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AVM Survivors Network

Calling all parents

I just thought it would be nice to have a roll call of sorts for all the parents here.

I’m the parent of a 19 year old young woman whose AVM was discovered on 3/7 after she had a seizure. On 3/11 she had surgery to remove it.

I’d love to connect with other parents here…

I’m not 100% sure if you were looking specifically for parents of children with AVMs, but I guess since you didn’t really say otherwise, I technically fit into the category! I have a 2-year-old son, but I was the one with the AVM.

Nevertheless, welcome!

Nea’s Mom,

I created a “group” within our community called “Parents of AVM”. Would you like to help moderate this group? What do you think.

http://www.avmsurvivors.org/group/parentsofavm

Ben

Hi Jake M. Sorry I wasn’t clear… but I was hoping to connect with other parents whose child had/have an AVM.

Hi Nea’s mom there are lots of parents who’s children have AVM’s you’ll no doubt be hearing from them soon.

I am a mother of a four month old child with an AVM on her left frontal lobe. Does anyone else have a newborn with an AVM?

Hi am Tryston’s mom he is 11 and was diagnosed with a brainstem AVM when he was 4.

Hi I am maddys mom. She is 11 and has a facial avm.

Hi Nea’s mom,
Welcome, this group is the most helpful one I’ve found on the web. My son is 10 months now and starting to recover. He still requires further procedures, still to be decided, but he is doing well. I assume Nea’s AVM is cerebral? How is she doing?
LL

Lynn Lederer said:

Hi Nea’s mom,
Welcome, this group is the most helpful one I’ve found on the web. My son is 10 months now and starting to recover. He still requires further procedures, still to be decided, but he is doing well. I assume Nea’s AVM is cerebral? How is she doing?
LL

Hi Lynn!

Nea is doing well, thanks for asking. She recently had her 6 week post op check up and was medically cleared to do whatever she feels she can.

She’s still struggling with focus and feels her mental processing is still slower than it was. And that’s something that worries her. But we’ve seen such progress in the past 7 weeks that I hope it continues and her mental abilities return pretty close to what they were.

Where was your son’s AVM located? As hard as it’s been dealing with my daughter’s issues, I can’t imagine how it must feel to have your baby going through this. How are you doing?

Erica (Taryn’s Mom) said:

I am a mother of a four month old child with an AVM on her left frontal lobe. Does anyone else have a newborn with an AVM?

Hi Michelle. Welcome. How is your daughter doing? What is the plan for her medically? How are you doing? It’s such a shock to find that there’s this thing lurking in their brain.

Maddysmom said:

Hi I am maddys mom. She is 11 and has a facial avm.

HI Maddys mom. Ben has created a group for us parents. You might want to check that out too. HOw is your daughter doing?

Hi Nea’s Mom,

My son is also 19. We found out about his AVM (the size of a golf ball) when he had a seizure last October. Luckily he has had no bleed and we are looking into embolization and craniotomy. We are flying to Arizona to meet with Dr. Spetzler in three weeks to discuss the plan so that Kyle can decide on moving ahead or waiting. How does a 19 year old, who is functioning well with no deficits, make the decision to have a risky surgery to prevent a bleed that could occur tomorrow or 30 years from now? I just can’t imagine.

I am glad that your daughter is recovering so well. I think the emotional recovery must be the hardest. I know what you mean when you say she may not be ready for this site yet. It took me a while to look at it without feeling panic.

I wish both you and daughter well.

Trish said:

Hi Nea’s Mom,

My son is also 19. We found out about his AVM (the size of a golf ball) when he had a seizure last October. Luckily he has had no bleed and we are looking into embolization and craniotomy. We are flying to Arizona to meet with Dr. Spetzler in three weeks to discuss the plan so that Kyle can decide on moving ahead or waiting. How does a 19 year old, who is functioning well with no deficits, make the decision to have a risky surgery to prevent a bleed that could occur tomorrow or 30 years from now? I just can’t imagine.

I am glad that your daughter is recovering so well. I think the emotional recovery must be the hardest. I know what you mean when you say she may not be ready for this site yet. It took me a while to look at it without feeling panic.

I wish both you and daughter well.

Hi Trish.
You know, in some ways, Nea was lucky in that she was in no position to make a decision… her dad and I had to. I can only imagine how your son feels, having to make this decision.

