My Husband Died from AVM Rupture

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My Husband Died from AVM Rupture

24 August 2005

I had never even heard of an AVM. I'm sure Tom had not either. He suffered from headaches throughout his life, but not being a complainer always attributed it to allergies, stress, etc... He was a successful , all American guy, loved by his wife of nearly 20 years, his three teenage daughters. He had a great position as a partner in a big 4 CPA firm. He loved life, Cape Cod, the Green Bay Packers, golf, family. He was a devoted son. He was 44.

On the morning of December 26, 2004, he and I awoke alone in a cozy Bed and Breakfast in South Jersey about 5 hrs from our home, in the Boston area. Our three girls were at my sisters house. We were making love when suddenly he said, "Stop, My head." Those were his last words. He got up from bed, tried to "walk it off" pacing around a bit...before collapsing on the floor about 30 seconds later. I was dialing 911 before he hit the floor.

He was rushed to a local hospital and after a quick CT scan, I was told probable anuerysm and he was then rushed to Jefferson Hospital for Neuroscience in Philadelphia, about 40 minutes away. He was rushed into emergency brain surgery. In the waiting room, I received a call from OR telling me it was an AVM rupture. That is the first I had ever heard of an AVM.

My sister and I did an internet search to learn as much as we could about it. The 6 plus hour surgery was a success in that it saved Tom's life and the AVM was removed. However, I was told his brain stem had been herniated and the impact of the rupture on his brain was like having his head go through a windshield at 90 mph. I was told the AVM was in his speech center and may have impacted his receptive and expressive speech.

He remained in a drug induced coma for 4 - 5 days. As he started to come out of the coma, he would open his eyes, but his look was blank. He did not recognize me, my face, my voice, unaware of who or where he was. He was on a respirator, but over time began to breathe over the respirator. He moved the left side of his body, but not the right. The surgeons recommended tracheotomy and feeding tube. However, with no evidence of neurological functioning I refused these artificial means of life support. Tom had made his wishes clear to me on this subject long ago and I had a Health Proxy authorizing me to make such decisions in the event he was not able to do so. It was agonizing. I had to meet with surgeons and members of the ethics committee to discuss these issues.

On January 13, 2005, the respirator was removed. Tom continued to breathe on his own. We made arrangements to transfer him to a facility in the Boston area. On Friday, January 14, 2005, Tom died in an ambulance in Greenwich, CT en route to Massachusetts. Our three daughters last saw him on Christmas night. His mother last saw her only child on Christmas Eve.

In hindsight, there were subtle signs of Tom's illness. The headaches...long-time friends, family and colleagues all seemed to be aware of these. Apparently, he had bottles of Ibuprophen in his car, in his desk, with his secretary, in his briefcase...and at every client's. He was having difficulty sleeping in the prior 6-12 months, and would often get up and sleep in his recliner. He blamed this on work related stress...he was working 50-60 hrs per week. In the week or so before he collapsed, he once complained to me that he felt numbness on his right side. And, once he had a sudden headache after we made love...but it subsided.

Now he is gone. I know what an AVM is. I continue to second guess myself as to what I/we could have done to prevent this. I did have each of my three daughters have a brain MRI done to rule out an AVM for them.

Thanks for listening to my story.

Discussion, comments, or questions: Jeanne

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