About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (8)

Wed, Jul 1 12:59pm · Depth electrodes to monitor of seizures deep in the brain in Epilepsy & Seizures

Our son was on 5 anti seizure meds and still having 1 tonic clonic every 3 weeks or so.
Epileptologist recommenced this as next step to see if surgery an option

Fri, Jun 26 8:15am · Tonic upward stares occurring daily in Epilepsy & Seizures

Not really.
Is referring us to the local Epilepsy neurosurgeon for his review of the test results and recommended course of action going forward.

Fri, Jun 26 6:24am · Tonic upward stares occurring daily in Epilepsy & Seizures

Seizures are tonic clonic. Since fall seizures were on increase but following depth electrode procedure resection of some of brain scar tissue was done while addressing hemmorage and seizure frequency and intensity decreased.
I believe someone mentioned the PNES or I saw it in my online research.
Current thoughts are subclinical seizures remote possibility and more possibly oculogyric crisis.
Eyes do blink during episodes and gaze will shift periodically but always up. Additionally he is able to respond during most of the episode but slowly.
He has aphasia so responses are limited.
We have aligned ourselves with the Neurology group in Scarborough and have had our 1st in person meeting this week.
Continue to update Epileptologist in Boston at MGH however since she has treated our son since beginning of 2019.
Seizure meds are Depakote Keppra Vimpat Aptiom and Onfi.

Thank you for your interest in our Son’s situation.

Sun, Jun 21 7:20am · Tonic upward stares occurring daily in Epilepsy & Seizures

Mass general hospital in Boston (where the failed depth electrode test took place) and also Brigham and Women’s Hospital in Boston, which is supposed to have a good Neurosurgery program.
We will probably go there for a second opinion as next step in treatment.
Closely affiliated with Mass General but a separate entity

Sun, Jun 21 5:44am · Depth electrodes to monitor of seizures deep in the brain in Epilepsy & Seizures

Yes.
Our 37 year old son with medication resistant epilepsy had this done.
However the procedure did not go well and the surgeon conducting this caused a brain hemorrhage.

Sat, Jun 20 5:17pm · Tonic upward stares occurring daily in Epilepsy & Seizures

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.

Sat, Jun 20 2:33pm · Tonic upward stares occurring daily in Epilepsy & Seizures

Our 37 year old son has epilepsy.
In August of 2018 he had a seizure and fell, resulting in a TBI. Although he had regained his mobility and ability to do all daily care on his own he was still having seizures. In July of 2019 he had an unfortunate depth electrode study done at Mass General hospital resulting in a hemorrhage.
He has not regained mobility, now has 2 VPI shunts to manage his cerebral pressures and experiences daily periods of tonic upward stares lasting from an hour to longer than 14 hours.
No one at Mass General can explain what these are.
They resemble seizures except they do not show up on an EEG and cannot be broken with the usual rescue medications.
This has been going on for 11 months!
Has anyone else had a similar experience or familiarity with someone who has?