Dale's Brain Surgery

I am 38 years old and recently had brain surgery with the hopes of stopping or reducing the effects of the epilepsy i have had since at least 10 years of age (we didn't know that i had epilepsy until i was 21, it may have started as an infant due to a severe reaction to an immunization). The surgery was performed by Dr. Gary Mathern at UCLA Hospital on July 18th, 2002.

My personal page is http://www.hugger.net/brainsurgery/dales_surgery.htm

Pictures after Surgery :-)

You should know that after this surgery they say no shower / bath until a couple days after your staples are out. Your staples usually come out 10 to 14 days after surgery. In my case they left a bunch of blood in my hair after surgery. Finally one doctor told me i could wash my hair out with hydrogen peroxide. Wish we had known that when i left the hospital. :-)

Before Surgery

Video EEG
Connect you up to EEG for an extended time (up to several days). You stay at the hospital and they video tape you and observe to see your seizures. In my case they removed all medicine to ensure I had some seizures. This is not necessarily a stressful time. Unless hospitals stress you. For me it was several days of watching TV and eating ice cream. They should have arranged for the IRS to interrogate me --- that might have caused some stress. The wires were a pain hanging all over, but such is life. ;-)
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Angio-Wada Test    descr ...
They inject through your inner thigh something to shut down half-your brain. They do this so they can find out how much you depend on the side of the brain where they are going to do the surgery. Does this hurt??? Some say they never felt a thing, others say it really hurt. In my case the nurse said it was hard to get to my artery they wanted to inject into. So that was the only pain I had. It was very uncomfortable, it hurt, but others I've talked to said they never felt anything.

during the test they basically have you hold their fingers and move your feet so they can see if you lose some or all of your ability to do so. They talk with you and ask you to remember a few things so they can see if your ability to talk and remember things is affected. They said my grip got lighter as time went on... I'd like to see them hold very tight on to someone's fingers for 20 minutes. It gets tiring. :-)

Some people have had a few minutes where they can't talk, or temporary loss of strength. Neither of these necessarily keep you from having surgery... especially if you gain your strength back and begin talking.
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Day of Surgery
I was brought into a pre-op or prep room and was put under while there -- at least that's the last thing I remember was being in there. I think I didn't wake up till 9 hours later. I was awake for no portion of my surgery. My wife said surgery was 6 to eight hours plus some prep time and closure time (put a titanium plate to hold in a piece of bone they cut out).
Not long after I woke up I threw up. Not the nicest thing... but not unusual after many hours of anesthesia.
I think they had a eight hours of surgery... don't know why... but it took them a while.
After some time in the post-op they moved me to Intensive Care.
I felt like a vise was clamped tight on my head. And it only got worse for a day or two. Then it very slowly got better. I lived for vicodin (pain medicine). The swelling doesn't happen to everyone... but you should be prepared for it. :-( When I complained the nurses so kindly told me I "should just be thankful for being alive." I am thankful... for being alive... not for the clamp that I could feel was on my head (my wife assures me there was no physical clamp... just a swollen head... nothing new there).
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Hospital
It was 24 hours after surgery that my black eye developed. My wife assures me it came on its own and that she had nothing to do with it ;-).
While in ICU they said I could walk with a nurse helping me. I had to insist on doing it. I insisted on a regular basis as I believe in my case it helped me to recover (not everyone will this be the case for).
The Nurses were surprised at my ability to walk and my insistence on it. But I started walking on my first birthday and didn't want to stop quite yet. I ended out walking from the ICU to my regular room.
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Three Things to Go home
You had to do three things to go home from the hospital: Walk, Poop, & Eat. To poop you need to eat and it helps to walk. I walked carefully thinking about what I was doing. You can't at first just count on your body doing it naturally. I still have to be careful of low overhangs and things sticking out from the side. I don't seem to be aware of such things and tend to hit my head now and then.
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The Next Six Weeks
The first three weeks are the most difficult. If you have swelling like I did it will feel like a vise has been attached to your head and clamped down hard. I lived for vicodin (my pain medication) for the first two and a half weeks after surgery. I slept 16 hours a day the first 2 weeks (I would sleep catnaps for an hour or so throughout the day), each time I slept I was hoping and praying that when I woke up the vise would have been removed. Apparently not everyone gets this swelling and feeling of a clamp/vise on their heads. But it is a possibility. :-(.
The doctor insisted for 6 weeks I was to lift nothing over 5 pounds... tell that to your kids aged 2, 4, and 5. I moved just after surgery and my family will never let me forget that I did not lift anything to move myself (hey I weigh more than five pounds... I didn't think I should lift myself but no-one would carry me).
If you are having brain surgery I urge you to consider yourself out of commission for at least 3 weeks. You are not going to be in condition to do much for at least 3 weeks and it could be 6 weeks. Admittedly at six weeks I went to family-camp and did the climbing wall... but I'm somewhat brain-less. You should know better. :-)
When you go to the store make sure and get one of those electric carts!!! You are going to tire easily, and using the cart allows you to get out and about. Most grocery stores have them and so do many other stores. When i was feeling fine i would notice i still tired easily.
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Is this head going to stop hurting
I thought my head would never stop hurting. It did finally quit feeling like a vise was attached. But it took closer to five or six weeks.
Nerve Whacky-ness
Now that my head does not feel like a vise is attached to it i can feel things on the right side of my face. However, my nerves are still out of whack (a technical term). Touching my right side of my lip and i feel all across my cheek. touch my cheek and i feel it on my lips (as well as on my cheek). Touch my nose and feel it on my eyebrow. Scratch my forehead and feel it up on my head. All exactly on the right side of my head. My left side is perfectly normal (at least I think so).

Oh, and maybe the most disconcerting... when i drink something it often feels like the drink is on the outside of my cheek. Even more disconcerting is when i think it's just my nerves and then i find out there really is drink on the side of my face. :-)
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What's Next?
My seizures did not stop completely. However as compared to many an hour, i now have entire days where i don't notice a seizure. My seizures were mostly light even by many considered to just be an aura. However if your aura rarely stops it gets debilitating. Under stress i still have seizures. But for now i am enjoying having so few seizures as compared to before.

Under certain circumstances they do consider surgery again. At this time i'm not considering it... but down the road maybe.
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Should I Have Done It?
Just the first month of having no seizures at all would have made it worth it! But having a fraction of the seizures i was having before is definitely worth it.
Should You Do It?
As a non-doctor who knows nothing about you... I definitely suggest it. You don't use most of your brain anyway... It's a quick weight-loss program. And while the doctor is in there you can ask him to cut your jaw muscles like mine were and when you can't open your mouth wide during the recovery you just naturally don't eat as much. I lost over 20 pounds. It took several months for my jaw to recover. Seriously... ask your doctor how he's going in to your brain and what side effects there might be... like cut jaw muscles.
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Links to other Sites:

If you know of a web site referring to epilepsy surgery especially personal stories related to it I'd love to feature them here.

The Face of Epilepsy - This is a chronicled account of preparing for epilepsy surgery and all the fun stuff associated with it.

Faces of Epilepsy - Life with Epilepsy doesn't have to end with the diagnosis.

Epilepsy-Surgery.com - designed for healthcare providers, patients and their families.

Some general Brain Sites:

Whole Brain Atlas Want to know what different parts of the brain do?

Atlases of the Brain

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Brain Surgery --- What Fun