Familial CMs, new bleed, and Netflix show

Discussions of issues related to living with cavernous angiomas

Familial CMs, new bleed, and Netflix show

Postby limonada10 » Wed Jan 16, 2019 12:11 am

Hi all,

I've known about this forum for a while, but after I had surgery to remove a cavernoma from the left side of my cerebellum 15 years ago, I wanted to think about this disorder as little as possible (I was 18 years old and I don't think I fully processed what happened to me back then).

Fast forward to now, I recently had another bleed in a cavernoma in the left cerebellopontine angle that seems to have appeared and grown to 2cm in the last 5 years. I suddenly had double vision, my left ear got clogged, and felt lightheaded, and I probably gave myself a panic attack that raised my blood pressure. Three weeks later I feel much better, double vision is gone but I still have nystagmus in the left eye, and my left ear is less clogged. The neurosurgeon at USC, Dr. Jonahan Russin, said I could take it out or wait and see. I'm getting a second opinion but for now, I'm leaning towards waiting. I went back to work yesterday and it was a little hard not to get dizzy when moving my head around.

The neurosurgeon mentioned anecdotal evidence of Metropolol helping with CMs, but made no promises. I know in other threads people have talked about other beta blockers. Has anyone used Metropolol?

I just learned turmeric tea has blood thinning properties. Do people think it's safe or not?

I would very much like to get involved and meet other people if there is a support group in Los Angeles.

Finally, in a crazy twist in my story, I'm a writers' assistant on a new Netflix show (working title is Away); and I pitched to my boss that one of the main characters has familial CM disorder and they're using it. This happened before my last bleed and while it's been hard having to do so much research, I'm excited for the potential this could have in raising awareness for this condition.

Thank you for the help and for all the support this board offers!
Best,
Paola
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Re: Familial CMs, new bleed, and Netflix show

Postby Michelle2000 » Wed Jan 23, 2019 4:19 am

Welcome, Paola,
I'm sorry you are having new trouble, but glad many of your symptoms have resolved.

How awesome that you were able to get CM written into your show!

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: Familial CMs, new bleed, and Netflix show

Postby Elizabeth » Fri Feb 15, 2019 4:38 pm

Welcome,


I'm very late to the party, sorry! Hopefully you are feeling even better now.

There is an LA group that gets together occasionally. If you reach out to Stephanie Alband (salband@angioma.org) she can add you to the list so that you can join in next time. I don't ever watch tv, but I'll have to look out for the new show...that's awesome to help raise awareness.

Take care, be in touch!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: Familial CMs, new bleed, and Netflix show

Postby GeraldNus » Mon Feb 18, 2019 12:21 pm

Big congrats on the Netflix show, Paola! That's so exciting. Please update us when the show is about to air. I don't want to miss it.
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Re: Familial CMs, new bleed, and Netflix show

Postby limonada10 » Tue Feb 19, 2019 3:41 am

Hi Elizabeth,

Thank you! Yes, feeling much better now, trying to get back to normal life as I make a decision whether to have surgery or not. Hope you are well as well!

Thanks for the info, I will email Stephanie right now.

I will post here and on Fb when the show is announced. I'm very excited and really hope we can spread the word, maybe get more people interested in research, who knows?

Best,
Paola
limonada10
 
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Joined: Tue Jan 15, 2019 11:33 pm

Re: Familial CMs, new bleed, and Netflix show

Postby Elizabeth » Wed Feb 20, 2019 1:59 am

Looking forward to meeting you at our next LA gathering!!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Posts: 1685
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles


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