Hello everyone-
I'm on this site for my computer-illiterate dad who is on the waiting list for Invasive Video EEG Monitoring.

A LITTLE BACKGROUND:
My dad had a tire blow up in his face in 1979. It cause a lot of damage to the right front tempral lobe area, but it was repairable. Two to three years later he started having seizures because of the accident. He was put on several medications before finding that dilatin worked. Dilatin continued to work until about seven years ago when he started having seizures every so often again. Since then, he has been on many different meds and combos of meds. None have worked completely.
This summer the seizures increased and we started making many trips to the neurologist. He's now had an MRI, X-ray, CAT scan, PET scan, psychoneurological exams, EEG, and week-long Video EEG monitoring without meds. Now they think the best way to pinpoint the cause and find out whether removing it will cause any sort of handicap or not is to do *Invasive* video EEG monitoring.

WHAT WE KNOW
The purpose of this surgery is the same as regular video EEG monitoring, but this has more accurate results because it removes the interference of hair, brain fluid, scar tissue, the plate in his head, etc. The procedure requires them to make an 18" incision in his scalp, remove part of the skull, put electodes on the brain, close it up. Then they monitor him (with or without medication) until they get what they want. Afterwards, they open him back up and remove the electrodes. This procedure involves a 3-week in hospital stay and an 8 week recovery time afterwards. If they find the problem area and can remove it, they will do it (with his consent) when they go in to remove the electrodes. From what they say, risks are limited--bleeding and infection.

WHAT WE WANT TO KNOW
My father is single and lives alone. We need to know what he will/won't be able to do afterwards. His main concern is whether or not he will be up to overseeing his business afterwards. :rolleyes: My main concerns are if he will require supervision? Will he be able to cook/clean/take care of himself? Esentially, do I need to take a semester off of college to go take care of him?
If anyone has had this done or knows of someone that has, PLEASE give us and idea of what to expect. The scariest part is the unknown.
Thanks,
Dawn

Hi Dawn & welcome,

Our daughter recently had a removal surgery in June. In April, they needed to do a procedure called a burr hole VEEG. They were questioning activity they thought they saw on her regular VEEG in August of 2003. They needed to make sure, before the board made its final recommendation. The burr holes were diime sized, drilled in each temple and electrodes were slipped inbetween the layers of the brain. It is similar to what they would like to do with your dad.

The procedure they would like to have your dad do is called "mapping". They open a larger portion of the skull, lay a larger grid with electrodes on it over the brain, close up and monitor him in the hospital while he has seizures.

Have they said why they want to do it this way, right off the bat? Do they have an specific indication that they are able to help him? Are they saying the only way they can see if they can help is if they do this? Does his EEG show "all over" activity, or is it strictly held to one side or area of the brain? This is really important. If there is all over activity, it makes it more difficult to diagnose then.

We know of some surgery patients that had the "map" style done and had immediate surgery. It was about a 3-4 week stay in the hospital. First to have the map put in, then to monitor, then to the actual brain removal surgery (called a "resection"), then to recovery before being released form the hospital. The longer the amount of time for mapping and surgery, the longer he may need to stay for recovery. They need to keep an eye on infection and bleeding. They monitor temperature around the clock for days on end. And BIG gun antibiotics are given at daily intervals to prevent infection and morhpine for any headaches (which also causes constipation, bummer). They are started immediatlely after surgery and go for as many days as they feel are needed. Also, with the mapping, you are not allowed out of bed. He will need to use a bed pan. That was rough for Katie, being a girl and all.

If they don't do any resection surgery, he will be out and home. He cannot lift anything over 10 pounds (about as much as a gallon of milk), will possibly have headaches (Katie had a scrip for big med), have follow up visits and will be tired for the first few days. No driving for a certain time, don't know what it will be for his situation. After the burr hole surgery, Katie missed 3 weeks of school, to give you an idea. And no gym for the rest of the school year.

If they do do a resection, then the restrictions are even more so. That will be given on an individual basis, depending on how surgery went. Katie had the burr hole surgery in April and her actual resection in June, when school was out. That is the way we chose to do it. Her surgery went very well. She lost 4 ounces of blood and didn't need any of the blood that was donated for her. She was out of the hospital in 74 hours, had followup visits to the neurosurgeon weekly for a month, then went to twice a month. Now every 3-6 months. She did have headaches on and off for about a month. They came less and less as time went on. This is because spinal fluid needs to fill the space where brain was removed. The site is still tender. The staples they use are a little gruesome looking, but they help to prevent infection. Rather than the old "sewing" method.

If you have any other questions, I will check back later...it is a tough decision to make. It took a year of testing before all was ok'd for Katie. She has been seizure free, since her surgery. She takes 2 meds and as of last Wed. was given the ok to come off of one of them. That is a big deal.

Take care,
Vicki

WOW Vicki! You did great! I can't add much to what Vicki has said except to say that I live alone too. After my surgery, I went back to my home alone and was fine. I didn't need anything other than to take care of the site and follow the instructions given to me on discharge. He will have the phone numbers of his doc and instructions too, so checking on him is great, but he may be fine on his own. That is something you can decide together. Ask him what he wants. That is most important. My cousin came to check on me once, but she did it to satisfy her curiosity and to feel lilke she had helped in some way. I really didn't need anything, but appreciated the concern. Each case is different, but this surgery can be an adjustment for family members as well as the patient. Good luck, and thank you for researching for your Dad. That is so sweet. My cousin did it for me when I was going through it as I didn't have a computer then. Phoebe

Vikki & Phoebe-
Thanks so much for your responses! To answer your questions Vikki, they do feel they need to do this in order to decide whether or not resection is a possibility. Because of the trauma he sustained in '79, there is a lot of scar tissue that makes it harder for regular VEEGs to pinpoint the problem. They have limited it down to the front temporal lobe, though. That gives them something to go off of. :) They feel that he is most likely a surgery candidate because they are *hoping* that the cause is scar tissue that's where it's not supposed to be. So, we'll see. Thanks for sharing your stories! It's helped a lot. I'll keep you posted as to what happens. Thanks again!
Dawn

All my best to you and your dad, please do keep us posted...looking forward to more good news...here's to hope!!! :angel:

Vicki