NABIL'S STORY

Nabil's Story

A few months ago, I had a misstep regarding the recovery from a recent AVM surgery. I was in Memphis, TN staying with my family. We took the two and a half hour trip to Little Rock to have my doctor, James Suen at the Univeristy of Arkansas for Medical Sciences, take a look. As sometimes happens, my thoughts were far off. Not in "the South" at all but out West, in California, as I was anxiously awaiting my return to LA where I now call home. Well, the appointment went fine, and we came up with a plan to get everything back on track as we always do.  After my appointment, I was still completely absorbed in my own momentary challenges. I walked out into the waiting room and saw a young man around my age. He turned slightly toward me, and I noticed the facial signs that we shared a similar form of Arteriovenous Malformation, our rare birth deft. Nabil Rahman was introduced to me through a mutual friend, and although I could tell he was slightly shy or maybe just reserved, he was engaging and inspiring. I was able to put my own angst into perspective while I listened to him discuss his journey. I wanted to give him a chance to share more of his story in his own words...

"[The picture above is me] giving farewell to Dr. Suen, undoubtedly the most kind and humble hoctor that I have come across in my life. My life was a mess, absolutely distraught when he shown me the hope of light. There was a time I locked myself inside the room for 6 months thinking about committing suicide every now and then. Standing near the Lake in Baridhara DOHS and thinking of jumping off and ending my life. I had no confidence when I left school. I was heartbroken. My friends never understood my feelings. I felt like a laughing stock at school.Then through the AVM Survivor site, I met people who had a similar condition like me.They gave me a lot of support, and through them, I found out about Dr. Suen. At that time, my situation had worsen. My facial nerves were getting damaged which caused suicidal pain. Dr. Suen told me to come to US as soon as possible as my life was in real danger. I had to wait 6 months to get visa. Those 6 months waiting were the worst days of my life! When I reached Little Rock, I met Dr. Suen just coming out from a surgery looking cool as ever. Even though, there isn't a cure for facial AVMs, he gave me assurance that everything was gonna be fine. I believed in him. My first surgery was in May 20 2013, which was the most important surgery of my life. It took 16 hrs to save my facial nerves from getting fully paralyzed.
There was partial paralysis at first. Then I had several surgeries over the next 2 yrs to get my life to a steady path.
The last 2.5 yrs. have been tough for me. But the good news is my AVM is stabled for now. Now I can concentrate fully on my college life. Finishing my graduation in the next 4 yrs will be my ultimate target.
I will always be grateful to Dr Suen and his team for giving a new painless life!

Hope to see you in January!

Fingers crossed!"

~ Nabil

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

I have a congenital Vascular Malformation called an ArterioVenous Malformation involving entire right side of my face and jaw. Bleeding from my lower gum was the first real sign that I had.

2) How did you eventually come to receive treatment?

I was treated with several glue embolizations and surgeries in Singapore and Bangkok with no improvement.Then I was referred to Dr. Suen in the US from the doctors in Singapore and through AVM Survivors .org members for further treatment who is specialized in handling complex AVMs.

3) Who will be your main doctors now that you've left the states?

I will try to come by for a check up each year. There are a couple of specialized maxillofacial surgeons in Dhaka whom I knew had handled facial AVMs in the past. They [have known about] my condition from the beginning. I will take their advice and check in regularly for my own safety.

4) How do you feel your health will progress in the future?

At the moment, my AVM is stable. Basically, during the puberty stage, AVM tends to grow at a faster rate. Now that I have surpassed that time frame, I hope it remains the same and doesn't grow back aggressively. But there is a lot of uncertainty about my health in the near future which I am concerned about.

5) How has having an AVM changed your life?

Having an AVM has helped me to be more patient, thankful and appreciative towards life. I thank the Almighty who gave me a loving and supportive family. My parents have been with me throughout my journey fighting AVM. Without their support, I could have lost faith in myself a long time back.

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

There is not one, but two challenges battling AVM. Handling constant pain and depression have been tough for me. When the swelling became more apparent. Whenever I would go outside my house, people used to stare at me continuously and ask me questions about whether I have mumps, cancer or whether it spreads through physical contact or not. I used to be bullied a lot at school calling me a blow cheek or doing something to aggravate me. The feeling of being a different looking guy than the rest made me feel miserable. Looking back, school life really dented my confidence.

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

A documentary will help to increase more awareness.There have been many incidents where people came to me in public places asking about my condition out of curiosity. For research, you need funding. Cancer is well known everywhere in the world. You can get Cancer research funded quite easily. But that's not the case with AVMs which is very rare and can be more deadly than cancer.

8) What are your hopes for the future of AVM research?

I really hope disciplinary AVM clinics not only in the US but across the globe can find a cure. The treatment is not a certain one depending upon the location of the AVM, it might even vary from case to case.

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

Life is beautiful if you know how to live it. We all know life is full of struggles; everyone has to go through hardships at some point some way or the other. But what is more important is never to get bogged down, always have faith, be brave and move forward in life. Always have a purpose in life. With determination and strong will power, no one can stop you from achieving your ultimate goal.

Me, Rafa (story to come) and Nabil bundled up but on the mend. The 3 survivors ;)