Grandpa's Beautiful Granddaughter needs help

Re: Grandpa's Beautiful Granddaughter needs help

Submitted by PressOn4aCure on Sun, 2013-09-01 - 10:58

Hi. I am brand new to this site and forum and this is my first post. If you are not getting the answers you need for your granddaughter or her parents are not, please firmly press for more information. My seventeen year old son just had brain surgery to hopefully cure his epilepsy on July 31st and two weeks after surgery, had his first NORMAL EEG!!! Surgery was never suggested as an option for him because it is usually reserved for patients with intractable seizures (those that don't respond to medication) and his were relatively well-controlled. But "well-controlled" became unacceptable to me as he approached high school graduation and would soon be going off on his own (he had grand mal seizures only at night during sleep and I was very concerned about SUDEP) so I began to research epilepsy surgery and found out that the success rates for the right patients is very high (anywhere from sixty to ninety-plus percent!) I wanted this so badly for him so then I began to research what makes a patient a good candidate for this surgery and found two things that must be true: one, the seizure focus (the place in the brain where the seizures originate) must be clearly identifiable and two, the area in question must be removable without causing harm to "eloquent" areas of the brain (that is, those areas that we just have to have or areas that would cause worse harm to the patient than having seizures). I approached our neurologist about surgery and he believed that my concerns for my son were legitimate and that we should find out if Justin was a good candidate for surgery. It turns out he was but our neurologist faced a lot of opposition from many other people on the epilepsy team (all of them have to agree that a child should have surgery or the surgery does not happen) because Justin didn't have frequent seizures. Some of the doctors on the team were adamant that the "first, do no harm" rule of medicine be adhered to in our case and said we were basically foolish for considering the risk of surgery when Justin's seizures were relatively well-controlled. One doctor told me "Tough luck. You and your child are not the only people who have had to deal with this type of thing and life sucks sometimes so too bad" in so many words. But our neurologist took an extra week to do his own research on the type of surgery my son would need before presenting Justin's case to the entire team. He wanted to have all of his ducks in a row, so to speak, so that he could make the other team members see that not only was Justin a good surgical candidate but that he deserved a chance at a normal life, one free of seizures and the high doses of medications he was on and their associated side-effects. Justin was considering careers in both the military and law enforcement and we knew that the military career was completely out of the question (one must be seizure free for five years and off all medications to be eligible to join the military) and we could envision Justin sailing through the interview process for law enforcement jobs in a few years when he finishes college and then after getting conditional job offers, ultimately being turned down for one job after another once the physical and health history were done (what were the chances that a law enforcement agency could risk having an epileptic in their force even if his seizures were only during sleep? We didn't think any agency could risk that.) Our neurologist really went to bat for us and won over every member of the epilepsy team! He is forever one of my heroes because he was willing to think outside the box for us and was willing to stand against great opposition to make surgery happen for my son. So Justin had surgery on July 31st and returned to school to begin his senior year of high school twenty days later. Eight days after surgery, you could not even tell he had had surgery at all and his recovery from surgery has been astonishing! The surgery took about four hours and his incision went from about ear-level on the right side of his head to halfway to ear-level on the left side (and all the way across the top of his head). He has titanium plates and screws holding his skull together while it heals but all of that is permanent. Our neurosurgeon, also one of my heroes, does not shave a child's hair before surgery (shaving actually causes nicks in the skin that leave a child more open to bacterial infections) so Justin's incision is completely invisible (and was almost invisible from the start even though he had dozens of dissolvable stitches all across the top of his head just behind his forehead hairline). Justin had a completely normal EEG two weeks after surgery...no epileptic activity whatsoever...and we are just beside ourselves with joy for the incredible outcome! But I must tell you that I pushed for what I believed in for my child and when I met resistance, I kept going. I did my research so I was educated and knew what I was talking about and made our neurologist see that even though Justin's seizures were relatively well-controlled, having epilepsy still affected his life and possibly his future in many negative ways. You need to find out for sure if the seizure focus has been identified in your daughter and if so, if it can be removed without doing more harm to her. If it is removable, you may have to fight for what your feel is right for her. I am going on a mission to have the protocol for epilepsy surgery changed because I believe many people are missing out on a normal life and good seizure control should not be the only thing considered when deciding if the surgery is possible for a patient. Other factors such as quality of life, medication side-effects, brain damage from just having seizures over time, the cumulative risk of simply having epilepsy (50,000 people a year die of epilepsy related complications like accidents and SUDEP!). When the cumulative risks of living with epilepsy were laid side by side with the small risks associated with surgery for Justin, it was a no-brainer that he should absolutely have the surgery. Every case is different so there is no one standard or answer that applies to everyone but if a patient wants to be seizure-free, is a good candidate for the surgery, and is willing to risk surgery, I believe they should have that choice. Press on 4 a cure for your granddaughter and find out if she is a good surgery candidate. If your are not satisfied with the answers you are getting from her present neurologist, do some research and find a different doctor. I have read that the Cleveland Clinic is the top hospital in the country for pediatric epilepsy surgery so you may want to take her there. Before you do that though, have her records sent to the epilepsy team there to evaluate her case and see if she might be a good candidate for surgery. It isn't always necessary to go there though. Our neurologist and neurosurgeon are just an hour away from our home and they are top-notch! They are both heroes to me! Please contact me personally at wolfcopwife14@gmail.com if you would like more information about our hospital and our doctors. My best to you!

Re: Grandpa's Beautiful Granddaughter needs help

Submitted by Frank Lee on Sun, 2013-09-01 - 12:10

Hello Grandpa

I'm hoping I can give suggestions but not feel impersonable or noncompassionate. (Not sure if those are real words).

An uncontrollable seizure condition would often be several seizures in a day or very severe seizures...long and very exhausting. Having one seizure a month may be a reason for a doctor to hold off on surgery. Maybe let us know what happens during the generalized seizure and for how long.

Taking several medications at high doses would be another factor to consider. How many different medications, at what dose, and with what side effects?

What is the chance that her situation will improve, stay the same, or worsen after surgery? As the brain continues to develop, would she need further surgery?

Regarding the Mayo Clinic, you should probably inquire on this site, or anywhere else, about the possible benefits. It is not inexpensive, and often not covered by insurance. Sometimes a patient can spend a week going through many tests, and still be told that it will be best to remain on certain medications.  

Good luck and keep us informed.