Our children seem to have had similar experiences… headaches leading to “migraines” leading to a seizure and the discovery of the AVM.

I hope your son’s path turns out as well as Nea’s.

You and he will be in my thoughts. Please update when you can.

Hi Trish, Hi Neas Mom,

I know Im a little off topic but im 20 and my 14 year old sister passed away from AVM 4 months ago yesterday. She had been having headaches, and the doctors just believed it to be a sinus infection. Nothing else was done to see if there could be any other reason for her headaches. She passed away in her sleep. Im not trying to scare anyone or bring panic. I just wanted to share my story. I know my sister is in a better place and I know shes fine. Im glad that yall have the chance to make a decision :slight_smile: you still have time and any decision is better than no decision. Im praying for both of yall. You not in this alone .

God Bless :slight_smile:

Nea’s Mom said:

Trish said:
Hi Nea’s Mom,

My son is also 19. We found out about his AVM (the size of a golf ball) when he had a seizure last October. Luckily he has had no bleed and we are looking into embolization and craniotomy. We are flying to Arizona to meet with Dr. Spetzler in three weeks to discuss the plan so that Kyle can decide on moving ahead or waiting. How does a 19 year old, who is functioning well with no deficits, make the decision to have a risky surgery to prevent a bleed that could occur tomorrow or 30 years from now? I just can’t imagine.

I am glad that your daughter is recovering so well. I think the emotional recovery must be the hardest. I know what you mean when you say she may not be ready for this site yet. It took me a while to look at it without feeling panic.

I wish both you and daughter well.

Hi Trish.
You know, in some ways, Nea was lucky in that she was in no position to make a decision... her dad and I had to. I can only imagine how your son feels, having to make this decision.

Our children seem to have had similar experiences.... headaches leading to "migraines" leading to a seizure and the discovery of the AVM.

I hope your son's path turns out as well as Nea's.

You and he will be in my thoughts. Please update when you can.

Reese Pope said:

Hi Trish, Hi Neas Mom,

I know Im a little off topic but im 20 and my 14 year old sister passed away from AVM 4 months ago yesterday. She had been having headaches, and the doctors just believed it to be a sinus infection. Nothing else was done to see if there could be any other reason for her headaches. She passed away in her sleep. Im not trying to scare anyone or bring panic. I just wanted to share my story. I know my sister is in a better place and I know shes fine. Im glad that yall have the chance to make a decision :slight_smile: you still have time and any decision is better than no decision. Im praying for both of yall. You not in this alone .

God Bless :slight_smile:

Nea’s Mom said:
Trish said:
Hi Nea’s Mom,

My son is also 19. We found out about his AVM (the size of a golf ball) when he had a seizure last October. Luckily he has had no bleed and we are looking into embolization and craniotomy. We are flying to Arizona to meet with Dr. Spetzler in three weeks to discuss the plan so that Kyle can decide on moving ahead or waiting. How does a 19 year old, who is functioning well with no deficits, make the decision to have a risky surgery to prevent a bleed that could occur tomorrow or 30 years from now? I just can’t imagine.

I am glad that your daughter is recovering so well. I think the emotional recovery must be the hardest. I know what you mean when you say she may not be ready for this site yet. It took me a while to look at it without feeling panic.

I wish both you and daughter well.

Hi Trish.
You know, in some ways, Nea was lucky in that she was in no position to make a decision... her dad and I had to. I can only imagine how your son feels, having to make this decision.

Our children seem to have had similar experiences.... headaches leading to "migraines" leading to a seizure and the discovery of the AVM.

I hope your son's path turns out as well as Nea's.

You and he will be in my thoughts. Please update when you can.

Hi Reese.

I’m so very sorry for the loss of your baby sister. It’s hard to understand why something that could be found was not found in time. That’s something that Ben’s group here is working on… the walk to promote awareness.

I’m glad you found this group. I hope it helps you in some way deal with your loss. You sound like a strong young man and I wish you peace.

Hi Nea’s Mam
I am a father of a 16 years old son who has AVM.

Alireza said:

Hi Nea’s Mam
I am a father of a 16 years old son who has AVM.

Hi Alireza,

Nea is also waiting for 6 months for final confirmation that no new problems have arisen. Wishing you good news at the end of your 6 months!

My son Daniel had a bleeding and then two craniotomies to remove an avm.