Sent by:      Juliet Rhoden, Lithonia, GA (USA)
Sent to:      Hemifacial Spasm Association (HFSA) E-mail Group
Date:          December 06, 2004
Subject:      Re: Happy Anniversary - Juliet Rhoden

Dear Group,

Thank you for your Anniversary wishes.

Today, on my Anniversary of being SPASM FREE, I went to see my OB/GYN (no, the rabbit did not die), he was the one who started me on the quest of actually doing something about my spasms. He looked at me, did a double take and hugged me. Words were not needed.

HEARING
Yes, I have been spasm free since I regained consciousness (three days after surgery). I have some hearing loss and hypersensitive hearing in my right ear. Most times I cannot tell where sounds are coming from, this requires extra caution when driving especially when there is a lot of traffic or emergency vehicles involved. But, I would have this surgery again, faster than the speed of sound.

DIZZINESS
I remain a bit unbalanced. I still have some dizziness but I have learned to live within my abilities. When necessary I use any prop available to me – persons, trees, cars, walls or plopping down on the ground if needed. But, I have no regrets regarding the surgery; I would happily get back on this merry-go-round.

FATIGUE
I laugh as I write this because now I get to sleep a lot and no one minds. They all seem to understand. Is anyone still plagued with fatigue 12 months after his or her surgery? The first part of my body that is usually affected by this overwhelming need to lie down is my neck. Then my head gets heavy and the rest of me follow. Sometimes I actually feel like I am moving in slow motion. I would happily lie down, if my smile could be found.

FACIAL PALSY
98% gone. I only have a slight delay when raising my eyebrows. The left brow gets to its destination before the right. My smile is even. Like some of you I now look at everyone and smile great big goofy grins. I am so happy, I often get weak in the knees.

GOLD WEIGHT
Eleven months after my MVD I had the gold weight removed. My doctor thinks I should have a pendant made from it. My right eye is slightly smaller than the left but my doctor says that is also the case with most people.

Have I said that I would have this surgery again, even with all the complications I have had to endure this past year. The worst part was putting my family through all those months of agony and worry. But they have said that they would do it all over again.

So, one year later I am here and I am grateful for this site. I am grateful to you and for your time. Without you I would still be hiding behind my shame, embarrassment and fear. Without you I would be the absent family member. Without you I would be the reclusive friend. Without you I would still be hating myself and wishing I was someone else. But, because of you the tears have stopped and I smile once again.

You are the best of the best.

With all my love

Juliet Rhoden
rhoden@bellsouth.net


Permission granted the HFSA to post E-mail message on website.
Juliet Rhoden, December 07, 2004

 

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