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What's Up Wednesday?
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Haylen_WebMD_Staff posted:
Greetings most excellent community!

It's been a while since we've had a roll call/check in - let's do it now!

I'm Haylen, a WebMD moderator lucky enough to be able to work with this community. I live in Southern California with my husband and two daughters, ages 7 and 4.

I'm a huge ice hockey fan and was thrilled that my Los Angeles Kings brought home the Stanley Cup for the 1st time ever! (Photo below taken at the championship parade downtown - that's not my husband - LOL)

I do not have epilepsy but I am constantly amazed at the strength, support and smarts shared by those in this community.

I'd love to hear from everyone - your name, the weather where you are, likes/dislikes, anything at all! Who is first???

Haylen



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hula_dancer73 responded:
hi haylen,

I am Nancy aka hula_dancer.

I live on O'ahu in HI. in Honolulu.

I enjpy wathcing the rainbow warriors. The we a ther here is in the 80s and 90s.

Ihavea puppy named Lulu. She was a stray that a friend gave to me about 5 onths ago after my otherdog died.

She is aterrier mix,

We lost a daughter at 13 due to a hard to treat form of JME I still have a 16 yr old who is almost 17. We havebeen married for 18 years.

where does the time go?!

Nancy
 
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dancer86442 responded:
I took a 'sabbatical', away from the comp, yesterday. Had a Great Time riding shotgun & visiting Thrift Stores. W/out being 'rushed'! So, today is my 'catch up' day. Hope you are having a good day! I Hope everyone else is, too. HUGS!

Love Candi
 
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saxofone1 responded:
Hi Haylen,

You have two beautiful girls!! I love that age.

My name is angie. I currently live in Vegas. I grew up in the Bay Area with the hippies, flower power, the Black Panthers, Angela Davis, Pattie Hearst, and earthquakes. I was too young to join in the pot parties at CAL and Golden Gate Park. I don't think I would joined anyway. Those days when kids played outside. Hopscotch, hide-and-seek, kick ball, jacks, etc. There weren't many weight issues then, were there? No cable tv!!!!

My first seizure was 3/27/75 when I was on spring break from the 8th grade.

I am a big football fan! Go RAIDERS!!! I also love baseball. Oakland A's and the San Fran Giants. Cal, Stanford, and USC. BOO on the Dodgers and UCLA.

The career side of me has been working with elementary school kids. I love them. They have been my inspiration since the 80s.

I had brain surgery in April '02. The grid placement was done the morning I turned 41. That was some birthday!!!

Since surgery, I have become a mentor to those who are considering it. My seizures have had a .999999 decrease!!!
I'm very happy that I had the lobecotomy.

The bad side of me is that I am a neat freak. Everything has a place. Alphabetical order, grouped by color, personal folders, etc. I can find that penny the bank says isn't mine or the one I didn't know was mine.

Vegas had 3 inches of rain in about 4 hrs on Tues. The valley was flooded!!

This Monday, 9/10, marked 53 weeks w/o seizures. I'm feeling great.


angie
 
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desigina replied to saxofone1's response:
I had an EEG monitoring at the hospital for seven days in August followed by an MRI of the brain with contrast. The EEG identified the section of my bbrain that is producing the seizures and the MRI detected a bony growth on the left frontal temporal lobe. I am trying to absorb all this without freeking out. They told me that the growth should be removed and sent be to get a Scat Scan done. Do you think that this will stop my seizures that I have been having since I was 8. Also is this genetic? I notice that my girls have spasms like a chill going through them. My older one jerks and slap herself at times.

Help...
 
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BlazingTiger responded:
Hi Haylen,
I have been enough of a pain in the butt lately that I really need no introduction,But I will anyway. I am BlazingTiger. Many of you know me as Jason. My favorite sport Football My Favorite team Is the Pittsburgh Steelers. Today was nice Windy somewhat. Temps in the mid to upper 70's during the day. At night Low 50's - upper 40's Sorry friends not into baseball or hockey. I live in Allentown, Pa.

Jason
 
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saxofone1 replied to desigina's response:
Hi D,

I will not tell you that surgery will stop your seizures. All cases of ep/surgery are as individual as the person.

