Epilepsy Community

Hello Bob,

Thank You for joining us. :) You may find Epland a bit slow rite now. But, we sure can & do appreciate your input, at any time. :) Stick Around! :) And yes, I too, Hope the New Year will be good to All! :)

Love Candi

Hi Cindy: it's bob from daily support. You invited me here and here I am ready to help where ever I can

Hi Bob,
I figured it was You. :) Jump any, at anytime, to reply to whoever You want. Thanks Again!

Love Candi

How much was the surgery and does it work for everyone ?

I got bit buy a mosquito 16 years ago that had in insephalitis and It knocked me out and put me in a comma for about 6 weeks when i was 10 but ive almost grown out of it 100% now but I can still have them if i got extremely stressed out. I can play video games 24/7 or do what others do or even drive. I even know before I have an attack so i guess im kinda lucky to but I still want it out of me 100%. it also gave me some memory problems. I have short term memory.

the ones i had when i was a kid were the worst but i can control them now

I don't have any idea how much the surgery cost, the ins. covered all of it. Does it work for everyone, No. It is very close to working for everyone however not everyone can have it. It all depends where your seiz. are comming from in your brain. I have supported over 15 people who had this surgery and it worked for all 15.

whats the surgery called ?

chomper and all,

I had my right temporal lobe removed on June 1, 2010 and have been sz. free since! I fell off a horse in 2003, have been on multiple (if not all) medications and none worked. I also have short term memory problems, but the surgery worked and I recommend it for everyone! I can legally drive again and have been sz. free since the surgery! 2011 will be a great year!

I had my right temporal lobe removed. I too have some short term memory problems but that is it. I design robotic communications for a living and do all of the wireing and programming. I can do this without any problem. Chomper I really want you to remember this. Your seiz. have to come from a part of the brain they can operate on. If your are I am here to show people it can work. I talk to people from the cleveland clinic and 1 other support web site. The other thing I want you to know is I don't think it is an easy decision for anyone. Take your time and do your home work. I didn't have any choice. My next seiz probably would have killed me. My shortest grand mal was 47min. long.

did the surgery help the short term memory ? because ever since I have ad epilepsy I have had memory problems as well.

Hi Bob,
I had a brain tumor removed on the right side of my head. Right after I got out of the recovery room and was awake the Dr.'s told me that I'll never be able to work again. This was 22 years ago and to this day all my nuero tells me is that I suffer from seizure disorder due to scar tissue from the operation,nothing at all about EP. Now at first I was on pheno and dilantin, for grand mal seizures. Now I am on the generic Keppra and pheno which for the last 4 and half months have stopped me from the grand mal seizures. But now when I get a seizure(only have had 1 since being on this new med) I am completely alert sitting down and have what my wife says are stroke looking like seizure with slurred speech,one side of mouth drooping and total numbness on left side for about 2 hours and then I'm good to go.

My Dr. and the nuero Dr. sent me for heart tests and to check for artery clogs and everything came back fine. He still insists the seizure activity is from the scar tissue. Can scar tissue be removed ? I also had to go through 6 weeks radiation treatment right after the surgery as the biopsy came back and was recommended that I go through with the rad. treatments. Any clues or ideas, I mean I use to work with heavy machinery b4 the operation and can't do that now, but I do keep myself very busy around the house and I mean from cement to siding to pushing tons of topsoil in the yard, right now no more ladders for me til I see how it goes with these seizures. The Nuero Doc. told me that he would have me seizure free in 1 year. He should have never said that to me as I told him I'd give him a run for his money.

John

John:
Yes Scar tissue can be removed, however it all depends on where it is. I don't know if this will help but at least ask the question. Did you tell the Dr that the meds have helped? Even though I had the operation I still take my seiz. meds. My body really works good when it comes to filtering out meds. I take 1000mg a day to maintain a average level. Have you had a blood level done on your meds. If the meds have helped, even if just a little, ask about upping the amount you take. You stated you keep busy around the house. Keep a log of everything you did before your next seiz. I can't take the heat or exert my self for a long period of time. The sack that fills the empty spot in my head, my kids tell me that is all of my head, swells up and puts pressure on what is left. I have had exactly what you have discribed to me but only when I exert my self. Don't accept just one dr. views get 1 or two other ones.

No it didn't help. I didn't have any short term memory problems until the surgery. I have done a lot of reasurch on short term memory problems and there are some great books out ther on how to deal with it. I just keep better notes and I use my calender on my cell phone a lot. Look into it. I can write a 3000 to 5000 word computer program and with my note pad I can walk away from it and when I come back I read my notes and never miss a beet.
Bob

in response to the short term memory issue. I had my rt. temporal lobe removed and still have short term memory problems. I teach fifth grade, have played the piano for over 25 years and still am able to do that. I also take a lot of notes, write lists, sticky notes, etc. I forget people's names, I can't memorize piano songs anymore, etc. But it is not like the movie "50 first dates" with Adam Sandler, which I was fearful of after having surgery. You take many notes, lists, adjust. Friends laugh and say "wait, I do that, and I'm just old" and I realize that I am no different than them.
I also agree with Bob, the doctors and research have to prove you are a surgicial candiate, and if you are, go for it! It is nothing to be afraid of........
Good luck,
Meredith

Bob,

I get my blood levels done every 6 months.Now the only blood they need is for the phenobarbital,There are no blood test level for the generic Keppra. Since I am taking the 3,000 mg. per day,I have read that this was the most that are required as a theurapudic(sp ) level. Heck I just found out not to long ago what my pheno levels are suppose to be and I have never had a problem with pheno levels at all.

And as far as my new Neuro Dr. he said anytime I get a seizure,to call him immediately instead of always running to the ER. So he does know that the Keppra is helping with at least stopping the Grand Mal seizures. Like I said it is just these stroke type seizures that are a concern. BTW what meds are you on,are you on Keppra?

My last visit to him was just b4 thanksgiving and I told him how tired I've been feeling and asked him about whether the pheno's are causing it. He told me if I wanted to try something else, I forget what kind he considered switching me to,but I said forget it. I'm sick of being a guinea pig with all these different meds. I go to see him again in May and if I am still feeling tired maybe I'll give it a try with whatever he suggests.

I use to be like you, when you stated about the heat, the only problem I have is that I love the hot summer months and sunny days. My old nuero Dr. who has since retired answered my question on heat related seizures and I always thought that because of the heat,I was sweating the meds out of my body and he told me that has no effect at all with the meds. Just b4 he retired,my last visit to him ,he was insisting on getting me off the dilantin and switching me over to something else. 20 yrs on Dilantin was long enough he said.

Next time I see the Neuro I'll ask him about the removal of the scar tissue to see if that can help me. If it was 'nt for these darn sleeping patterns that I get in,I'd be just fine. Thanks for the reply back.

John