New to This... Need help.

Discussions of issues related to living with cavernous angiomas

New to This... Need help.

Postby DS0325 » Mon Jan 14, 2019 7:12 pm

I was diagnosed with an intraosseous hemangioma (located in my brainstem) in 2014 due to the onset of constant headaches. My earliest MRI is from 2011 (a work-related injury) and from then until 2015 there is growth. My most recent MRI only shows minimal growth (10.7 to 11.1) so my new neurologist doesn’t consider it to have grown at all.
My concern are new ‘side effects’ I’ve developed. I’m having trouble with cognitive issues. I have trouble with memory issues, speech, spelling. It’s like waking up with a different learning disability every day. There are days when I wake up and I can’t write or spell my own name. There are days when I can’t remember a specific name of something or word for something that I’ve known my whole life. It’s starting to take a toll on my work and I’m afraid I’m going to lose my job. I can’t function in my day-to-day life. I’m in constant pain from my headaches/head pains.
Is this common?
I’ve just begun treating for the headaches/head pains with a new neurologist because my PCP just retired and I wasn’t taking my diagnosis seriously. And to be honest, I’m not sure if my new neurologist will think that any of these things are related in anyway because I don’t think she has any experience in treating hemangiomas and everything associated with them. At my first/only appointment with her, she said that she doesn’t see how I can suddenly start having severe headaches from something that’s grown so minimally and that maybe I just have a headache disorder.
The headaches started in 2014 and just have gotten progressively worse. I’m on three medications that are commonly used to treat headaches and migraines and they do nothing to treat the pain.
I’m swimming in uncharted waters so I would appreciate any advice, tips, help.
*Living with an intraosseous hemangioma in my brain stem*
DS0325
 
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Re: New to This... Need help.

Postby Michelle2000 » Wed Jan 23, 2019 4:14 am

Welcome, I'm sorry you are having new symptoms develop. As you've discovered, many neurologists don't understand CM. Are you able to travel to a Center of Excellence for a second opinion? http://angioma.org/pages.aspx?content=482&id=394

Best wishes,

Michelle
18 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: New to This... Need help.

Postby DS0325 » Wed Jan 23, 2019 1:29 pm

I just realized I already posted a topic requesting help/advice/tips (honestly I don't remember the first one at all...part of the side effects, I suppose). I'm currently looking into the neurologists in the link you provided. I'm located in Pittsburgh, PA so I'm at least 10+ hours from any of them. I'm going to have to research and contact the best match for my case since it's going to be a hefty drive just to be seen by one of these doctors.
*Living with an intraosseous hemangioma in my brain stem*
DS0325
 
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Re: New to This... Need help.

Postby Michelle2000 » Thu Jan 24, 2019 12:15 am

One possible explanation is that the left over blood product, hemosiderin (mostly iron and irritating to tissue), from previous bleed could be causing trouble. People with CM often have symptoms that aren't caused by new bleeds. Hemosiderin, unfortunately, doesn't go away.
18 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: New to This... Need help.

Postby DS0325 » Thu Jan 31, 2019 4:31 pm

Do you have any experience with this material not being detected on MRIs?
*Living with an intraosseous hemangioma in my brain stem*
DS0325
 
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Re: New to This... Need help.

Postby Connie Lee » Sun Feb 03, 2019 3:40 pm

Hi and welcome,
Your intraosseus hemangioma is somewhat different than the brainstem lesions of others on this forum in that yours is in the bone rather than in the soft tissue of the brain. I'm not sure that the experiences you read about here are comparable. The specialists would not be the same as I believe the treatment options are very different.

I would contact the craniofacial surgery departments at UPMC and Children's Hospital in Pittsburgh to see if they can offer you a suggestion for a craniofacial surgeon who sees adults.
Connie Lee
President and CEO, Angioma Alliance
On this journey since 2000, when my infant daughter was diagnosed.
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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