confused after appointment

Discussions of issues related to living with cavernous angiomas

confused after appointment

Postby mishell8 » Wed Jul 18, 2018 10:39 pm

Hi,

I am newly diagnosed and new to the boards. I was diagnosed after suffering a hemorrhagic
stroke and a tonic clonic seizure approximately 6 weeks ago. I had my first follow-up today. According to the doctor, since mine has "bled out" it will scar over and there is nothing else to be done (besides therapy for residual symptoms.) It can't be removed. I still have a hematoma that has gone down some and he says I am at higher risk for seizure (currently on Keppra.) I should mention it's in my left temporal lobe.

Seems like everything I have read says once one bleeds, it is more likely to bleed again, not less and that many people have them removed because of this. I am getting a second opinion but in the meantime, I am curious if anyone here is heard of what my doctor said.

Thanks.
mishell8
 
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Re: confused after appointment

Postby Michelle2000 » Mon Jul 23, 2018 2:41 am

mishell8,

Welcome. I am sorry you are dealing with this. It sounds like you need a second or third opinion. It is common for people to be diagnosed by a doctor who doesn't really understand CCM because they don't see it very often. It is frustrating when neurologists and neurosurgeons don't know CCM. I suggest you check out the Angioma Alliance website's newly diagnosed section where there is advice on finding a doctor. http://www.angiomaalliance.org/pages.aspx?content=60 There are several Centers of Excellence where you can receive good care.

You are right that research suggests strongly that once a lesion has bled it is more likely to rebleed, especially in the next 2 years. Also, hemosiderin, a blood by-product high in iron, is left behind as the blood reabsorbs. It is irritating, and can cause symptoms.

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)
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Re: confused after appointment

Postby mishell8 » Tue Jul 24, 2018 2:36 pm

Thank you, Michelle, for your reply. I have had a lot of symptoms as the blood has been reabsorbing and he did act like those couldn't be related. I also felt symptoms on a smaller scale before the stroke/seizure and he also said that was not possible. Even if I stay with Mayo (where I saw him), I am requesting another doctor. I really didn't feel heard or listened to.

I did submit for a second opinion and have another person looking at my MRIs for a third opinion. It does seem like a misunderstood area.

Thanks again.
mishell8
 
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Joined: Wed Jul 18, 2018 10:34 pm

Re: confused after appointment

Postby Connie Lee » Mon Aug 06, 2018 3:15 pm

Mishell - was this Mayo in Rochester Minnesota? Or was it another Mayo facility? I'm asking because our team in Rochester should be familiar as they are a Center of Excellence. They are also responsible for training neurologists/neurosurgeons in Jacksonville and Scottsdale. If there's a facility that needs some continuing education, we can request it so future patients don't run into this.
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.
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Connie Lee
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