the doctor prescribed 0.5 mg of clonazepam and so far (half a day) seems to keep the seizures at bay. Have you ever seen this? What is this and why might it be happening? Can something other then the drugs be done? Should we turn the stimulator back on? The doctor had not seen this before.
Thank you all for any advice.

#2 Dr. Okun

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Posted 14 August 2011 - 08:47 AM

I have seen funny attacks that are stimulation induced from lead misplacement issues. I would advocate that a few things be done to sort this out:

1- A MRI and careful measurement of the leads
2- checking thresholds for benefit and side effects at each contact to be sure the right risk benefit ratio is achieved.

You are very early post-DBS so there are also other issues that can impact the outcome including small seizures and bleeding among others.

Keep us posted.
Michael S. Okun, M.D.
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 mmdspouse

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Posted 14 August 2011 - 03:05 PM

I have seen funny attacks that are stimulation induced from lead misplacement issues. I would advocate that a few things be done to sort this out:

1- A MRI and careful measurement of the leads
2- checking thresholds for benefit and side effects at each contact to be sure the right risk benefit ratio is achieved.

You are very early post-DBS so there are also other issues that can impact the outcome including small seizures and bleeding among others.

Keep us posted.



#4 mmdspouse

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Posted 14 August 2011 - 03:15 PM

Dear Dr. Okun,
Thank you very much for your reply. I will discuss with the doctor this week. I forgot to say in my original post that a CT scan was taken after the office visit of the attack and the doctor told us the result was normal. Would the MRI be different? Also, since adding the 0.5 mg of clonazepam twice a day, he has had one small episode yesterday evening and another this morning. Is the next step to increase the dosage? Any other suggestions?
I will try to get an appointment earlier this week than Wednesday.
Thank you so much for your help!

#5 Dr. Okun

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Posted 16 August 2011 - 01:33 PM

MRI shows more detail than CT but must be done more carefully for safety.

Treatment and diagnosis of seizures is tricky and should be done in person. In general clonzepam and other benzos are not first line therapy unless in a continuous seizure (status epilepticus).
Michael S. Okun, M.D.
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

#6 mmdspouse

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Posted 20 August 2011 - 04:40 PM

Dear Dr. Okun,
An MRI and Carotid test was done but no results yet (the technician of the carotid test said it was fine). We have another appointment this coming Wednesday. The stimulator is still off and the attacks are continuing. I looked at your initial response again. If there was a lead misplacement but the stimulator is off, what would be the cause for the attacks. In other words, could misplaced leads cause these attacks even if there is no stimulation?
What if the MRI shows nothing? What is the next step? This is becoming intolerable for my husband. The neurologist is consulting with the surgeon but if there is no clear explanation, what would you advise we do next?

Thank you for your help!

#7 Dr. Okun

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Posted 21 August 2011 - 08:37 AM

If the stimulator is now off, you will need to pursue whether these are true seizures (sometimes inpatient epilepsy monitoring can answer this question). Sometimes there is a bleed in the brain (deep or shallow) and that may be causing the issues. Finally, there could be worsening of pre-existing neuropsychological or psychiatric issues (that is why we usually screen patients with psychologists and psychiatrists). Sometimes a hospital admission by an experienced neurology-neurosurgery team can sort this out.

There can be "implantation effects" of the lead-- blood, swelling, etc.

Hope you sort this out soon!
Michael S. Okun, M.D.
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

#8 mmdspouse

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Posted 12 September 2011 - 03:35 AM

Dear Dr. Okun,
All tests, including a sleep-deprived EEG have come back negative/normal so apparently these are not seizures. The MRI also showed no bleeding or swelling and the neurologist insists the leads are in the right place. However, the attacks continue whether he is relaxed (before sleeping, sitting in a chair or car) or somewhat stressed - discussions etc. I have videos of them which I have shared with the neurologist.

My questions are:

1) Please explain what you mean by "neuropsychological or psychiatric issues". My husband underwent testing and he is generally quite stable. How do they manifest themselves? How could these cause these attacks?

2) What is meant by a DBS side effect of "tonic muscle contractions". Can these by the cause? If these are not seizures, they could be severe muscle spasms. His head, for example, moves in a disjointed, nodding way when it happens.

