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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 treatment due to its location and the risks involved. I saw a specialist at University of Michigan, Ann Arbor, MI and sent my records to a Dr. Spetzler, in Arizona (a well renowned physician in this area) and they all concurred - no surgery or other treatment unless mine should get larger. I am just to have yearly MRIs of the brain unless I have symptoms and then follow-up sooner. My main symptoms are partial left-sided facial paralysis and periodic/intermittent shooting pains in my extremities, as well as problems with my balance on/off. I would highly recommend sending your mother's records on to Dr. Spetzler and any other specialists that are well renowned in this area of brain abnormalities. All it cost me was the postage for sending my MRIs to Dr. Spetzler and I received a personal call from one of his associates with their recommendation. The MRIs were also returned to me.
Prayers for you and your mother in getting the proper medical attention.
Sandi
----- Original Message -----
From: B.J.Sent: Monday, October 20, 2003 3:25 AMSubject: [neurovascular] hi..anyone have Cavernous Angioma?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 terrible doctors, one of which left her alone
on the exam table while she was having one.
Is there anyone out there who has this? She got it as an adult, a
sudden onset. I have found a few websites but no "one on one" contact
with anyone who has it.
You can either e-mail me directly or post on the site.
thank you-
bj
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