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AVM Survivors Network

My daughter is 4 has AVM


#1

I was looking for someone to talk to about my daughter having an AVM


#2

Where is her avm?


#3

Honestly i don’t know specific terms , I just know it’s on her left side toward the back . She was hospitalized for 11 days with seizures and they found it in an MRI. They will be doing an angiogram soon to see how big and deep it is .


#4

Kristen, this is a supportive community with helpful members that are happy to share their experiences. If you have specific questions, post them here. You will likely get more responses. :slight_smile: We have a couple of groups that may interest you - Parents of AVM and AVMs with Sturgeon-Weber and other syndromes. The links are below, or you can see the full list of available groups by choosing Groups on the top left of the page. All the best!

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

http://www.avmsurvivors.org/group/avm-related-syndromes-presenting-with-portwine-sta


#5

MY daughter has an AVM on the left side in the groin. She had it since birth and it continued to grow until they had it embolized at age eleven.We found that process frightening but it worked out fine. It is not longer a problem for her particularly although sometimes we believe her abdominal pain is related to that. I hope you get good advice from an expert in AVM at a teaching hospital
She is eighteen now.


#6

I'm no expert on children but I feel that if she has it in any place that can be removed with surgery, this might be a great time to do it. I had mine above the left ear and it was making it difficult for me to talk so I made any sense (expressive language disorder). Once it came out, problem solved.

I don't know any facts about your situation so if this advice is misplaced, was the best I could do!


#7

I don't have any advice since my AVM was treated so long ago. But I'm now a mom and my daughter is this the age I was when mine was discovered and I had surgery at age 11 in 1983. Way back then treatment options were limited and prognosis slim. By a miracle I believe I survived my hemorrhage and 13 hour craniotomy surgery to remove it. It was on the back left side near the junction of the Occipital and temporal lobes about the size of a ping pong ball. I had ZERO lasting complications.
I would just advise 2nd and 3rd opinions from other doctors across the country if time allows.
Best wishes and prayers sent your way.


#8

Kristin, I’m sure you are very stressed about your baby girl. All our prayers and thoughts are with you and her.

If you can find the energy amidst the stress, ask as many questions and do as much research as you can, or treatment options, appropriate hospitals, and maybe later on rehab options. Speaking from experience, I know this is very hard. If you can’t do it, ask a friend or family member to help. People want to help but don’t know what to do, so you just need to ask and someone will love to take this on.

Finally, AVM treatment is tricky business, so you might want to get a couple of opinions. Barrow in Phoenix has a great 2nd opinion program. Send your scans and clinical notes and they let you know their approach

Best of luck and many prayers


#9

Best wishes… Please keep us updated. You will need as much support as possible from people that understand what your going through.


#10

Kirsten, sorry to hear about your daughter' AVM. Good thing though is that it has not ruptured yet. My son was 5 when his AVM ruptured 20 years ago and it was more complicated as the doctors had to stabilize his hemorrhagic stroke first before they can start treating his AVM. With regards to AVM treatment, the doctors would need to get a good image of her AVM first so they can grade it according to the degree of difficulty of surgically removing it. She already had an MRI so the next step is angiogram so they can see the entire structure of her AVM, its size and its feeder and draining veins. The angiogram will also show whether its location is 'eloquent' (important area of specific brain functions) or not. What I can advice at this point is for you to learn more about AVM and its possible treatment and that you consult several neurosurgeons regarding potential treatment and associated risks. The field of neurosurgery has been through amazing technological advances. My son's AVM had recurred and was accidentally discovered when he had an MRI after an eye check-up last year. We had to consult several neurosurgeons to finally decide the best treatment options. Happy to report that his AVM had been removed via embolization followed immediately by microsurgery. Gamma Knife was considered an option but because of the size of his AVM (more than 4cm) and his young age, it was decided that microsurgery was the best option. Below are some basic links that you may find useful. Being a mother myself, I can understand the emotions you are going through. Be strong for your daughter. She needs you. All the best, Marissa

http://www.uptodate.com/contents/arteriovenous-malformations-in-the-brain-the-basics?source=see_link
http://www.uptodate.com/contents/brain-arteriovenous-malformations?source=see_link
https://www.youtube.com/watch?v=RrkrgaH_qo4


#11

Also consider consulting “Best Doctors” advice.


