My Father's AVM Story

In 2007, my father had surgery to remove an acoustic neuroma (tumor on nerve to ear). He was told that the recovery would be only six weeks; his recovery process took nearly six months. He had to re-learn to eat, talk, read/write, walk, etc. because the tumor was "shipwrecked" and a portion of his cerebellum was also removed. His symptoms and recovery were similar to that of a stroke victim.

Over the past 18 months, Dad had what we thought were recurring symptoms. Last October, he even went to the ER for a headache that he described as pressure so intense, he felt like his head would explode. After multiple diagnostics, doctors told him they couldn't find anything and he was referred to a neurologist again. Somehow, despite all of the tests over the past 4 years, his cerebral AVM was never diagnosed.

Two weeks ago, after visiting us in Texas (he lives in Montana), he was in the Denver airport and suffered a seizure. At the time, it was suspected that he had had a stroke. The hospital did the best they could in trying to contact his next of kin, but I didn't find out what had happened until after a failed embolization and a 12 hour long craniotomy. I later learned the exact diagnosis: Dad had a cerebral AVM that had ruptured resulting in a severe brain hemmorhage.

I've been told the surgery was successful, with the AVM "removed" and all resulting bleeding stopped. He is said to be making the expected progress; the swelling in his brain has decreased enough for the stint to be removed and he is now off the ventilator & breathing on his own with a tracheostomy. Yet, scans show most of the right hemisphere of his brain suffered damage. Unless he wakes up, no one can say to what extent.

I had never heard of an AVM until Dad's diagnosis. It was while I was doing research online that I came across this incredible group. I am so grateful to have a place to share my story and talk with others who have had AVM experiences.

Gretchen, first let me say welcome to the group. This is indeed a wonderful place to get information and support. Secondly, I am sorry for what your father is going through and for what you, as his daughter, are going through.

How long ago was it that your father had the craniotomy? I'm sure you're overwhelmed by all of this. I too had a major hemorrhage as a result of my AVM. While it was a devastating injury, I am here to tell you that not only did I survive, but I am doing really well considering.

In the first days and weeks after my bleed and surgeries, my doctors had prepared my husband for the worst, even telling him to bring my two children to see me to say goodbye. They had no idea if I would wake up and if I did, what sort of mental and physical impairments I would have.

Recovery was long and painful and continues even today. I have many deficiencies and am most likely permanently disabled, I am alive and very here for my family.

I tell you this so that you know doctors can never say with any certainty what will happen with brain injuries. Be patient, this type of injury takes many months to recover from. Your father may no get everything back, he too may have deficits but that doesn't mean he won't recover.

Let us know how your father is doing and please reach out to any of us if you have any questions or if you just want to vent. We're all here to support each other as only people who have been there can. I wish you and your father the very best.

Trish,

Thank you for sharing your story with me! It helps immensely to know that others have had similar experiences and have made such strides in recovery.

The craniotomy for the AVM was April 4th (almost 3 weeks ago).

It's extremely overwhelming trying to cope and process everything that's happened. After the surgery 4 years ago for his tumor, Dad and I had many conversations about Power of Attorney, Living Wills, etc.. I, too, was being prepared for the worst-case scenario; I expected to go to the hospital to make some difficult decisions and say goodbye.

I've had many medical issues, surgeries, and close calls myself (not with an AVM), so I'm no stranger to hospitals and the ICU. But to see my full-of-life father in his current state makes me feel helpless. I think the worst part is having the doctors say over and over that they "just don't know".

So I've been keeping busy trying to manage his personal affairs, praying fervently, and venting/seeking support thru avenues such as this. I am so very grateful to have the opportunity to share my story and learn about others' experiences. I know the road ahead will be a long and difficult journey. Yet, I am inspired and hopeful for dad's future knowing that people such as yourself have experienced a similar journey. Thank you!