Connect
← Return to Young adult daughter opposed to brain surgery
Discussion
Young adult daughter opposed to brain surgery
Brain & Nervous System | Last Active: 1 day ago | Replies (8)Comment receiving replies
@adoptivemother
I’ve had seizures for nearly 60 years and refused surgery several times. Although a minor at the time thankfully my parents never forced me to have the surgery. As bad as my seizures were I never regretted my decision.
I had seizures daily or near-daily and sometimes many times a day and was in many induced comas. After 45 years my seizures stopped for the most part. But if I had a encephalocele I would want surgery to corrected the condition because of likely serious complications. Even some serious complications are treatable today. Was her condition congenital or did she develop it after birth?
Take care,
Jake
Replies to "@adoptivemother I’ve had seizures for nearly 60 years and refused surgery several times. Although a minor..."
Connect
Thank you for your insight. It is good for me to hear from someone who declined surgery and doesn't regret it. My issue is that she is suicidal living with epilepsy and every time she plans to take a higher level job, start a relationship, begin driving, or apply to school, she has a major seizure or cluster of them that interferes.
So the encephalocele, which is like a brain hernia, supposedly was there since birth. The hole in her skull was for sure congenital and they believe the brain matter leaking out is as well because of the shape of it and the fact that it doesn't appear to have grown. The epilepsy didn't become noticeable until she was 19/20 years old. It is hard to say when it began because her initial seizures were absence only and she was having trouble with remembering things and paying attention in high school so I wonder how long it was going on.
We have a highly rated hospital system nearby where she went to college (and where we used to live) that insisted her seizures were not coming from the encephalocele. When I began to question that, I did extensive research on doctors across the country and I did actually read every bio of every neurologist at Mayo but nothing mentioned encephaloceles and she would not release her records to be reviewed. I then began researching case studies and tied several together with the same two doctors at Mayo in Rochester only to find out they did a full study on the connection of epilepsy and encephaloceles! And they cured many people.
There is a video linked to Dr. Britton and Dr. Van Gompel's bios on the Mayo website featuring a young man her age named Jacob who had her exact diagnosis and presentation as far as I can tell. His seizures stopped after surgery and he went back to living his full life.
It is hard to be responsible for caring for someone who doesn't want treatment because caring for her and worrying about her consume my life and impact my marriage, ability to travel, work, finances, and mental health. She is worth ALL of that but it is hard to accept it might be unnecessary. She would be completely independent if it weren't for the seizures.
Heather