Young adult daughter opposed to brain surgery

@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

@adoptivemother

I had a Right Temporal Lobectomy back in 2000. I had refractory epilepsy, I was prescribed multiple medications with limited success. At the time I was married, with two young children, working part time but could not drive, nor do any of the other things you mentioned. My children unfortunately grew up seeing me have seizures. My decision was based on my limited quality of life, epilepsy limits you in all the ways that you mentioned, but mostly I was concerned that I wouldn’t see my children grow up.
It is a personal choice, I was given all the pros and cons relating to the operation and I still remember being scared. Mostly scared of my children’s future if something did happen.
I don’t regret the surgery! While not completely eradicating the seizures, I now drive and have a better lifestyle.
I did have some seizures after the surgery, I still take a lot of medication each day, but my last seizure has been some years ago.
This was also 25 years ago! There would have been many medical advances since then!

Good luck with everything

@adoptivemother
Hi, Heather.

Do you feel your daughter has fully researched her condition and understands the risk of not having the surgery?
https://my.clevelandclinic.org/health/diseases/encephalocele

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

Hello,

She has not researched it at all to my knowledge. I have provided links and videos but she doesn't even like me to talk to her about it. She says that epilepsy controls every aspect of her life so not talking about it is the only way to get some respite. I believe that she still has not accepted her diagnosis and that must happen before she engages in her treatment plan.

@adoptivemother
I’m so sorry for all you and your daughter/family are going through. Are you seeing a mental health specialist to help support you and your daughter during this time? Is your daughter open to an objective outsider who can talk to her about her condition and options and potential risks for not treating her condition?

What types of seizures does she have now? Does she become unconscious and has she ever fallen/been injured after having a seizure? It is really important to not be alone if you are epileptic and to be careful near stairs, in bathtubs or pools, or in positions that could cause asphyxiation after having a seizure.

Thank you. She has a counselor she has been working with for many years but she did not ask any questions at Mayo and rolled her eyes every time I did. They did not sit down and talk with her about pros/cons I think partially because they have not formally recommended surgery yet. That is what all of this testing for but it is pointing in that direction.

She has three types: absence, focal aware auras, and tonic/clonic grand mals. They are increasing in intensity as time goes on. During her auras in the past, she was able to communicate a bit but this last time she was completely unaware of anything around her. Inbetween the cluster, she was aware but could not speak. During the grand mals, her seizures typical and lasted 3-5 minutes. This last one was 40 minutes with two rescues and she was not conscious through much of it. She falls frequently and has broken bones, gotten a concussion, etc. She had a serious car accident when this all began. She does not care that her safety could be at risk because she hates her life and hopes one of these accidents "takes her out". 🙁 Recently, my visiting adult son asked her if she can go in hot tubs, implying the hot water might be a problem and we all laughed and then I said, "But she shouldn't go in alone." and she lost her mind and didn't speak to me for awhile. She asked how I expect her to live her life in fear of everyday circumstances. I had made the comment light heartedly and have never limited her usage of our hot tub.

Her personality has changed dramatically since the seizures began. It could be the Keppra, brain damage, severe depression, or a recently developed psychiatric disorder. It is impossible to know. But she was the easiest teenager and would never have spoken to me then the way she does now or been so oppositional.

@adoptivemother
You really have your hands full and a real challenge on your hands. I really hope your daughter will open herself up to learning about her condition and getting the help/treatment she needs to help her regain some quality of life.

I can empathize with you and your worry. I had a very close family friend die at 38 due to a seizure at the top of a flight of stairs and positional asphyxiation at the bottom of the stairs. He lived alone with his dog. 😢 His seizures/epilepsy started after having a bad sinus infection that went to his brain and then caused an abscess that caused a stroke when he was 37. He was paralyzed on one half of his body and had to learn how to walk again. Unfortunately, he did not want to take his medication because it made it hard to work/drive because it made him so sleepy and was hard to function. He once fell while shopping in a store and had a seizure and fell face first and smashed his nose which required surgery. He refused to move to AZ (he was in FL at the time) to live with his parents to ensure he was safe. A sad ending to a young life.

I really hope someone can get through to your daughter to empower her to take control of her life and epilepsy so it doesn’t control her.