Sent by: Billie Jo Sepulvado, Zwolle, LA (USA)
Sent to: Hemifacial Spasm Association (HFSA) E-mail Group
Date: June 03, 2003
Subject: Greetings to All
Finally getting around to my first group email.
I want to thank you all for this fantastic group. I have suffered alone with HFS since 1986 (when I was 26). It brought tears to my eyes the first time I found this group & knew that I wasn't the only one with the weird spasms. No friends or family members ever understood. They got used to my spasms and didn't understand why I couldn't just get used to them too. I never have and it's been almost 20 years.
With all of the wonderful medical expertise we have available to us in this great nation, I was only offered pills & Botox®. I was told repeatedly by friends, family & every doctor I went to that brain surgery was out of the question & far too risky for "just twitches". Your website told me otherwise. Your profiles & MVD histories gave me hope & strength to investigate surgery on my own. I thought I would have to find a way to travel from Louisiana (where I live) to Pittsburgh to find a specialist to trust with the surgery. Through your site I found one name, Ann Ehlen, had had this same procedure in Shreveport - only about 80 miles from my home. I looked up the doctor & hospital she went to & made an appointment. I am now scheduled for MVD surgery on July 7th with Dr. Nanda at LSU in Shreveport.
After I scheduled my surgery, I finally got the nerve to join this wonderful group & submit my profile. Right away Jack O'Donnell sent me an email with the names of three other HFSA members in my state, one of which was Ann Ehlen. I sent her an email & we have been in constant contact since. She has generously offered me to join her as she meets with another HFS sufferer, June Bain Cullpepper, in Shreveport on June 12th. I can't believe that I will finally meet not one, but two other people that know what I'm going through!!! Wow! To know that I will be able to look Ann in the eye & discuss my much-awaited surgery is a great relief!
This group & the contact with June & Ann has put a smile back on my lopsided face. Thank you all for being here for me and the rest of us!!
Billie Jo Sepulvado
billiejo@sabine.k12.la.us
Permission granted the HFSA to post E-mail message on website.
Billie Jo Sepulvado, June 03,2003
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