Gabriel's Life » General

Seizures


(2 posts)

  1. Craig
    Member

    I am new here without a final diagnose of Hydrocephalus however the more I learn about it the more familiar it is. Any of this familiar?

    The following is my experience:
    Intractable Seizures
    Grayed-out vision, as in a shutter slowly closing
    Double vision
    A reduced field or loss of peripheral vision
    Punctate lesions in the cerebellar hemispheres
    A Subdural Hematoma after a LP, CRANIOTOMY TO REPAIR
    Hypertension, ON MEDS
    Cerebral Organic Aciduria
    BAV (bicuspid aortic valve) REPLACED
    PFO (patent foramen ovale) CLOSED
    Prolonged PTT
    Positive for LUPUS anticoagulant
    Diffusely fatty liver

    Is the CMAMMA a cause or symptom of Hydrocephalus? Or not related what so ever.

    If I do have Hydrocephalus even a slight over drainage of the ventricle from the May 2005 LP would result in a subdural hematoma. This would cause the ventricle to decrease in size to the point where the brain and its meninges pull away from the skull resulting in my subdural hematoma. I found out this is more common in adults than in children. This would explain why there wasn’t any external skull damage.

    This would explain the bouts of cyclical vomiting, cognitive & memory challenges with education, clumsiness with fine motor control growing up.

    Never crawled but while sitting would lean forward to shift weight, splayed legs out with hands grasping ankles, and pulled myself forward. As I was told “I thumped on my bottom like "Mister Frog” to move around. From this I eventually transitioned to walking.

    Never could learn how to swim, water ski, or snow skiing even after multiple years of lessons.

    It would explain why the seizures while under Dr. Gates’ 2003 observation and during my 2005 NIH visit did not show what is typically expected and thus judged to not be seizures.

    My seizures, recorded by MINCEP during the 12/2006 hospital video monitoring, were both in the left and right temporal lobes.

    Hydrocephalus would explain why we have not been able to find the right combination of seizure medications after 10 years of trying. Would also explain why the first and second implanted VNS (Vagus Nerve Stimulator) did not have any effect.

    Hydrocephalus, in some documented cases, has been responsive to B12 administration....

    Thank you,
    Craig

    Posted 1 month ago #
  2. cmh134
    Member

    It seems like you want a response but I only have a baby that has hydrocephalus... she has poor vision, if any, she had what they tell me were seizures at 2 days old but eeg had questionable results... her head enlarged very quickly and then after the shunt went the opposite way pretty quickly... I've learned some about the physical and mental repercussions and it does sound like you fit the description... she's not near to crawling and she is almost 11 mos old (8 mos corrected) wondering if you were premature... good luck getting a diagnosis and some answers.

    Posted 2 weeks ago #

RSS feed for this topic

Reply

You must log in to post.