Cavernous Angioma and Children

[stevewhi1972]

Hi, I have a cavernous angioma in the right sylvan fissure. My Gp at neuro seems ignorant of the fact I have lots of questions, at least it will be dealt with soon I hope.

[Rdoran63]

We have been dealing with CVM's with our daughter for five years. It all started with a seizure when she was six. She ended up having a larger bleed in the pons of her brain stem. She had brain stem surgery on 8/15/2010 and spent 8 weeks in a rehab hospital for children. She had to learn how to walk, talk, eat, and still has many stroke like problems. We just had a MRI that showed another CVM in the frontal lobe that needs to come out. We pray for a cure.

[superzambell]

i was diagnosed with 14 mm cav. angioma on my right temporal lobe. my was an incidental finding . i have no synthoms nore pain . the doctor told me that its close to the surface and the fact that i am righty its even better. next monday i am going to another special visit and we are going to talk about a potential operation...i am really scared....i was wonder if enybody out there had one removed in this area, and i wanted to know if they were ok? i am 32 by the way

[pdmhensley]

just got done watching the video this is how my little girl died just like blue haven sent home twice and was told it wasnt life threating i lost her a few days laters thank you for this video

[theholypope]

Having a girlfriend I deeply love, that has to go through such an operation next week - this video is HELL ON EARTH!

HATE the chilling music.

[mamoderawat]

I was diagnosed with one aged 24. Can someone tell me is surgery with no further neurological damage and realistic hope? Do people recover full and no longer suffer symptoms after surgery. Basically what are the odd?

[GDTF88]

my girlfriend had two cavernomas. one was removed one year ago.

she is a normal girl, there were no bad effects from the surgery. she recently had two seizures, on the same day, but she had forgotten to take the meds.

[zakimimula]

I was diagnosed at 17, by 21 I suffered a stroke and had surgery. The angioma was in my visual cortex and surgery relieved some of the blindness but not all. Assistance with rehabilitation after surgery is a must; its a very difficult time. I'm now 41, and aside from being partially blind I sufferred no other effects and no regrowth. I count myself lucky.

[xbossx87]

i want to thank for this video too... i too was diagnosed with one on the left lobe temporal of my brain... went through surgery sucessfuly but i have developed post operations medical conditions like eplilepsy...

[ContagiousFun]

I'm 19, I have a total of 12 cavernous angiomas. I've already been to the hospital for the one that's in my occipital lobe. They won't operate because it was only minor bleeding and posed no threat. Though I now have to get an MRI done every 1 to 2 years for the rest of my life. Mine are hereditary, my sister has them as well and has already had surgery.

[california1450]

My daughter and my son at age 18 had surgery to remove cavernous angiomas! This is not always the case. I am their mother and also have multiple angiomas, but have never had surgery or complications.

Although your sister had surgery that does not mean that you will have to have surgery in your lifetime.

Just take care of yourself and live your life to the fullest! God Bless

[SoulsForPaper]

I can't get any serious help with my hemorrhaging cavernous angioma because no one takes them seriously. I'm 26.

[mamoderawat]

I feel the same about the team dealing with me. Lol, keep delaying and postponing appointments, Test results getting lost etc, almost like they will only take it serious once it causes serious damage. Thou I must say, the only person who has gone out of his way is Mr Andrew McEvoy, he was not assigned my case, yet I emailed him and he not only responded but also spoke the team that was supposed to be handling my case and made recommendations to them. A very top guy!!!

[puppyface1000]

I would like to say thank you for the vidio, living with 2 children one, who had surgery 2x already and the other on her way, one does not understand what theese children go through until you have to face them and listen carefully to all their concerns and cares because they do need a different kind of love and understanding and as a parent I wish we could have more information to care for them so they do not have to face the surgerys. A prayer for a cure.

[skderrig]

This video is a must see for everyone who works with children living with cavernous angiomas! Thank you for this wonderful information.

[ianstu100]

An excellent video. This short film should be a must-see for everyone.

[wdgd94]

thank you angioma alliance for putting us on the map, not oly in the usa but in the uk and all over the world. Now we have a voice.

[beckyinaz]

Thank you Angioma Alliance for putting this informative and wonderful video together!