Cavernous in left frontal lobe

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Cavernous in left frontal lobe

Postby Weaver100 » Thu Dec 21, 2017 6:19 pm

Hi everyone,
I was diagnosed with a cavernoma with associated DVA and hemosiderin ring in late October. This was because of severe headaches on the right side. before my visit to the neuro, nov 15, the headaches had become totally debilitating and affected the whole head, 24-7. The neurosurgeon put me on Divalproex(helped immensely) and started the process for a ct-angio which was completed on 5 December. This confirmed the initial diagnosis. Now we are waiting for the neurosurgeon appt, insurance has approved the referral to ucsf. Anybody have any thoughts, should I also be looking at a second opinion from Stanford since I live within a couple of hundred miles?
This has come as a surprise, I am 59 years old, female and healthy!
Weaver100
 
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Re: Cavernous in left frontal lobe

Postby Michelle2000 » Thu Dec 28, 2017 6:44 pm

Welcome, I'm glad you found us but sorry you have the need for us!

If you haven't already, check out all the good information for newly diagnoses people on the Angioma Alliance website: http://www.angiomaalliance.org/pages.aspx?content=60

Second, third, fourth opinions are good things. Most doctors don't have experience with CM, so it may take awhile to find one. There are others who have had experience at those hospitals. Click on the search icon at the top right of the page. You can type in Stanford or UCSF and see many posts to see what others have said about them.

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
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Re: Cavernous in left frontal lobe

Postby scuba_kiwi » Sat Jan 06, 2018 12:05 am

Weaver100 & Michelle2000,
I was also just diagnosed this week with a Intracranial Hemorhage (ICM) and CCM in my left frontal cortex. I agree with Michelle2000 - get second opinons and find someone who knows about doing neurosurgical brain mapping (awake surgery) and CCMs. Many neurosurgeons will say they know about this - but push for finding those who do THAT procedure the most. IE a vascular neursurgeon WITH brain mapping experience. I'm currently at Duke University - I would love to be where you are! My husband is a neurologist who trained at UCSF - use the links to find guys there. Farther south there's Dr. Martin at UCLA. Your bleed looks bigger than mine and if it has a ring - you must do this. My surgery is next Weds. - they want to get in there while the blood is still pushing brain away, giving a good path for them.
One other word of warning - have an advocate with you on the stroke service in the hospital, and make sure they understand this is different from a usual stroke. I got a horrid headache, and the interns/residents there only played their ischemic stroke book - they only offered tylenol for 4 days. (They also forgot to put me on the food service, and didn't notice for 2 days.) By day 3 I was in so much pain I wanted to die. I would have never agreed to go back to Duke, but for an attending neurologist that came to the rescue - knew this wasn't a "headache" but caused by the CCM and prescribed some serious drugs to help break the pain. I swear she's an angel - I'm home now waiting for the big day.
scuba_kiwi
 
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