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mmdspouse

Seizure-like attacks after DBS

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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.

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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.

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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.

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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!

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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).

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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!

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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!

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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.

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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.

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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.

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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!

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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.

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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.

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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.

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Dear Dr. Okun,

I wanted to let the gentleman above (geiserjc) know how my husband is doing.  Nobody was able to explain the shaking but they said they were not seizures.  We finally turned off the stimulator for a long time, about 6 months, and the "seizures" subsided.  We have since turned it on on a low setting and been increasing it very slowly and so far they have not recurred.  The gentleman (or woman) inquiring did not say if he or she had surgery recently.  I have concluded that my husband's brain needed more time to heal and the stimulation was just too much too soon.  The leads could also not be optimally placed but I am not sure there is an optimal placement as no wire in your brain would be optimal. Even though I do not understand it, I do believe that stress may have something to do with it.  The surgery and the stimulator just seemed to magnify any stress impulse even when my husband did not really feel he was stressed.

 

This is not to say that my husband is doing great.  His speech has been severely affected and his balance has deteriorated but that is another topic.

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Hello mmdspouse,

 

Thank you so very much for your reply. I am apparently not alone in this. The seizure activity mimics your husband's and since it was turned on, my speech, balance and affect are all affected. My doctors are all baffled, which has me very frustrated and angry. I Amin ministry, and have lost my "preaching voice". I was also in radio, and that voice is gone too. I am afraid to leave the house for fear that I'll have an "episode" in public.

 

My surgery was in June, and it was turned on later in June. My wife and I would love to talk with you. Moderator... Can I give my phone number to you to pass on, without posting it public ally here? Thank you!

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Loss of voice or reduction in voice after DBS is very common as part of a side effect (not seizure).

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In our experience the diminished voice post-DBS can rarely be improved by programming.  The best bet it speech therapy and some people like the LOUD program.

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Dear Dr. Okun and geiserjc,

I understand geiserjc's frustration.  I also could not understand why my husband's doctors were baffled.  Surely, I thought, he is not the first one with such symptoms.  I asked both the surgeon and the neurologist to check with their colleagues but they still insisted they had not seen this before.  Is there not a central forum where doctors exchange results and side effects? We live in a major metropolitan area.

 

With respect to the speech, it is not just loss of volume.  My husband started slurring his speech soon after the stimulator was turned on and it got worse from there.  Even when the stimulator was not on, the speech, although slightly improved, never recovered.  At this point unfortunately, he cannot be understood. Is this a DBS side effect?  Is there a reason why this happened?

 

Again, the doctors say that this is not something they have seen.  I find this hard to believe because before my husband had Parkinson's,  I had met two people with Parkinson's who had severe speech problems.  I do not think they had DBS so is the speech deterioration a part of Parkinson's and does DBS make it worse or did DBS cause it?  I do not have the answer. Can you let me know what you believe based on your experience?

 

You can share my e-mail with geiserjc.

 

Thank you.

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I would direct you to the free NPF Book on DBS.  We recommend all patients read it before DBS as I warn all patients that walking, talking, and thinking can worsen just from the insertion of the DBS leads.  In some cases activation of the leads can also cause these symptoms.  http://www3.parkinson.org/site/DocServer/Guide_to_DBS_Stimulation_Therapy.pdf;jsessionid=DA440C94BE93CEC98D7824A2A546540C.app333a?docID=189

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Hello,

 

I met with my neurosurgeon yesterday and asked him for answers, that if he needed to admit me to evaluate, do it... And he did... I am in the hospital now and although they are still baffled, we will hopefully find something.

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Dr. Okun,.

 

I was just released from the hospital with a diagnosis for the seizures of Psychogenic Non-Epileptic Seizures (PNES).  They gave me the diagnosis (the "answer") and then handed me discharge instructions. 

 

What I cannot fathom is why these would happen only after having DBS implanted, and not before.  The surgeon said that he could "take it out easily" but because it handled the tremors that it was doing more good and he doesn't recommend that it be taken out - but I still have voice issues, balance issues, gait issues - all of which you addressed previously - that DBS doesn't handle.

 

I am at my wits end here - I don't know where to turn...

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It is good that you have an answer that the attacks are not DBS related and if the DBS helps for some symptoms it is usually worth keeping place.  One thing we have used successfully over the years is counseling with a psychologist or licensed clinical social worker as that can in many cases resolve the episodes.  Good luck.

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