Looking for answers.

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Looking for answers.

Postby Kfarns » Fri Jul 07, 2017 2:31 pm

Hi my name is Kenny and about 2 years ago I had some severe head pain and found out that I had a cavernous angioma that was bleeding. Long story short the bleeding cleared up and the neurologist said it was an incidental finding. I just had a yearly follow up mri which revealed growth in the angioma from 7mm to 1 cm. I plan on seeing a neurosurgeon to get more info but wanted to get some advice/answers on this forum about what to do and how serious this really is.

Thanks
Kfarns
 
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Re: Looking for answers.

Postby Michelle2000 » Mon Jul 10, 2017 1:43 am

Welcome, Kenny. I'm glad you found us, but sorry you are having problems. The good news is that it is extremely rare that CM causes death, but it can cause a number of problems depending on where lesions are located, and whether they bleed.

Many people are told their CM is an incidental finding, not causing whatever symptoms they are experiencing. (Most people on these forums have a different opinion, but aren't doctors.) It is important to find a doctor who is knowledgeable about CM. There are currently two centers of excellence in the US - the University of Chicago, and the University of New Mexico- with more expected to be certified soon. There are other neurologists and neurosurgeons around who are also very good. There are some threads asking for the names of doctors in various parts of the country. (Angioma Alliance gives this advice http://www.angiomaalliance.org/pages.as ... 330&id=274) I know it is a huge relief to find a doctor who knows what he or she is talking about.

You can find more information and a list of questions to ask your doctor here: http://www.angiomaalliance.org/pages.aspx?content=60

Best wishes,

Michelle
16 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH, MIL, & BIL with multiples in brain and spine
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Re: Looking for answers.

Postby Kfarns » Wed Jul 12, 2017 4:34 am

Thanks for the response. The biggest thing that concerns me is that this is growing and I have had symptoms. So is medical just gonna wait until I have a seizure before taking this seriously? Or is that the only option here anyway...to just wait and monitor it.
Kfarns
 
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Joined: Fri Jul 07, 2017 2:24 pm

Re: Looking for answers.

Postby Michelle2000 » Mon Jul 17, 2017 6:24 pm

Kenny,

Well, wait and see is often the best course, depending on location and severity of symptoms. There are some promising medications but they aren't ready for clinical trials yet. I understand your frustration. Many people (probably most) recover fully or nearly fully following a bleed. Surgery is the only treatment, and some people do well following surgery and others do not. Even for those who have a good result the recovery time can be quite long. Brains take a very long time to heal. There are some locations in the brain that are considered "eloquent" and surgery is too risky. Where is your CM? CMs in the lower part of the brain rarely cause seizures.
Hopefully you will get the answers you seek from the NS. There is a list of questions to ask here: http://www.angiomaalliance.org/pages.as ... t=63&id=51

Best wishes,

Michelle
16 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH, MIL, & BIL with multiples in brain and spine
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