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fbutterw20 (@fbutterw20)

Tonic upward stares occurring daily

Epilepsy & Seizures | Last Active: Jun 26, 2020 | Replies (8)

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@fbutterw20

He is on 5 different seizure meds now.
The staring episodes have destroyed his life.
Once he falls into a stare(usually late morning or early afternoon the rest of his day is gone.
Falling asleep is the only way he seems to be able to break the stare.
We live in Maine so unfortunately an appointment at Mayo Clinic would be hard to arrange.
With 2 VP shunts I doubt he could safely fly.
The neurosurgeon who has performed all of his operations so far is recommending as a last effort an Endoscopic 3rd Venticulostomy but has said that it may not better his situation and could further complicate his cognitive and speech deficits.

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Replies to "He is on 5 different seizure meds now. The staring episodes have destroyed his life. Once..."

@fbutterw20
Good evening,
I’d like to welcome you to the Mayo Clinic Connect website I’m glad you reached out there’s a lot of good people here with a multitude of experiences.
I’m sorry to hear your son is going through this.
I’ve had epilepsy for 53 years, also Intractable and I know it can be difficult for everyone involved.
I was wondering if you would be willing to share some additional information.
1. What type of epilepsy did your son have prior to the hemorrhage? Since he fell I am assuming he has generalized Tonic-Clonic seizures. Regardless of the type how often was he having seizures prior to this procedure?
2. Which medications is he taking?
3. When he’s staring does he blink, are his eyes open wider than usual? Is he unaware of his surroundings during these episodes? Have you ever touched his eye during these episodes to see whether or not there is any reflex movement?
4. Has he ever had an abnormal EEG? Has he ever had any EEG during one of these episodes?
5. Has any doctor ever mentioned the possibility of Psychogenic Non-epileptic Seizures (PNES)?
6. Were they doing the intercranial EEG to locate the seizure focus in preparation for additional epilepsy surgery? Have any of his previous surgeries resulted in fewer seizures?

Although epilepsy surgery has helped many people I’m not an advocate for it and have turned it down on numerous occasions.
If the doctor who did the EEG procedure that caused the hemorrhage personally I wouldn’t trust him to do any surgery.
As Teresa mentioned (@hopeful33250) a second opinion is usually helpful but since the Epilepsy is intractable I would suggest an epilepsy center. There is a level 3 Epilepsy Center in Scarborough, Maine which I imagine has an Epileptologist on staff. Below is a link to locate all Comprehensive Epilepsy Centers. You can either in her Zip Code or a state or just choose all it’ll show all epilepsy centers in the United States but if I were you I would definitely have your son see an Epileptologist.
Wishing you all the very best of luck,
Jake