Cavernoma

Posted by guzzie @guzzie, Oct 28, 2016

Hi, has anyone been diagnosed with a Cavernoma? I had a bad hemorrhage in July, they originally diagnosed me as having a stroke then cerebral hemorrhage. I have byeen in and out of the hospital until mid September when finally being diagnosed with Cavernous Malformation or Cavernoma. Neurosurgeon says to not do anything that most likely it will go dormant but my Neurologist wants me to see a Vascular Cerebral Surgeon. If you have a Cavernoma what treatment have you received? My bleed was 3×3 now it is less than 1×1 and starting to show some calcification. I’m not on any meds, can only take Tylenol for headaches which I do get daily. I have severe anxiety now, every pain I automatically assume another bleed. If you have been through this, how long did it last?

@thatstrangeone

I know that I'm really late to the party but I feel like I have some helpful input on the subject at hand. I was 6 when they told me I had a cavernoma, and my mom flipped her lid because they originally thought it was a cancerous tumor. They took me to the urgent care office near me for a CT scan because I had a seizure during nap time at school, and they saw a tumor. My 6 year old self with autism had absolutely no idea what was happening and all I knew was that I was in a hospital getting pampered like crazy and that I couldnt eat much and it sucked. Because I'm fat. It was on my left frontal lobe and it was the type that got worse the longer it stayed in the brain so they surgically removed it. The only effect I've had is that due to my 6 foot 300 pound frame I've decided to play football, but I think even with the brain surgery that I'll be fine because the chance of me getting a concussion is still the same as the next guy.

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Hi, @thatstrangeone – that is an encouraging story that you have had your cavernoma surgically removed and have been doing well enough to play football. Have you noted any other aftereffects of your surgery, then?

@surfwid – how is your dizziness? How is your new prescription to help with this working for you?

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