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AVM Survivors Network

Cerebellar AVM?

Hello,

And I was curious whether anyone here had a Cerebellar AVM?

Thx,
Duncita

My son did. Golf ball sized deep in his cerebellum. Had it removed after rupture 5 years ago. What’s your status?

Just found out I Have one two days ago! Haven’t seen the neurosurgeon yet to discuss options but very anxious to here others stories. Wish you much luck getting rid of urs!

Hi duncita,

There also is a sub-group for those with Cerebella AVM's that may provide you with great information:

http://www.avmsurvivors.org/group/avms-of-the-cerebellum

I have one.

I found mine after my bleed in 2013. Feel free to read my story. I had gamma knife September 2013. Results on first angioplasty this September was 50% shrinkage. Still have two more years to see if it all goes away. My gamma knife lasted a hour and 20 min. It can last from 15min to 2 hours. Have had a few issuers after the gamma knife but your lucky they have caught it before a bleed so they can try to resolve it. Here to answer any questions you may have. Prayers and hugs to you.
Niyani

Hi duncita, I found out I have a 3-4 cm size avm in the right side of my cerebellum. Been told its too risky to remove surgically or have embolisation so waiting to see if I can get gamma knife treatment. I also have other symptoms as a result of it which are causing more problems. Its a really scary time but im trying to keep positive. :slight_smile:

Contact Dr Robert Rosen in Lenox Hill hospital. I have the rarest AVM and was given no hope any where. Was burtally treated by doctors who had no idea how to mange this AVM. And he was the ONLY doctor that has been able to give me hope. And some type of life back. It’s def worth making an appointment. Good luck. My prayers are with you.
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Hi Duncita, I had a very large avm in my left cerebellum, they gave me slim to no chance if I did survive they said I would be a vegetable, well I found Dr Spetzler in Phoenix, Arizona. that was v24 years ago, I have balance issues and left side coordination, been very blessed, read the book on SApetzler, it is called The Healing Blade, an Amazing Dr, they removed my left cerebellum

Hi ruthie, I am very interested in your case as I have a 3-4 cm avm in my right cerebellum and have been told its inoperable as cause to many complications if they attempt to remove it. I live in the uk so have access to different doctor’s but you were originally yold the same?

Thanks Louisa!

Louisa is absolutely right, there is a sub group here of people specifically with AVMs found in their cerebellum. I'm a member but every case is different (i.e., mine was surgically removed at the end of 2006, but others have very different circumstances). I do not know all the details of your situation but a 2nd, 3rd, 4th, or even 5th opinion is always a good thing because in my experience (as well as time here) I have learned that sometimes doctor's know less then the patient's themselves and sometimes they know more. It all depends. Awareness is a huge factor for both doctors and patients. This is a great place to find doctors experienced in treating AVMs closest to you (and I have heard some great things about Dr. Spetzler in Az). Best of luck to you!