Yes, ep can be genetic. It can also be for illnesses or accidents of past time
 
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saxofone1 replied to saxofone1's response:
D,

I'm so sorry for that incomplete post. My phone rang and I meant to hit cancel, not post.

Continuing on, I don't feel the docs would mention surgery if they didn't feel a positive outcome was possible was more likely to help than what is being done now.

What are your concerns? You are not wrong to be freaking out about this. The uncertains of life are very scary.

Before the final decision for surgery is made, you are likely to have a battery of tests. These tests will determine where your functions(sight, hearing, memory, etc) are located. They will also show how surgery might improve or inhibit them. The docs will leave the final decision to you. Mine certainly did.

Take a deep breath. Gather questions for yourself, your docs, and us so that we can help explain/answer your concerns.

angie
 
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dancer86442 replied to desigina's response:
Hello Desigina,

Do you recall if the DR called the bone malformation "chiari malformation?". I know That is a bone growth, that can cause seizures, but, not sure if it is Temp lobe involved. Try google or Yahoo Search for more Info. And if it is, yes, an operation will be needed. And the outcome is Usually successful. If I remember correctly, yes, the 'bone growth' can be genetic. And Yes, Ep can be genetic, also. But, keep in mind, seizures can be caused by Thousands of other Reasons.

Do you keep a Journal for you & your Girls? (Journal Info under Tips) May I ask how old the girls are & how long have you been noticing their 'odd' behavior? If I were you, I would have your neuro run tests on them, also! If they Do have EP the sooner they are treated, the better. But, I would recommend doing some 'homework' about Diets recommended for seizures, too.

Love Candi
 
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Haylen_WebMD_Staff replied to saxofone1's response:
A neat freak! COME ON OVER Angie!!!! I could keep you busy for years

What do you think about the Raiders this season? If they start winning, I might have to meet you in Vegas

Thanks for sharing your story - that seizure must have been terrifying. I'm so glad you had a good experience with surgery.

It's going to be triple digits in LA this weekend...uggg...send me an inch of that rain...
 
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Haylen_WebMD_Staff replied to hula_dancer73's response:
Hula,

Again, ((hugs)) to you. Thank you for sharing your story here.

I would love to see a pic of Lulu - I bet she is a LOVE!

Whenever I see your profile name, I think fondly of my wedding. Married 12 years ago on 9/27 on Maui. I wanna go back!

Haylen
 
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Haylen_WebMD_Staff replied to dancer86442's response:
Candi - no sabbatical allowed - lol!

Being "rushed" is the story of my life! My daughters said "why do you always say "hurry up!"? I need to work on my time management....

(((HUGS))) back at ya Candi!

H
 
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Haylen_WebMD_Staff replied to desigina's response:
Hi Desigina - welcome to the community!

You'll find some great, smart, supportive members here. I'm the WebMD moderator - I don't have epilepsy, my job is to bring you up-to-date news, provide resources and maybe spark some fun.

Please let me know if you have any questions or concerns about our community and I'll try to help!

Haylen
 
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Haylen_WebMD_Staff replied to BlazingTiger's response:
Jason, you are no pain to me! I'm really glad you are here.

I've never been to PA but I do love that Billy Joel song!

You'll have to ignore my posts about hockey if the Kings get on a roll. If not, I'll be silent. And look out for Angie and I - Raider Nation!

H
 
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saxofone1 replied to Haylen_WebMD_Staff's response:
Yeah, Haylen

I have had a compulsion for neatness and order since the single digit years of my life. If only I could my family that way.

If last week is what the Raiders are going to give me this season, then oh boy, I will be in for another embarrasing season. But I won't change my Halloween custom. White face/black stripes again. I need some of those shoulder pads you see in the "Black Hole" at the games.

People are saying that the new Raiders coach is too young for the
team. I'll give him a chance before I submit my ap for the job. How about being my asst?

That first seizure freaked out my mom. I simply wanted an explanation as to why and what is the next step. I was mad cause I wanted to go back to school. Finished 8th grade at home. Boring.

The seizure that freaked ME out is the one I wrote about in "what moved you to have brain surgery". I have had some crazy ones but that one is the only one that truly startled me.

The valley has dried up from that storm we had earlier this week and triple digits are here again. No rain in the near future, sorry.

angie


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