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Megan's Pseudotumor Cerebri Journey

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Hello my name is Brandi and this is my 12 year old daughter Megan. On October 4,2013 Megan and I went to the eye doctor for a routine eye exam and our world was turned upside down. Megan was diagnosed with pseudotumor cerebri. Basically that means her brain thinks and acts like there is a tumor but theres not. Her cerebral spinal fluid levels are really high and she needed a shunt placed in her head to help drain the fluid immediately. We were sent to Shands hospital in Gainesville and a shunt was placed in her head. That was on 10/2013 and things just got worse from there. Megan started with severe headaches and nausea. She was unable to attend school and function as a 12 year old should. The doctors at Shands werenot helping so I found a GREAT doctor in Orlando and Megan statred going there. She has since had 11 operations on her brain because the shunts only work for a limited time and then stops working. She has also been diagnosed with Chiari Malformation(this is where her brain is desending out of her skull and into her spinal column). During one of her operations she had a brain bleed and had left sided weakness for a few months. She's also had an infection in her stomach and had to have the shunt removed because the infection was in the tubing of the shunt. She was on 21 days of antibiotics and then had to have the shunt replaced. The last shunt surgery was on 7/11/2014 where she had a shunt placed in her head and her back. As of this writing Megan's headaches have returned and we are waiting to have an MRI done to see what the next step should be. Everytime Megan is in the hospital I stay with her. I'm out of work during that time and no longer have paid time off to take. My husband works and comes down to see us on his days off.The hospital is 2 hours from our house so gas and tolls are eating up what little money I get when I work. If you can help with a donation for gas,tolls or even food( hospital food is horrible) it would be appriciated.  Thank you Brandi and Shaun 
I have been asked by several family and friends where checks could be sent if they did not want to go through this website. You can send them to our P.O. BOX.  P.O. BOX 1062 Dunnellon FL 34430

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Donations 

  • Anonymous
    • $50 
    • 9 yrs
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Organizer

Brandi Boss Lattinville
Organizer
Ocala, FL

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