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Postby Maga » Fri Oct 13, 2017 7:05 pm

I’ve been diagnosed on 20 sept 2017 deep frontal sx cavernoma and I am quite upset for this....
I live in Italy, Rome, and I am looking arount for a specialistic centre where to go.
I am female, 57 years old and I have had an absolutely normal life whitin now. I have two sons and suffer of headaches since i was child. I am very worrier as you all can imagine and i have read a lot of terrible thing about the possibility of brain emorragie.
One of the doc who visited me, told me that tho only therapy is the stereothassic radiotherapy .Does anyone have experience on that?
An other doc told me that this therapy is unuseful and I have only to keep this bomb in my brain.
Please answer me ...
Maga
 
Posts: 2
Joined: Fri Oct 13, 2017 6:48 pm

Re: Hi

Postby Michelle2000 » Tue Oct 17, 2017 2:20 am

Welcome, Maga. I am glad you found us, but sorry you needed to. This diagnosis can be overwhelming at first. Many people have a hard time finding a knowledgeable doctor, and it takes some time to adjust. Often people find that learning more about CM helps with their fears as well.

You can learn more in the newly diagnosed section of the Angioma Alliance website: http://www.angiomaalliance.org/pages.aspx?content=60
and there is also a helpful patient booklet at: http://angioma.org/documents/AA2016Pati ... letWeb.pdf
and a booklet for doctors at: http://www.angiomaalliance.org/pages.aspx?content=495

I don't know about the medical system in Europe, so I can't help with that. You may wish to ask on one of the Angioma Alliance Facebook groups or on one of the language forums here.

Though treatment options are limited, most people with CM do well. A lot depends on the location of the lesion, too. You didn't mention what symptoms you are having other than headache. Headaches are common in CM, but unless they are debilitating, surgery is probably not recommended because it can create more problems. Stereotactic radiosurgery is not generally used in the US, but it is more in Europe, especially for deep lesions.

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
Michelle2000
Moderator
 
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Re: Hi

Postby Connie Lee » Mon Oct 23, 2017 4:48 pm

Maga - there is also a patient group in Italy that may help you to find the right treatment center. Here is where you can find it: http://www.anacconlus.org. They also have a page on Facebook.
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
User avatar
Connie Lee
Founder, Angioma Alliance
 
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Joined: Sat Sep 25, 2010 2:41 pm
Location: Norfolk, Virginia


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