Julie's Craniotomy(s) (Skull base surgery)

My Story

Hi, I am Julie Bolton, born and raised in Durham, NC. I am divorced and have two children that are 9 and 11.  A week after I turned 35 in July of this year, I received the results of a CT scan of my head.  I have bilateral (left and right side) Semi-Circular/Superior Canal Dehiscence Syndrome.  SCDS is a very rare condition caused by an abnormal thinness or hole of one of the boney canals in the ear.  What that means is, I (personally) have a rather large hole in the bone barrier that is between my inner ear and brain that effects my every-day life (hearing, balance, vision, etc.) The only fix for this is two major surgeries at separate times, 2 middle fossa craniotomies.

My first middle fossa craniotomy is scheduled for December 2020 to repair the dehiscence on the left side. I will be out of work for at least six weeks after a week in the hospital.  I will only have a total of 10 days PTO to use at that time and that won’t come close to covering the expenses I have for me and my two kids.  For those of you that know me, you know I am very independent. I have come a long way after a nasty divorce and starting my life over so creating this GoFundMe isn’t easy, but it’s my last resort.  My job is my sole income, I do not receive child support or any other financial help whatsoever. The money donated will cover rent, bills, childcare, medical bills, etc. and help us more than you could ever imagine. Donations are urgent as they will help me prepare to pay bills and expenses when I am out of work because of this unexpected and terrifying situation.

Thank you for reading this.  Thank you for helping and if nothing else, please keep me and my family in your prayers!

God Bless!

 

More about my story and how SCDS Impacts Everyday Life

SCDS causes hearing problems/loss, balance problems (vertigo/dizziness) and visions problems (nystagmus) that are triggered by loud noises, intracranial pressure and sneezing and/or coughing. People with this condition hear a lot of internal sounds (heartbeat, footsteps, eyes moving, chewing, breathing, blood flow, body movements, etc.) but these sounds are amplified due to the lack of the full bone barrier.  Best way I can explain it, I feel like these sounds are on a radio and the volume is all the way up. Since these sounds are so loud to me, it interferes with my regular hearing (when someone is talking to me).

Autophony is also another symptom of SCDS.  Autophony is “hearing one’s self”.  This is one of the symptoms that bothers me the most.  Imagine talking into a karaoke microphone and having the actual speaker right next to your head, or in your head… that’s how I feel.  I always feel like I am yelling and my own voice makes me dizzy and causes nystagmus (eyes shaking).  I am incredibly sensitive to loud noises, but especially my own voice, other’s voices and my own kids’ voices. I can’t tell you the last time I sang, I miss it. I have vertigo that makes me so dizzy I cannot keep my balance sometimes. My kids try to be quiet, they don’t shout or yell and don’t turn the radio up too loud because they know it affects me negatively.

For years, I have suffered from symptoms of this condition but nobody ever knew what was going on or was able to give me a diagnosis. This condition was only discovered in 1998 therefore doctors don’t know much about it.  The theory is that people with SCDS were born with thinning of the bone that worsens over time.

There are two possible surgical approaches that can repair the dehiscence.  One is where they enter surgically through the ear canal and repair it (procedure is done and you go home same day) and the other is called a Middle Fossa Craniotomy (they will cut a 4in x 4in space from my skull, lift my brain and resurface/plug the hole).   Unfortunately the easier and less invasive approach through the ear canal is not an option for me, as the base of my skull is thinning and my brain sits too low, it would be too risky for me per my skull base surgeon.

Donations

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  • E Szopinski 
    • $100 
    • 2 d
  • Laurie Geschrey 
    • $50 
    • 6 d
  • Glen Pietraszewski 
    • $50 
    • 7 d
  • George Vaughan 
    • $100 
    • 7 d
  • DebOrah Lange 
    • $100 
    • 7 d
See all

Organizer

Julie Bolton 
Organizer
Durham, NC
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