My dad was just diagnosed with an AVM

I am 21 years old and my dad just told me that he was diagnosed with an AVM yesterday. He is 54 and he noticed his first strange headache/dizzy episode about a year ago. Since then he has had a couple of small episodes every couple of months and has just now got it checked out. He likes to work out and has always been a healthy strong-willed person. I am worried and dont know what to think right now. Any words from anybody could help. I am not in a good place right now. Thank you.

Michael,…

Believe in the love you have for your Dad. Your Dad will get the treatment he needs.
Believe me,…I know,…my Son and Daughter saved my life when I had my first brain bleed. Please see my “blog” on my page for details.
For now,…Michael,…trust and believe in your Dad, and show him the love you have for him.
Michael,…I hope this helps a lil’ bit.

William

Welcome Michael!



We all know that “not in a good place”–I imagine your Dad feels the same way. I have some suggestions:



1st, hang out here–a lot of good info and caring people. Invite him to sign on too.



2nd, get a 3 ring notebook and some paper in it. Create an AVM medical journal for your Dad. Use it to record everything: Symptoms, Medicines taken, dates, places of any tests taken, copies of reports, etc. You can’t know how valuable this will be in two years when you can’t recall details.



If at all possible, go with him to all the DR appts. Write down ahead of time all the questions you can think of to ask the DRs. You should each have a copy of these questions. Then as you hear answers, jot down notes. The info comes at you fast and furious! We found that after each medical appt, often in the waiting room, or when the DR stepped out of the room, or in the car, we would compare notes to make sure we each heard the same thing. It amazed us how much info one or the other missed.



I would try to be referred to the best team in your area (or out of your area). An AVM is nothing to mess around with. Get the best team working for you.



It’s ok to be scared–we’ve all been there.



Hope this helps.



Ron, KS

Ron,

That’s about as accurate as anything I could come up with as well. Thank you for saying it so eloquently.

– Tina



Ron, KS said:
Welcome Michael!

We all know that "not in a good place"--I imagine your Dad feels the same way. I have some suggestions:

1st, hang out here--a lot of good info and caring people. Invite him to sign on too.

2nd, get a 3 ring notebook and some paper in it. Create an AVM medical journal for your Dad. Use it to record everything: Symptoms, Medicines taken, dates, places of any tests taken, copies of reports, etc. You can't know how valuable this will be in two years when you can't recall details.

If at all possible, go with him to all the DR appts. Write down ahead of time all the questions you can think of to ask the DRs. You should each have a copy of these questions. Then as you hear answers, jot down notes. The info comes at you fast and furious! We found that after each medical appt, often in the waiting room, or when the DR stepped out of the room, or in the car, we would compare notes to make sure we each heard the same thing. It amazed us how much info one or the other missed.

I would try to be referred to the best team in your area (or out of your area). An AVM is nothing to mess around with. Get the best team working for you.

It's ok to be scared--we've all been there.

Hope this helps.

Ron, KS

Thanks Tina,

I fear that sometimes I might sound like a broken record…

ron, ks

I have an update! So my dad saw one of the best neurosurgeons out there (AVM is in his brain) and this surgeon doesnt even take patients anymore, he just teaches other neurosurgeons how to do their job. But, my mom is friends with one of his nurses soooooo, through that connection, my dad saw him on Tuesday and the doctor said his AVM is serious of course, but it is easily fixable, so that made us all feel a little better. The surgeon will be performing the procedures for my dad and we all feel much better about everything. I have been exploring this site and the positive attitude everyone has is very uplifting. Thank you everyone for the support, I will post updates on my page when they come. Thank you again.

Michael,…

Great news,…!!

Your Dad, you, and your family will be in my thoughts and prayers.

Your friend,…

William

That is great news. I hope all goes well. Keep us updated.