Cerebral Cavernous Hemoagioma

[pastorderik]

  Hi,
My name is Derik and my daighter Abbi is a twin. She was flown to Arkansas Children's Hospital one day after we had taken her home because she quit breathing. What was thought to be a heart defect was in fact group B strep. (even though the mother was clear of group b)
  She recovered in a week and we took her home very soon after that.
We have been back and forth from Little Rock because they wanted to see how she was developing and they ordered an MRI. It showed a very small lesion on the left that they said probably wouldn't affect her development because of the small size and location. They also found a small dot which they are assuming is cerebral cavernous hemoagioma. I have been trying to do some research on this.
  Is this something that can be fixed? The exact report says "Left Cerebellum probably cavernous hemoagioma." She is now 6 months old and we are getting another MRI in 6 months. woopie...
They said something about she probably shouldn't ride roller coasters or things like that...
She is on par with her twin sister who had no sickness or complications and they are both developing equally. Any extra info or help would be greatly appreciated. Thanks for all you do.
-Derik

[Billsdaughter]

Hello,
I was about to mention the angioalliance website too, then I saw beckyinaz comment appear. I have a relative, a lady about 40 years old who has a hemangioma in the brainstem, had an episode of numbness and balance problems a few years ago that slowly cleared up after a few months, that is when they found it. Several doctors told her it was stress before she found one that took her seriously. She has regular scans now and has been fine, no surgery at this point as hers is in a delicate area to operate on. From the website I gather they may operate if it's in an easy area to reach and the person is having repeated symptoms. They say there have been great advances in microsurgery and the Barrow Neurosurgical Institute in Arizona was recommended in their forum. She has been a very active athletic person all her life. Her doctor did not tell her to avoid rollercoasters etc. but it does say that at the website.

[beckyinaz]

Hi,
I just wanted to let you know that there is a website www.angiomaalliance.org it is a website dedicated to cavernous malformations.  (I had mine surgically removed this past Dec.) There is a forum and I know that there are several people who have kids on it.  If she is not having symptoms, they probably won't do anything but watch and see.  The drs said I had it since birth and that is appears with symptoms anywhere bettween 20-40 (I was 30)  Since I didn't know about mine until later, I still road rollercoasters and was a "normal" kid.
Good luck and if I can answer anymore ?s for you please let me know.
BTW-I am not a dr!