Brain AVMs: 3-Year-Old's Prognosis

General
1

Hi. My name is Michelle and my dearest friend's three-year-old son, Connor, is being treated for multiple brain AVMs. We have never met anyone in this situation and the medical team doesn't seem to like questions. So, we wonder, "What's his prognosis?"

People noticed that Connor's head looked large and a hair stylist noticed around age 2 that his "soft spot" hadn't closed. He has not had any neurological problems. He walks, talks and plays like other preschoolers. After several doctor visits, the July 2010 MRI confirmed that there are multiple AVMs in his brain.

In September 2010, he had his first embolization surgery. Afterwards, some hair fell out from the back of his head from the radiation. Otherwise, he continued life as a normal kid.

In January 2011, his "soft spot" closed. At first, his parents thought this was an answer to many prayers. However, Connor started complaining of headaches. And when his medical team started the angiogram last week, they confirmed that the situation had grown more complex.

The very next morning, he and his mother took a medical flight to NYC, where he's now under the care of Dr. Alejandro Berenstein. In fact, he's just checked in for his third surgery. (Last week, Dr. Berenstein embolized three AVMs.)

This surgery was moved earlier than originally planned because the team learned that there's considerable pressure on Connor's optic nerve, threatening his vision.

He has not had any AVMs rupture.

If you share a similar story, please let us know your outcome, how your life is today. I know that each case is unique, but we're just looking for some ideas about what Connor's future could be.

Thanks.

2

I’m so sorry to hear about Connor. It is challenging for adults to deal with an AVM. I can’t imagine what it’s like for a three year old and his family. Every situation/brain is unique as is treatment so I’m not sure anyone can accurately give a prognosis (even the doctors). There is so much unknown. Hopefully some other parents can share their experiences with you so you know what his family may come to expect during recovery. I’m curious what led to having diagnosed. Was it because his fontanel had not closed? I will pray for Connor, his family and you. :slight_smile:

3

Thanks, Stephanie, for your rapid response. To answer your question...Several people noticed that his head appeared large and the pediatrician did indicate that it measured large. And his hair stylist noticed that his "soft spot" hadn't closed when he was about 2. So this led his mother to press the pediatrician for the referral to the pediatric neurologist.

Thank you for your prayers!

4

Your best friend should look into the AVM Survivor Network’s Group:

Parents of AVM

There are so many parents that could be very helpful!

5

Michelle,

An AVM in a young child is a very scary proposition. I can tell you that pressure is obviously something the doctors want to avoid. Likewise, if doctors can catch all this before anything ruptures, Connor will be much better off. He may have some slight deficits, but those should be tolerable with rehab. As scary as it is to hear all this, I can guarantee that Connor is way ahead of the game if doctors can catch everything before any hemorrhage occurs.

Otherwise, my experience is just take things a day at a time. Connor will likely have to be monitored for years to see if any of the AVMs have regrown. So there will be many years of cerebral angios and MRIs to check after all this is done.

6

Thanks, Tina, for this insight. I didn’t know that AVMs can regrow!

Tina White said:

Michelle,

An AVM in a young child is a very scary proposition. I can tell you that pressure is obviously something the doctors want to avoid. Likewise, if doctors can catch all this before anything ruptures, Connor will be much better off. He may have some slight deficits, but those should be tolerable with rehab. As scary as it is to hear all this, I can guarantee that Connor is way ahead of the game if doctors can catch everything before any hemorrhage occurs.

Otherwise, my experience is just take things a day at a time. Connor will likely have to be monitored for years to see if any of the AVMs have regrown. So there will be many years of cerebral angios and MRIs to check after all this is done.

7

Michelle,

We were initially told that once the AVM was removed, it was gone forever. Well, that's true to a point. If there is even a cell remaining from an AVM, it can "recruit" adjacent cells to regrow. It takes a few years to grow, thank goodness. My daughter had to have a second craniotomy about 14 months later. We're waiting for angio results comparison now to see if she will require another one.

Honestly, just taking things a day at a time will be the key. Don't worry about tomorrow or 6 months from now or adulthood. Focus on getting Connor through today. When tomorrow gets here, his parents will have plenty of time to figure out a plan for tomorrow. For me, it got overwhelming to think past today.

Please wish Connor and his family the best for us.

-- Tina

Michelle Forsythe said:

Thanks, Tina, for this insight. I didn't know that AVMs can regrow!

Tina White said:

Michelle,

An AVM in a young child is a very scary proposition. I can tell you that pressure is obviously something the doctors want to avoid. Likewise, if doctors can catch all this before anything ruptures, Connor will be much better off. He may have some slight deficits, but those should be tolerable with rehab. As scary as it is to hear all this, I can guarantee that Connor is way ahead of the game if doctors can catch everything before any hemorrhage occurs.

