Heredary AVM's

Hi, I'm a 28 year old female with a 13 month old son and a Fiance. I want another baby for my son to grow up with but I"m worried about passing on my AVM. I am wondering what the chances are of passing one on.

Thanks,

Monica

Hi Monica…I have an avm in my cerebellum too. I am 46 years old and have my surgery scheduled for November 9th to remove it. My docs said that a bleed would be catastrophic and that my avm is positioned well for surgery. While I haven’t had the gamma knife, it was an option. I have a condition called hht - which basically means I have avm’s in my lungs and brain. I have spent the last year undergoing multiple embollizations for avm’s in my lungs, and chose the surgery because it is a 100% fix. Every person’s situation is different, for me the surgery felt like the best choice and the right thing for me. From what I have read, the Gamma Knife sounds pretty cool. One thing about these treatments, is that they are so amazing from a technical standpoint, that it helps distract you from the seriousness of the situation. Lots of people here have said the GK is actually not that bad at all - I think the hardest part of it is having to wait the 3 years to confirm that it was successful. Let us know how it unfolds - you are in my thoughts!

Thank you for writing me, it meant a lot to hear your story. I think anyone with an AVM is brave. I hope your surgery goes smoothly. It was so nice to find this site and find I am not alone. the Doctor is right, my AVM bled and that is how I found I had one and it almost killed me. I had an surgery to remove the clot and take the pressure of my brain then the main vein was embolized. It’s been a long hard road of recovery and I’m nowhere near done yet. I am happy you discovered yours before a bleed and have a chance to prevent the worst.
you are in my thoughts too/

Hi Monica,

My avm was in the cerebellum, I say was because I had GK and I’m claiming it gone.
I had a bleed that led to a stroke 12-12-08 then I was given a stroke with embolization 04-16-09.

I had GK, on 7-22-09. GK was not a problem, they put me to sleep before they put the frame on and
gave me the right numbing medicine.

I was tired after GK for about two weeks, exhausted. The tiredness went away, my head felt tight/pressure and I went to emergency 3 times. They checked with CT scans and MRI’s, but there was not any swelling. I took steroids all three times for a week at a time, they didn’t see anything, but I felt pressure in my head. I am 50 years old so I have other things going on, I am pere-menopausal to be exact. I noticed my head feels tighter when my menses comes on. My head also feels tighter when it rains. My head doesn’t feel tight now. My right side was already numb from the stroke that was given to me during the embolization, it had stopped being as numb, since GK it is getting more numb,
I’m not sure if my right side numbness that seems to be increasing has anything to do with GK or if it is a side effect from the stroke that made it numb in the first place.

Everybody is different as well as every avm is different, you may not have any problems at all.

They don’t expect you to have problems from GK, if any at all, until at least 6 months down the road
and they can deal with it.

The ER doctors, my Neurosurgeon and Neurology think that I am doing well since GK.

Peace,
Ameenah

thanks Ameenah for writing me and telling me your story. I appreciate it, it helps me.
Monica

Your Welcome, Monica

Monica Buchanan said:

thanks Ameenah for writing me and telling me your story. I appreciate it, it helps me.
Monica

Hey Monica,

I had a bleed in my cerebellum back in April. I had a craniotomy to remove the avm on June 2 of this year. The cerebellum controls balance, walking, coordination etc…I am having problems with this. However, because of my age and I was generally in good health before the bleed, I am progressing very quickly. I have all my mental cpapcities about me. As me and my husband say: I am temporarily physically handicapped. I am a teacher and ready or not I have to go back in January. I am hitting the gym trying to get ready. Very very slow on the treadmill but go everyday (the faster you can get your body working the better chance of living a pretty normal life) trying to get there. Its funny same gym I went to before I got sick. I see people around me pounding the machines running etc… I think-wow that use to be me…not anymore. You can read my story

Hi Monica,
i have a daughter that is 20 year old that had a AVM burst in her cerebellum 10 months ago. How do i get your story? Plaese send if you can.

see Heidi story below- thanks Craig

February 25, 2009

Heidi Stay History

Heidi Stay is a 19 year old female. While at BYU-Idaho, Heidi collapsed during a dance class. She was taken to Idaho Falls regional hospital and was diagnosed in critical condition with an AVM (brain vessel rupture) in the back of her brain/head. Brain surgery was performed on January 26th, 2009 by Doctor Greenwalt in the cerebellum part of the brain (controls motor skills and respiratory function). After the operation, Heidi was in the Intensive Care Unit for approximately 3 weeks. She was for the most part non-responsive for the first 5 days. Because of the operation (AVM) the following areas of Heidi’s body were affected dramatically: a double vision/vision problem, balance, is having to relearn to walk, talk, and eat and other physical motor skills including breathing on her own.

On the 16th of February Heidi was released in a very stable condition to Health South Rehabilitation to begin her physical therapy and road to recovery.

