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The Speak Up blog features essays and poetry by people living with neurologic disorders and their caregivers. Readers can also find letters to the editor.
Friday, April 05, 2013
What a Cure Would Mean: AVM

What would a cure for Brain Disease Mean to me?  It would mean everything!!

On July 17th 2012 I was working at my computer when I suddenly developed the worst headache of my life.  As someone who can count the amount of times on one hand that I have had a headache in my 29 years I knew something was wrong.  I thought if I lay down for a bit and rested my eyes it would go away but it only got worse so I made the decision to call 911.  This decision saved my life.

The EMTs, Doctors and Nurses all though I had a tension headache but decided to do a CT scan just to be safe and I am glad they did.  I had suffered from a brain hemorrhage and was bleeding into the right ventricle of my brain.  I was flown by helicopter to another hospital where they discovered that I had an AVM located in my right parietal lobe of my brain. The doctors figured that this was what had caused the bleed in my brain and wanted to let me rest and recuperate for 5-6 weeks before deciding on how to treat.  But 30 hours after my bleed I developed hydrocephalus and required an emergency ventriculostomy to reduce the pressure on my brain.  It was at this point that the doctors decided to transfer me to another hospital, UT Southwestern in Dallas as they felt UTSW was better equipped to deal with neurovascular issues.

Once at UTSW they kept me in the ICU and a week after my bleed they decided to perform a second arteriogram to determine how and if they wanted to treat my AVM.  This procedure changed everything.  They discovered that my AVM was fully intact and had not bled at all.  What had ruptured was an aneurysm that was located in the right ventricle of my brain.  Once it ruptured it became small and they were not able to locate it.  However after a week it clotted itself off and started to fill up with blood again.  It needed to be fixed and that Friday it was.  I was released from the hospital 3 days after my surgery with no deficits.

While I was doing and have been doing well after the surgery, the question still remains:  What do we do about this right parietal AVM?  The doctors have all agreed that the AVM and the aneurysm are totally unrelated as they feed off of two different arteries.  Thus my AVM is still considered to be unruptured.  It is approx. 2.5CM in diameter and is what my doctors refer to as being lacy and diffuse.  Because it has active brain tissue dispersed between the vessels, treatment becomes more risky.  Traditional surgery could leave me with strong deficits and Gamma Knife radiation only has a 75% success rate with a 5-10% chance of permanent deficit.  Because of these risks, we have elected not to treat it and just watch and see.

At the moment, I have no symptoms of my AVM and had I not had a ruptured aneurysm, I may never have known I had an AVM in the first place.  But the lack of symptoms does not negate the fact that there are certain things that I had wanted to do before finding out about my AVM that I now have to give up doing.  I was once passionate about powerlifting and mountain climbing.  I had plans to climb Denali and possibly complete the seven summits at some point in my life.  With the knowledge I have of my AVM, completing these goals has become a very risky option and I have had to give up on some of my dreams.  If we were able to find a cure for brain disease I would be able to achieve my goals and go on without the fear of my own condition looming over my head.

Thank you!

Cheers,

Lindsay Raber

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