The neurologist has seen these attacks in her office, twice and says she has never seen these before nor have any of her collegues. I do not understand how there can be thousands of these surgeries and this side effect not documented/explained/experienced before.

At this point we need to seek a second opinion. Please advise.

#9 Dr. Okun

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Posted 13 September 2011 - 02:26 PM

A lot of times when a neuropsychological or psychiatric cause for "spasms" is suspected doctors believe a cognitive/mood issue is converted into a physical issue. This is usually addressed through counseling psychology and/or medications and the use of an interdisciplinary team.

As far as the tonic contractions-- if they are caused by the DBS current spreading into the motor system they usually resolve when the devices are turned off.

Some people actually do a test where they turn the devices off for a day with the doc's permission to sort out whether stimulation related.

This sounds complicated and I think your idea of a second opinion may be a good one.

The videos should also help in the second opinion.
Michael S. Okun, M.D.
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

#10 mmdspouse

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Posted 18 January 2012 - 09:10 PM

A lot of times when a neuropsychological or psychiatric cause for "spasms" is suspected doctors believe a cognitive/mood issue is converted into a physical issue. This is usually addressed through counseling psychology and/or medications and the use of an interdisciplinary team.

As far as the tonic contractions-- if they are caused by the DBS current spreading into the motor system they usually resolve when the devices are turned off.

Some people actually do a test where they turn the devices off for a day with the doc's permission to sort out whether stimulation related.

This sounds complicated and I think your idea of a second opinion may be a good one.

The videos should also help in the second opinion.



#11 mmdspouse

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Posted 18 January 2012 - 09:36 PM

Dear Dr. Okun,
It has been months and my husband finally got a second opinion. The second opinion doctor (to us by phone today and was also sent by email to first doctor) questions the placement of the left lead and also noted some swelling and bleeding on the post-op MRI. This is shocking to us because the prior team had insisted that there was no sign of swelling or bleeding and no issue with the lead placement. What do we do now? The second opinion doctor says to get a current MRI which I am sure they will order. We have not had a chance to speak to the first team, and, frankly, do not know what to say. What is the protocol now? What do you recommend?

The thought of another surgery makes us ill. My husband had to have foot surgery in September and his recovery was very slow. The stimulator was turned off for the surgery. He had shaking attacks right after coming out of the anesthesia and when the stimulator was turned back on the attacks got worse so it was turned off. It has been off for 4 months now. My husband is back on meds and we are trying to get him as good as he was before the DBS surgery. He is doing ok. His speech is slurred but the tremors are actually improved and are managed with medication. He still gets the shaking (myoclonic, the first surgeon called them) episodes but now mostly when his meds are past due or he gets really stressed.

What would you recommend now?

Thank you for your help!

#12 Dr. Okun

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Posted 20 January 2012 - 08:41 AM

I am glad you are getting some answers and it seems you are on the right track.

Usually the next step is to take him to an experienced center for workup of the leads. They can attempt reprogramming, changing meds, adding therapy and as a last resort offer surgery if the risk benefit ratio is in his favor.

Hope that helps.
Michael S. Okun, M.D.
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 geiserjc

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Posted 19 October 2014 - 05:13 PM

I stumbled across this over the weekend, and it's exactly what I am experiencing.  Last Saturday (a week ago), I started experiencing something like seizures, where my head shakes and my right side freezes up.  I experienced 2 overnight, one the next morning, and one during church that morning, I went to the local ER where I experienced 2 more...

 

They did a CT Scan and an EEG and transferred me to the hospital that did my DBS Implantation, stating that there was something wrong with the left lead and that it may need to be replaced.  Needless to say, the hospital to which I was transferred, said that there was nothing wrong and that it's probably "stress" - which I find very hard to believe.

 

I wanted to know, if it's possible, what the outcome was for the gentlemen in this post... I am starting to look at second opinions, and I have nowhere to turn in terms of what this could be..

 

Thanks for any help you can provide.



#14 Dr. Okun

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Posted 20 October 2014 - 06:04 AM

It definitely could be something important and complex partial seizures can be set off by previous brain surgery.  Best to look into this possibility with an epileptologist.


Michael S. Okun, M.D.
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

#15 geiserjc

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Posted 20 October 2014 - 07:32 AM

Thank you Dr. Okun - I will look into this.




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