Chuck Korb, frisbee virtuoso and co-founder of Saber Seminar which benefits Angioma Alliance, shares the story of his cavernous angioma (cavernous malformation, cavernoma) experience.
Just found out I have one.. very scary. Scariest week of my life not knowing if I would make it home to my 3 kids. 💕 tears in my eyes watching this. I wish you all strength whoever else is going through this.
I just found you. I way diagnosed in seconds grade. I'm 46 now. Mine is also on my right but in the back and on my optical nerve. I smoke and drink energy drinks to keep my blood thin. Diagnosed terminal in 1999. The headaches have increased in intensity since I got COVID. Wow. I can't believe I found you. It feels really lonely.
I just found out too and they are giving me seizures no one has ever heard of. Doctor is throwing meds at me trying to see which ones work. smh Thank you for bringing this to light.
Where do I find out about the DNA trial? I have my raw DNA data file I can upload or email. Right pre-frontal lobe cavernous malformation. Symptomatic. Also, what is the medication to prevent bleeds and does it also prevent it growing? I've not heard of anyone mention this. When it was found, I had 3 separate neurosurgeons state due to location it was inoperable. Then, magically, years later, one said yes, only to find they'd only wrote a paper about it and shortly after my chickening out that neurosurgeon was no longer at that facility. The one that referred me to him, then after stating, no surgery. The symptoms of it are awful, sometimes quite severe, and last few weeks and over last month have increased to near daily. 2 members of my family have passed away from stroke (one in 40s and one about 80) and were symptomatic prior, though unconfirmed if they also had one or where the location was. This is such a frustrating disorder, I'm told to go to ER when I have symptoms and they treat me for a headache and billing considers that a non-emergency. I'm not thrilled as it is with the hospital near me and going now that I'm having symptoms again, is frustrating. Blurred vision to where I can barely see, that does let up is not normal it's terrifying, not as terrifying as what's to come and how different I feel as I get older with it and other health issues. Worse, I still feel like I'm having to explain to doctors/staff what a cavernous malformation/angioma/hemangioma) is. Not to mention the stigma and complete ignorance from "friends" and others, including medical professionals. It's 2020
Plsss have a cure for this. And also why cavernoma recur after excision? Enlighten us about this? Perhaps it is a tumor form by blood or vessel? What so ever. 😢
