Arteriovenous Malformation (AVM) – Our Journey, through the eyes of a parent.
In the summer of 2001 were on a family camping trip in east Texas. We noticed our son Ethan’s arms and legs were shaking. It was a subtle shaking but Wende knew something was wrong; it took me a little longer. I have a way of rationalizing things and ignoring anything that would cause undo stress. Long story short, when we returned home Wende pursued the problem until she found a doctor that ordered an MRI of the brain. Ethan was diagnosed with an Arteriovenous Malformation (AVM) in the center of his brain. He was ten years old at the time. The AVM was “stealing” blood from parts of the brain. The AVM is in the Thalamus which is in the center the brain. The Thalamus controls motors movements in the body. At the age of eleven Ethan underwent surgery in California and as a result of the surgery suffered a stroke leaving him with various other issues. He now has slowed speech, his walking is affected and he still shakes uncontrollably during fine motor skill based activities.
Most of the Hospitals we spoke with would not attempt to do anything with his AVM. Some wanted us to send money and MRI’s and they would look at them but probably not do anything with it. We came across Stanford University Medical Center, which is one of the leading research centers for AVM’s in the country. They said they could treat Ethan’s AVM using embolization. Others said that embolization was an option but that they really did not think that they could treat it with any success. Stanford University Medical Center was confident they could treat it with a number of small emolization surgeries. An embolization of an AVM is where they go in through the leg with a catheter all the way up to the brain where they would shoot glue, not unlike superglue into the lesion in an effort to block the flow of blood to the AVM itself.
Shortly after the surgery, Ethan woke up and talked with us then he went back to sleep. The nurse came in to check on him a couple of times. Each time he was a little harder to wake up. About three in the morning they tried to wake him up but they were unable to get him to wake. There was quite the flurry of commotion and upset doctors and nurses. We found out later the medication they gave him to keep his blood pressure low, kept it too low. This cause an ischemic stroke, there was not enough blood pressure to supply the brain with the oxygen that it needed. With the use of another medication, the doctors were able to get his blood pressure stabilized and he began to wake up. Once he was awake the nurses started asking him questions to see how alert he was and to test his ability to answer. One question was “how old are you?” and he answered with the correct answer. The next question was “where do you live?” He answered with “Aladdin”, then “Jasmine” he got a confused look on his face and start crying. He knew this was not right, it was apparent he could not get the correct answer to come out.
By this time it was morning. He was not talking very well was struggling to get his words out. He was very ataxic, meaning his arms and legs would go into violent movements when he attempted to work them. We quickly realized that he could not walk, nor could he feed himself and he was struggling with his speech. At breakfast they brought him some food. Wende was helping him eat while she talked to him. Some things he would say okay in a labored speech pattern and other things would come out incorrectly. At this time he asked her “How is that one over there…? and gestured to the room next to us. This was a little unexpected. During the night there was a little boy, about two years old, in the room next to us. The rooms were divided with sliding glass walls and most of the time they were open enough that we could see and, somewhat hear what was going on. The little boy was having some kind of lung related breathing problems. Wende had taken his mother some water sometime during the night. The mother was scared and said they told her there was a good chance that he would not make it. The next morning, Wende asked the nurses about him and they said he was doing great, he made an unexpected turnaround and he was fine now. He had been move out of ICU to a regular room. It surprised Wende when Ethan asked “How is that one over there, gesturing toward the other room. Ethan had been asleep during the commotion going on in the next room during the middle of the night. Not only was he asleep, no one could even wake him up and his blood pressure was extremely low. Wende told Ethan that the boy was fine. Ethan looked at her and said “I held him last night”.
To say the least we were very worried. The doctors soon told us that during an ischemic stroke, affected brain cells die off and become toxic, in turn killing the otherwise good brain cells next to them. It can take up to forty-eight hours or longer to realize the full effects of the damage. Over the next three days, Ethan’s functions worsened. His motor skills deteriorated, his speech became very slow and labored, if at all. He was incontinent, could not feed himself, etc… We spent the next week in the hospital while they worked with him. They told us that he may never regain any control or get any better than he was right then. This was devastating.
Once Ethan was released from the hospital, we spent the next two weeks in Stanford trying to get Ethan to the point that we could get on a plane and go home. We had to check out of the hotel we had reserved and move to the Ronald McDonald house, which is a wonderful place to help deal with what we were going through. We finally made it home and began to attempt to deal with the issues Ethan was suffering. It was a whole new world for us. Our son who three weeks earlier was a normal eleven year old kid that happened to shake a little bit was now operating at the level of a two year old. He could not walk, talk, go to the rest room, feed himself, play, or do anything he used to do. He basically sat in front of the TV and stared. He would try to talk with us but when he did, all that came out was an un-intelligible audible noise. We later found out that in his head he knew what he wanted to say and he thought he was saying it, he just could not figure out why the words coming out were the wrong ones. It was awful.
We spent a good six months all day, every day at Health South Rehabilitation. It took time and work but he can now talk. It is slow but he can talk. He can walk but it is clumsy. He is able to do many things now but they are much labored.
It has now been eight years and we are still battling the AVM. Ethan is nineteen now. He is living in an apartment with a friend and has care givers that come in and help him out during the day with daily living needs that most of us take for granted.
We have setup an update area so that you may keep up with the latest progress. Feel free to post comments here. We have been doing this for a long time and we have learned much about AVM’s and the medical field in the process. We would be happy to share any information we have or just to be there for support along the way.
Chris Parsley http://www.chriscrosses.com