Chuck Korb shares his emotional cavernous angioma story

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.

[@lauramaeslack]

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.

[@chuckkorb3950]

Good luck, Lauraa-Mae! If you haven't already done so, the Angioma Alliance Facebook page has wonderful advice and is filled with folks you can talk to who have gone through what you are now experiencing.

[@Copper1268]

Had mine done 4 years ago you will make it

[@GasparClimaco-o6j]

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. 😢

[@HLTrds]

Just found out I had one, still recovering!!!

[@chuckkorb3950]

Good luck, Beth! If you haven't already done so, the Angioma Alliance Facebook page has wonderful advice and is filled with folks you can talk to who have gone through what you are now experiencing.

[@justineb211]

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

[@tony745]

Hello Justin, I am sorry about your situation. My son had a cavernoma it was removed, only to find out that now he has zeizures the doctor told us it is because of the surgery, and with the surgery my son lost his eyesight in both eyes 50 %, once in a while he gets blurry vision, but we had noticed that it could be related to the food, so not bread, piza. May be this is nothing new to you, I am trying to help. God Bless you.

[@warflowersociety]

@@tony745 Thank you Tony, sorry to read about your son. I have vision and other issues since it began being symptomatic. Vision worse. With 3 neuros saying no/inoperable and some of the complications if I survived, I can only imagine. It is certainly something to be monitored but I don't imagine I'd ever have it operated unless I was unable to refuse it. Still, important to be monitored.

[@chuckkorb3950]

I am so sorry you went through that, Justine. I don't look at this often, and realize your post was a year ago, but am hopeful things are better. If you haven't done so already, check out the Angioma Alliance Facebook page. It is filled with folks who have gone through what you are dealing with. Good luck!

[@OKSikhStoryTime]

HAD MY SURGERY IN 2019. Thank god everything went well.

[@vivekrajeev]

hi could you please message you e-mail id

[@MrsravenNuts]

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.

[@JOHNANDREWMOJARES]

hey thank you for sharing your experience, i just want to say I love you and I wish you good health

[@Jennifer-uv1cg]

Thank you for posting. After feeling unusual and sick for a while my doctor prescribed an MRI and we found out that I have one.

[@luiselizondo7030]

You'll get through. I have ten malformations and I had one Surgically removed ten years ago and I'm fine. Sometimes I feel my left leg kinda fell numb but other than I feel fine.

[@chuckkorb3950]

Good luck, Jennifer! If you haven't already done so, check out @t and the Angioma Alliance support group on Facebook.

[@tony745]

Thank you for sharing. We are going through this nightmare right now with my son.

[@chuckkorb3950]

Good luck! If you haven't already done so, check out Angioma.org and the Angioma Alliance support group on Facebook.

[@tony745]

@@chuckkorb3950 Thank you, so much. May The Good Lord Bless you.

[@chuckkorb3950]

@@tony745 I am so sorry you're going through this, and wish you all the best for a complete recovery for your son.

[@josettep4244]

Thank you for sharing this. 💙

[@scottleaves]

you are so inspiring. I am lucky to call you my friend.

[@debJams007]

Thank you so much!

[@merrygwolf4629]

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.

[@skybryden7736]

I have one

[@carolinekirton8585]

On Feb. 6th, 2020 I went to the ER because I woke up that morning and found that I was not able to use my left hand and I was very unsteady on my feet. I called 911. They did a CT scan, an MRI and an angiogram which showed that I had a 2 cm malformation in my brain stem and that it had bled and caused me to have a stroke and left side weakness. I could not walk, I could not bath myself or dress myself. So far the doctors are saying that surgery is not recommended due to the location of the mass. I went through rehab and I am walking again and able to self care. I too am living one day at a time. Every day I go through and don't have another bleed I am grateful to God.

[@chuckkorb3950]

Good luck @@carolinekirton8585 and @Sky Bryden! If you haven't already done so, check out @t and the Angioma Alliance support group on Facebook.

[@kristipatterson7121]

Just diagnosed two weeks ago. I feel clueless and alone.

[@JOHNANDREWMOJARES]

@@kristipatterson7121 hey man if you want we could talk

[@priscillabernal5990]

Will you be getting the vaccine?