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Karen I was 46 when I was diagnosed but when the cp seizures actually started ?? I guess I was 45 - maybe 44.

My first surgery was Feb 2006 when I was 62. I turned 64 in July.... whew. I'm almost always the oldest posting in a forum - lol.
AND I haven't had a seizure - not a one - since my last surgery - May 2007.
 
Long answer -- lol -- brace yourself or just ignore me.
Sometime in 2004 around there I noticed a definite difference in my cp seizures and ME. I complained to my neuro and my husband. Both said there was no difference...I was trying to get attention. I kept complaining enough that July 28, 2005 (big day I'll never forget) my neuro sent me to St Louis for a MRI just to prove to me that nothing was wrong --

Oh - I talk too much. yadda yaddda That MRI showed a tumor so neuro had the films forwarded to Barnes Jewish Hospital and phoned me to say I would have surgery within a couple of days.
The testing didn't even start for a couple of weeks and the first surgery was Feb. 14, 2006.
I had a grade 2 oligodendrooglioma tumor that had been missed on the MRIs taken when my seizures started in 1990 (I did manage - thank God -to locate those very old films) That tumor is what started seizures in my brain.

After the first surgery Feb, 2006, to remove the tumor I did not have seizures again until May 2007. I did chose to have the most basic surgery possible. When the seizures started again - RATS - I chose more surgery ..... a bit more brain tissue - left temporal lobe -- and my left hippocampus were removed. My memory was seriously damaged and I'm having a difficult time regaining it but there are personal reasons behind that.

I am very willing to answer any more questions. I am a big fan of the surgery. I haven't had a seizure since May 2007 and IMHO a university hospital is a marvelous place.
 
Nancy said:
Long answer -- lol -- brace yourself or just ignore me.
Click to expand...

Never IGNORE Nancy! She's interesting and
has a lot of stories and experiences!

TRUST US on this one!

:tup:


Nancy said:
Oh - I talk too much.
Click to expand...

Not true!

Should I send Nancy to the "bad corner"
with a box of Godiva Chocolates?

:ponder:

(Oh wait, if I did that, then all the girls
will drum up something just to get
Godiva Chocolates - never mind -scratch
that plan ...)
 
Nancy,

I too am impressed with your story! What a journey you've taken. I'm so glad to hear that you're doing well now and you certainly are an encouragement to all the rest of us -- especially the newbies like me!

Blessings,
Roxie
 
And Nancy, it is so good to share with each other. Got any memory secrets?Like how to help when you can't remember something?
 
LOL. I had strokes to And this guy was giving me ideas on collecting your thoughts. And how it takes time after a traumatic brain injury. How to calm your self. When I get worked up I can never find anything. I just thought you might have more to add.lol
 
Not if I ate something before taking it....but then, I've been told I've got the stomach of a goat.....
 
Kansas - I have been so blessed there .... My stomach seems to have a cast iron lining and I can eat or "take" anything, so I can't offer one word of ......rats ....... I can't offer one word.

See? I've lost that word. I don't want "support". I don't want "encouragement".
This is the most miserable thing of having no memory ..... having no memory for speech.

And I'm willing to bet no one has the faintest idea of what I'm trying to say. rats rats rats
 
Nancy,

I had a left temporal lobectomy for seizures (never had any tumors) and was ready for a 2nd surgery because the seizures came back worse for me after the surgery, but then the neurosurgeon told me that since I had a damaged hippocampus deep in the left temporal lobe, he couldn't go back in to remove it. Otherwise I would end up like an advanced Alzheimer patient. But of course, that was back in the 90's, so I know the surgery procedure has improved since then. That is why I finally had the VNS, nothing else worked for me as far as for seizures. I still see an epileptologist at a university hospital. And, I, too suffer from aphasia and have difficulty finding words to describe things or names, places, etc., and sometimes don't remember doing things that my family tells me I had done...hmm....:ponder:

Let's see now, who was I talking too.............

Cindy
 
Kansas - please forgive me for interrupting your thread.

Cindy -- Isn't it almost "routine" now that the hippocampus is removed during TLE surgery? (or is that something I though I read somewhere?)
I thought (lol) that part of epilepsy could easily be damage to the hippocampus.
No matter what - I miss mine.
I wonder when the right one will take over.
 
Nancy,
I had my lobectomy way back in 1990. I think it is "routine" now to remove the hippocampus, or most of it. I didn't want to go in for another surgery because of the risks of stroke, plus of what my dr. had told me back then. I knew of another patient my age who did have a major stroke during his 2nd surgery by the same dr.
Were you having just CPs?
 
I started having "spells" which woke me up shortly after going to sleep -- TERRIFYING -- of course husband said I was having nightma .........
See? I talk too much - lol
Yes - I had complex partials (but I didn't know what they were) awake and asleep for maybe 18 months. I went to a doctor one time and he told me I needed more rest.

Then, Nov. 1, 1990, I had a tonic clonic shortly after going to sleep. EUREKA! I knew nothing about it and it it took me several hours to even believe him -- I felt 100% fine, no loss of bladder control, nothing ..... Well - it did take maybe 4 or 5 minutes before I knew who or where I was but I thought that was because I was awakened from being sound asleep.

Since then - 1990 - I've been sleeping alone so there is no real record of TCs while I'm asleep. I "think" maybe I've had 7 or 8. My neuro has listend to me talk and give details and he's said that we will never know -- maybe I was so sound asleep I 'wet the bed' instead of getting up ...... maybe I had a bad dream and bit my tongue...... maybe, maybe, maybe......we will never know. We do know that I've had cp's non-stop but never another tc while awake.
 
Don't worry too much about the hair loss. it differs in everyone. I've been taking valproate for 11 years and I didn't lose hair initially but when i went to a new environment i got a bald patch . Then the hair started growing back and now it's thin but i'm not bald. i used to have lots of hair and a haircut a week , now i'm down to a haircut every month. My mom's been on divalproex ( depakote) for the last 2 years. her hair has curled and thinned a bit but it hasn't fallen out in clumps. If you're among the lucky few who don't have to worry about the weight gain , good for you !. It's not gargantuan unless your dose is suddenly increased. I was stable on 500mg but i had a tonic clonic and my neuro tripled my dose. i gained 15kgs (~35lbs) in 2 months. It increases your appetite. Chill out a bit. stress is bad for you now. Consider taking time off or going on a vacation.
 
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