#12

Hi Kristen. My AVM was 'discovered' when I 14. I had suffered from increasingly bad headaches and sickness for 2 years. My GP kept saying I just had migraine and my mum had to fight really hard to get me referred for a CT scan. When an appointment finally came through it was decided that I needed an immediate operation to relieve me from Hydrocephalus. This was a symptom of a Cerebellar AVM. I remember doctors telling me that although AVM is present since birth they are often diannosed at times of hormonal changes - around 5, at puberty and at menopause. I have never had treatment on my AVM since it is stable and doesn't cause many issues. It is also unruptured.


#13

Kristen
My AVM was discovered and treated in 1984 when I was 9 years old. In that time treatment was in experimental phase. I am fine thank God. Medicine has advanced a lot since then and I am sure that God is with you and he will help your daughter.
If you want to talk please contact me. My email is ■■■■■■■■■■■■■■■■■■■■■■■■■■
I will be happy to help. I will also pray for you and your daughter.
God bless you
Angie


#14

Hi Kristin, your daughter is fortunate to live in a time of superior medical technology. My AVM experience was in 1992-1993 and all is well. Take great comfort in knowing the technology, procedures, therapies are all so much more advanced then back then. And they were pretty advanced back then!

Come here often. You're not alone. We all have yours and your daughters backs.

Bill


#15

Kristen Ebell, is the AVM in her head? Where is it specifically?


#16

Hi Kristen...sorry to hear that your lil one is one of us and so are you. I know this just makes you feel so vulnerable. I am the parent to a child with an AVM in the occipital region of the brain.(Left rear of head)With this comes so many things and they happen so fast in many ways and in others so slow...which can lead to frustration. My son had his first episode when he was 8 and then gamma knife and life was humming along pretty good. We adjusted and he had little issues, that I believe was because he was so young.And then just this past Feb. it happened again. Now he is 17 and a senior in HS and there is more damage. He is struggling and so am I. We both feel like our lives have been blow up and we are scrambling to pick up and find the pieces.Don't worry you will become accustomed to the lingo and it will become like another language. This site is amazing and you will meet some really great people here. This is the one thing that I didn't have the first go round so this time it has saved me in that I have an outlet and many people have come forward to share and help me calm my frustrations and help give me hope. And that is the best part. As the parent we search trying to find everything so we know what we are up against.Because all we see is our baby in this horrible way and we are left helpless. We can't protect nor save them from the harm and pain.And we want to know how to deal and what is normal and what is next and is it going to be ok.I know I was all over the place, while on the outside everyone thought I was ok but on the inside I was/am a wreck. Crying is my new normal these days...I do this in the shower. And this is my new topic and it never stops rolling in my head. I know with time it will calm and we will put a life together and we will go on because it did before and as you see everyone else does too. But for now I am still living in the shell shock mode. And yes counseling does help but unless they experience and talk with people like this they struggle with help. So I use it as a relief button so to speak. Take the meat and throw out the potatoes if you will. This is a trauma for both of us and I say that only because it is just my son and I.We lean on each other in that we are dealing with the loss of our old lives and we are moving into are new ones.It will happen for you as well and educate yourself as much as possible because that takes some of the fear away. Hugs to you both and all. Your in our thoughts, much love.


#17

HI
Often with abdominal AVM they do not recommend removal. We saw more than one specialist who said the same thing.The approach was much different than in other areas of the body. Things however may have changed since the time of our consult in 2007. For years it was watch and wait as it grows. When it grew during puberty and caused pain then the embolization was done.
Laurie


#18

Kristen,
It is important to keep in mind that those with an AVM in the brain will have much more serious problems than those in other areas.
Laurie


#19

Hi Kristen.
I'm so sorry to hear about your little girl, and I apologize for my delayed response. In 2013, my then 7 year old daughter was diagnosed with an inoperable, grade 5 AVM in her basal ganglia/thalamus region. I'm sure that since your first post you've been overwhelmed with information, comments and thoughts. If you're still seeking perspectives, I'd be happy to talk with you about our experiences. She's been receiving cyberknife radiation treatments at Stanford Children's Hospital. If you're interested, I could send a friend request and we could communicate directly or share contact information.

Best wishes.
Diane