As most of you know in August 2012 I came down with 2 rare vestibular disorders Superior Semicircular Canal Dehiscence and Bilateral Perilymph Fistula's. It took me 1 year, 13 doctors and traveling out of state 3 times just to be diagnosed. I had surgery locally, it failed and also left me new symptoms. Unfortunately because these conditions are so rare there are only a couple Neurotologists that specialize in the surgical treatment of the conditions. Im currently seeing a doctor in Louisana. He has done more of these surgeries than any other doctor in the United States and people literally travel all of the world for surgery with him. He has a 98% success rate. I traveled to see him in November and had to put $5000 on my credit card for his specialized testing. After 8 weeks of medical management and my recent hospitilization he has decided I need to have surgery to prevent further or permanant damage. The issue is that this doctor has opted out of participating in any insurance plans and all testing and surgery has to be paid upfront. The hospital is out of network and wants a $5000 down payment at the time surgery and I will still be responsible for 50% of the hospital fee's. I have already spent $10,000 in the past 18 months from seeing doctors, testing, vestibular rehab, medications and surgery. I tried to get approved for a loan but was denied.
I know some people are probably thinking how bad can an ear issue be. Well first let me tell you that my inner issue gives me almost completely neurological symptoms. Let me explain a few.
1. Vertigo- a combined boat and ferris wheel sensation that is constant, feeling that the enviroment is rotating to the right
2. Dizziness- a bobble head feeling, my head is to heavy to hold up
3. Imbalance- stumbling, falling, spacial disorientation
4. Headaches and severe ear pain
5. Nausea- I take anti-nausea every 8hrs everyday
6. Brain Fog- short term memory problems, words finding issues, problems with reading comprehension
7.Hypercusis- over sensitivity to sound
8. Oscillopsia/Nystagmus- bouncing vision, stationary objects jump and rotate, my eyeballs constantly shake
9. Autophony and hearing my heartbeat and foot steps in my ear
These symptoms have affected my life so much that my quality of life has really diminished. It has affected my job, my finances, my relationships, my self esteem. I literally feel like a shell of the person I used to be. At times I feel as though Im going crazy. I barely leave the house except to go to work.
This has been such a humbling experience and its hard to ask for help. Many have encouraged me to set up this website. I want to thank you all for your support whether it be words of encouragment, prayers or financial.
God bless you all!
P.S.- Please excuse the typo's ,run on sentences and missing words as my brain is not quite functioning. ;)
- Victoria Sar
- amanda obrien
- Heather Morse
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