Otherwise, my experience is just take things a day at a time. Connor will likely have to be monitored for years to see if any of the AVMs have regrown. So there will be many years of cerebral angios and MRIs to check after all this is done.

8

I will relay your message to Connor’s parents. Thanks, Tina!

9

Michelle,

Your concern for Connor is evident. I am 19 years old and an AVM was discovered for the first time in my head when it hemorhaged in December of 2010. I met the top neurologist in my area who discovered the AVM. He immediately recommended that I check into the emergency room in St Luke's Roosevelt Hospital so that I can be under the care of Dr Berenstein and his team. We were told, and over time we have learned first hand that Dr B is the best! He has dedicated his life to treating neurological disorders such as AVMs, and he has even developed the treatment of embolization, an enormous medical break-through.

While I do not know much about Connor's situation, I can assure you that he is in the best of hands. I could not imagine considering putting my life in anyone else's hands. Dr B and his crew gave me back my life!

I hope everything goes well for Connor. Please feel free to ask me any questions, and I will try my utmost to help out.

-Birdie

10

Hi Birdie! Thanks so much for sharing! I am glad to hear that you've gotten your life back.

After his second trip to NYC, Connor had eye surgery in Memphis about a week ago. Pressure was building on his optic nerve, threatening the vision in his right eye. The brain-eye doc made a slit in the optic nerve, and fluid gushed out, a good thing! Connor's wearing glasses now and seems to be OK vision-wise. He's going to a pediatric neurologist soon because his left hand is numb and sometimes he falls when walking.

It seems that he's had more problems since having these embolization surgeries. Unfortunately.

Birdie said:

Michelle,

Your concern for Connor is evident. I am 19 years old and an AVM was discovered for the first time in my head when it hemorhaged in December of 2010. I met the top neurologist in my area who discovered the AVM. He immediately recommended that I check into the emergency room in St Luke's Roosevelt Hospital so that I can be under the care of Dr Berenstein and his team. We were told, and over time we have learned first hand that Dr B is the best! He has dedicated his life to treating neurological disorders such as AVMs, and he has even developed the treatment of embolization, an enormous medical break-through.

While I do not know much about Connor's situation, I can assure you that he is in the best of hands. I could not imagine considering putting my life in anyone else's hands. Dr B and his crew gave me back my life!

I hope everything goes well for Connor. Please feel free to ask me any questions, and I will try my utmost to help out.

-Birdie

11

Michelle,

I am extremely excited for your friend that Connor's brain/eye dr made the right decision, there-by being able to save his vision. Interesting that you say Connor is experiencing numbness in his left hand- The way I discovered my AVM was when my right side went numb, the most extreme area being my foot, and it was less and less severe as it went up my body. This affected my balance, - maybe similar to what Connor is feeling. When my AVM was discovered, it was determined that it had bled, and was putting pressure on the are of the brain which controls the sense of touch- also near the area which controls vision. This was on my left side, towards the back of my head, a bit lower than my ear. Maybe this is something your friend should mention to the dr?

I don't know where your friend lives, but if they are able to get to nyc, I highly recommend Dr Berenstein- he is tops! he is the director of Beth Israel's Hyman-Newman Institute for Neurology and Neurosurgery at Roosevelt hospital in NYC.

All the best!

-Robin
Michelle Forsythe said:

Hi Birdie! Thanks so much for sharing! I am glad to hear that you've gotten your life back.

After his second trip to NYC, Connor had eye surgery in Memphis about a week ago. Pressure was building on his optic nerve, threatening the vision in his right eye. The brain-eye doc made a slit in the optic nerve, and fluid gushed out, a good thing! Connor's wearing glasses now and seems to be OK vision-wise. He's going to a pediatric neurologist soon because his left hand is numb and sometimes he falls when walking.

It seems that he's had more problems since having these embolization surgeries. Unfortunately.

Birdie said:

Michelle,

Your concern for Connor is evident. I am 19 years old and an AVM was discovered for the first time in my head when it hemorhaged in December of 2010. I met the top neurologist in my area who discovered the AVM. He immediately recommended that I check into the emergency room in St Luke's Roosevelt Hospital so that I can be under the care of Dr Berenstein and his team. We were told, and over time we have learned first hand that Dr B is the best! He has dedicated his life to treating neurological disorders such as AVMs, and he has even developed the treatment of embolization, an enormous medical break-through.

While I do not know much about Connor's situation, I can assure you that he is in the best of hands. I could not imagine considering putting my life in anyone else's hands. Dr B and his crew gave me back my life!

I hope everything goes well for Connor. Please feel free to ask me any questions, and I will try my utmost to help out.

-Birdie

12

Birdie:

We live in Mississippi, just 17 miles south of Memphis, Tenn. However, Connor has already made two trips to NYC as a patient of Dr. B’s. He’s scheduled to go again in a few weeks.