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Amanda M.

December 11, 2016

I am ... A Survivor

When I was 11 I was diagnosed with a rare progressive neurological disease called MoyaMoya Disease. What MoyaMoya is an occlusion of the carotid arteries in the neck which makes the patient have TIA' also known as mini strokes. When I was 12 I had two bypass surgeries too get more blood flow to my brain. The surgeries worked great until 2009 when I started having more mini strokes. On May 12, 2009 I had my 3rd brain surgery called a burr hole surgery to allow more blood flow to my brain. I felt great until November 2015. I went to my neurosurgeon to get more scans  of my head and they showed no blood flow to the back of my brain. At that time my neurosurgeon stated he had no more surgery options for me.

I gathered my medical records and sent them to Stanford medical center to be reviewed by Dr. Gary Steinberg a doctor who specializes in patients with MoyaMoya Disease. I got a call from his office stating they wanted to see me.  I went out to have an ceberal angiogram and an MRI/MRA to show him the lack of blood flow. I met with him in his clinic and he in fact had another surgery option for me. The surgery he suggested was called an omental bilateral bypass. They would harvest an artery from my stomach route it to my brain and do a craniotomy.  My surgery was scheduled for June 22nd 2016. I had the surgery and the surgeons said the surgery went well. 

In the first 24 hours after surgery I suffered a small stroke. I also ended up getting pneumonia and fluid around my heart. I was so sick I ended up on a ventilator for a few days.  After that I was on the ventilator 2 more times and spent a month in the ICU. Once I was off the ventilator for good I was transferred to the step down ICU unit for another week. I finally got to go home but spent a week in an inpatient Rehab center doing physical, speech and occupational therapy. After that I did outpatient physical, occupational and speech therapy. 

I was discharged from my outpatient physical, speech and occupational therapies in October. I am doing my regular daily activities I was doing before the stroke. I am feeling great and go back for my follow up with my surgeon in January. I can't believe it has been 6 months since my surgery and how well I am doing. i am hoping to go to one of my favorite vacation spots which is Disneyland! Thank you for taking the time to read my story. I hope I have been an inspiration!

 

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