It all can be very confusing for us as patients and I don't really feel the doctors all agree on the diagnosis/prognosis just due to our conditions being so...
Hi, I'm so glad to have found this group! I have a Venous Angioma in my left frontal lobe, and also a "white spot" on each lobe (looked like the size of a...
Glad I could be a little help. The second opinion should give you the confidence you need to make a decision. Good luck and keep us posted. Vascular ...
Cheryl, thank you so much for your insights about all of this. We are so confused and just want some answers. Our present plan is to see what the Cincinnati...
Hi Darla, my name's Cheryl. I saw your posting and thought I'd send you some information to look into. I'm going to give you my story first, then refer you to...
oops! just www. ... === message truncated === ____________________________________________________ Start your day with Yahoo! - make it your home page ...
Thank you so much for your thoughts, it would be nice to have answers but this seems extremely rare in pediatrics. Hopefully I will learn something that our...
Darla, I don't have children with this problem. I, myself, have a capillary telangiectasis on the pons of my brain stem. I just wanted to tell you that my...
Hi, my name is Darla. My story is about my son, 2 year old Trent, the sweetest little pumpkin head I know. When he was about 9 months old I started to notice...
Hi Sara. I had GK 2/22/05. They only uncomfortable part of it is the head frame. It is awkward. When they put it on, I won't lie, it hurts. They use 4 ...
Well, I saw the neurosurgeon this morning, and the verdict is in. I'm going to have a gamma knife procedure on June 13. I have read a lot of the clinical and...
Yeah, I did. I've been meaning to send you a thank you note, but it's been really busy here at work, and I have no memory. (But at least now I can blame it...
Hi, Kaye. What exactly is gamma knife? I'm not familiar with it, and I haven't found anything about it in the research I've done. Maybe you could give me...
Hi Sara. My name is Kaye. I live in Marathon, FL(in the keys). I am 47. I don't have an AVM. I have a CA (cavernous angioma). I was diagnosed Christmas...
Hi, my name is Sara, and I'm new here. I'm 18, and I'm a college freshman in Alabama. I recently found out that I have an AVM in my left frontal lobe. It ...
There is a page regarding radiosurgery/gamma knife treatments on the Angioma Alliance website. There's also a current thread on the Community Forum addressing...
Hi all, My CA is in my brainstem -- had a craniotomy to no avail back in '97 after a bleed. Had another bleed in December 2000, after which I was recommended...
Kaye, Hi again, its Tony, unfortunately nobody in this Cavernous angioma group ever responds, or maybe we are the group- ha, if there is anybody else the...
Hi there. Anyone have had the gamma knife for treatment of their CA? I just saw a nerosurgeon that highly recommended it for mine. Does anyone have any...
Hi everybody, I'm new to the group. I have a Cavernous Angioma in my right Temporal Lobe. Has anybody in here had surgery for theres? Has anybody in here had...
I was diagnosed with CA after a bleed in 1994. I bled again in 1998 after I discovered I was pregnant. Saw doctor at Emory University in Atlanta, GA and was...
Hi BJ, Please try the Angioma Alliance website, the only organization specifically for those affected by cavernous angioma. We have an active Community Forum...
Hi BJ: I have a telangiectasia on the brain stem. It is very small and I have had two local specialists tell me that I should not consider surgery and/or other...
Hi, My Mom was just diagnosised with Cavernous Angioma, she has seizures with it. She is now having a third medical opinion because the previous two were...
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