Erin's Story

The great thing about moving to a new place (L.A. for me) is realizing that although vibes and cultures may vary, we all really have a lot in common. We have good days and bad, obstacles and triumphs. We work hard, we love hard and we push forward. We live! No matter what's going on in your life, as you continue to read this series, I hope that you are inspired to see, if others can make it through, so can you! Here is Erin's story.

1) Describe the type of AVM you have? What was the first sign?

I have an AVM in the right occipital lobe of my brain that is 5-6 cm in size,which is about the size of a medium sized tomato. The first signs of my AVM were headaches. These headaches weren’t like any other headache I have ever had before. That is how I knew something wasn’t right, and I needed to see the doctor. 

2)How did you eventually come to receive treatment?

I went in to the hospital for an MRI at 4:30 on a Thursday afternoon. By 8:00 Friday morning, my doctor was calling to tell me they found an AVM in my brain, and I had an appointment with a neurosurgeon Monday morning. At that appointment the surgeon looked at me and told me he didn’t know enough about AVM’s and that he wasn’t going to touch me. The next day, Tuesday, I had anappointment with an eye doctor to see how much of my vision had been affected.Then, that next day, I had my first appointment with my endovascular neurosurgeon, Dr. Siddiqui, who has now preformed 4 angiograms and embolization with the 5th on March 21st 2011. After he feels the entire AVM has been embolized, I will be going in forgamma knife radiation.

3)Who are/were your main doctors, where were you treated and how was the care?

My primary doctor who sent me for the MRI and discovered the AVM is Dr. Rajiv CParikh MD, from Dunkirk, NY. My endovascular neurosurgeon is Adnan H. Siddiqui,MD, PhD through University at Buffalo Neurosurgery, UBNS. I have received my surgeries at Millard Fillmore Gates Hospital. The care I have received fromall three offices is outstanding. They really make you feel like a person with feelings not just another patient.

4) How is your health now?

 I am still in the process of treatments to obliterate my AVM.

5) How has having an AVM changed yourlife?

Learning of my AVM at the age of 19, I learned to enjoy what you have in life while you have it. My AVM also changed my life in the sense that I am not able to do many of the things I enjoyed before they found my AVM.

6) What has been your biggest challengein the battle with AVM?

My biggest challenge in my life with an AVM is continuing with my education and getting people to understand why I can’t do some of the things I used to do.

7) What do you think a documentary about those surviving AVM can achieve?

A documentary about AVM survivors could spread knowledge about the disease and inspire other AVM survivors to not give up hope.

8 ) What are your hopes for the future ofAVM research?

I hope that we can find a cure for AVMs and a way the find an earlier diagnosis.

9) What has been the biggest lesson you've learned throughout your journey thus far?

I have learned a lot about myself and many of the people that were a part of my life. I am a much stronger person physically, emotionally, and mentally than I ever thought. I have also learned what friends and family members truly care about me and which ones only act like they care.