1: Thu Feb 21, 2008 8:22am hettie
I'm 42 and have been living with this condition for 2 years now. I've had two serious bleeds necessitating a long stay in hospital; one in the brainstem and another in the cerebellum . I have so many cavernous angiomas, they could not count them all on my MRI! According to my neurologist, they don't know of anyone else who has so many. So I feel as if it's only a matter of time before another one bleeds although I've been well now for about 9 months. I have residual numbness and tingling but it is manageable.
The whole thing was scary and I still think about it every day. It seems inevitable I will have more problems in the future so I try and just live for now. I've held off joining this forum because the whole thing feels really raw but reading about other peoples' experiences is a comfort. One of the worst things about chronic illness is the isolation; the feeling that your friends and family around you don't understand how it feels and only want you to be well. Having such a large number of CAs makes me feel like a freak and I want to know why I have so many.
2: Thu Feb 21, 2008 11:49am wendy d
your not on your own, My son is 9yrs old and is like you he has,at last count around 40 cavernomas and is growing new ones I also have a 5year old waiting to be scanned as he has the krit 1 gene change, Myself I have 6 cavernomas 1 in the left pones and the rest are around the left side of my brain. It is scarry been told that you have so many and that you have new ones. We were horrifide to see our son's scans and told the neuro not to tell us how many all together just where the new ones are you have to stop counting or it takes over everthing the rest of your life .when our son became ill the surgen took out the one making him ill at the time and we asked him why he did not remove more whilst he was there he told us that he cold have removed about 95 percent of them as that was his job, but we would have lost andrew and got a shell in return it's not what you take out it's what you leave behind. So for that we are greatful to him
Take care Hettie
hope to speak again soon
3: Fri Feb 22, 2008 5:20am kirkmc
Several members have dozens of CAs, so you're not alone.
They can appear over time, but also, if you get an MRI on a more sensitive machine than previously, some might show up that didn't before. (That happened to me - the first time they found one, fairly large, and there was a tiny dot that the radiologist and neurologist said was probably an artifact, and the second time, on a better machine, the second one showed up clearly as a small CA.)
4: Sun Feb 24, 2008 4:16am ianstu
Forgive me Hettie,
Are you a member of Angioma Alliance in the UK? We have a website www.cavernoma.org.uk.
Our forum is on Saturday 7 June, 2008. Once you sign up for membership, you have a morning of talks by Mr. Neil Kitchen (National Hospital of Neurology and Neurosurgery); Professor Issam Awad, Northwestern University in America. Also speaking is Connie Lee, President, Angioma Alliance; and Mr Ian Sabin, Royal London Hospital, Whitechapel
Chair, Medical Advisory Committee, London Gamma Knife Centre. The afternoon session will be a series of workshops.
No charge for the forum or lunch. But do contact me: email@example.com.
5: Sun Feb 24, 2008 5:53pm hettie
Yes and I have registered there although I have forgotten my login details for the member's area! I plan to attend the conference in June. It would be good to get a forum going on your site for UK issues. Perhaps there is one already?
6: Sun Feb 24, 2008 6:02pm ianstu
Send an email to firstname.lastname@example.org
and I will send you the sign-in details. Put RSVP in the subject heading so I can add you to my list.
7: Thu Feb 28, 2008 9:04am Amina
Im so glad you now have a forum -
Go to the Angioma Alliance Community Hub
Go to the Angioma Alliance Forum
Go to the Angioma Alliance website