Georgia Thompson said:

Hey Monica,

I had a bleed in my cerebellum back in April. I had a craniotomy to remove the avm on June 2 of this year. The cerebellum controls balance, walking, coordination etc…I am having problems with this. However, because of my age and I was generally in good health before the bleed, I am progressing very quickly. I have all my mental cpapcities about me. As me and my husband say: I am temporarily physically handicapped. I am a teacher and ready or not I have to go back in January. I am hitting the gym trying to get ready. Very very slow on the treadmill but go everyday (the faster you can get your body working the better chance of living a pretty normal life) trying to get there. Its funny same gym I went to before I got sick. I see people around me pounding the machines running etc… I think-wow that use to be me…not anymore. You can read my story

Hey I was 27 when the AVM ruptured in my cerrellum. I went into a coma for 3 days and spent the next 2 weeks in ICU and 2 weeks following that in the Neuro Ward. I had a 4 month old baby and I was still breastfeeding. I couldn’t eat, breathe, move my left side, or void, or lift my head up,or talk. I am sorry for you and your daughter and what you had to go through. I am now relearning to walk and talk. My vision is blurry, I can move my left side now, I no longer need a catheter, I am now eating regular food and my old voice is slowly starting to come back. I find things improve it is just taking a long time and lots of hard work. I am doing oxygen therapy which is supposed to be “the slow miricle” for stroke recovery. either December or Janruary I will be going in for gamma knife surgery to hopefully remove this cursed AVM. I hope my story helps and feel free to be my friend if you have any more questions don’t hesitate to ask and if you have questions for my fiance who has been my caretaker he is happy to answer any. He went through a lot of crazy times with all this.

sincerely
Monica

Hi Monica, first of all are we related lol? I have recently been diagnosed with an AVM of the cerebellum and I feel your pain with having a young child. I know if you are like me the thought of being away from him for any amount of time is terrifying and you wonder how surgical outcomes would affect you. I have decided to have the craniotomy and I wonder if anyone out there can tell me about their experiences? I was fortunate enough not to found out about my AVM from a bleed. Monica, I wish you the best and my prayers are with you.

Hi Monica,
We should chat! I had a “large” bleed from a “small” avm in my cerebellum, but it is “near” the surface so they are recommending surgery for me. It is not scheduled yet. My bleed was in Nov just before i turned 39. I was on disability for 3 months with tough symptoms to deal with but i just wnet back to work full time and im totally exhausted. I have a 4 year old son. I would love to talk to you more, I will friend you and comment on your wall too. I am also on facebook if you want to friend me there too.

Hi Monica,

My son has 3 AVMs. His Dr. said that they are not hereditary, but if one child has one, siblings may also have one since they are congenital. Luckily, my daughter doesn’t have any!

You and your fiance are so brave! I know that it’s a long, difficult journey. Keep your determination and I’ll include you in my prayers.

Monica Buchanan said:

Hey I was 27 when the AVM ruptured in my cerrellum. I went into a coma for 3 days and spent the next 2 weeks in ICU and 2 weeks following that in the Neuro Ward. I had a 4 month old baby and I was still breastfeeding. I couldn’t eat, breathe, move my left side, or void, or lift my head up,or talk. I am sorry for you and your daughter and what you had to go through. I am now relearning to walk and talk. My vision is blurry, I can move my left side now, I no longer need a catheter, I am now eating regular food and my old voice is slowly starting to come back. I find things improve it is just taking a long time and lots of hard work. I am doing oxygen therapy which is supposed to be “the slow miricle” for stroke recovery. either December or Janruary I will be going in for gamma knife surgery to hopefully remove this cursed AVM. I hope my story helps and feel free to be my friend if you have any more questions don’t hesitate to ask and if you have questions for my fiance who has been my caretaker he is happy to answer any. He went through a lot of crazy times with all this.

sincerely
Monica

hey sorry it took so long to get back to you. Just had Gamma Knife Surgery and I think it went pretty good, considering. Where are you located? Maybe we are related. Lol. Are you on facebook? I am if you want to add me. AVM’s are pretty scary forsure. Would like to chat. Ttyl

Sherry Buchanan Myers said:

Hi Monica, first of all are we related lol? I have recently been diagnosed with an AVM of the cerebellum and I feel your pain with having a young child. I know if you are like me the thought of being away from him for any amount of time is terrifying and you wonder how surgical outcomes would affect you. I have decided to have the craniotomy and I wonder if anyone out there can tell me about their experiences? I was fortunate enough not to found out about my AVM from a bleed. Monica, I wish you the best and my prayers are with you.

That’s good. I am glad you are doing ok. I just reciently got out of surgery,and have pic’s on facebook. I wish you the best in your recovery. I have noticed my memory sucks and I can’t really focus on much. But I am trying to change this. Thanks for sharing, it is a real brave thing.

Erica Kennedy said:

Hey Monica, I had a bleed in my Cerebellum in September 2008 when I was 19. I had radiotherapy to seal the vessels off in December 09 and have to say I’m not feeling any different to before, which I guess is good? The doctors and stuff all told me not to really expect anything for about two years so I guess we’ll wait and see?