Cavernoma Alliance UK (also known as CAUK) is a charity created for people affected by cavernoma - otherwise known as cerebral cavernous malformation (CCM); cavernous haemangioma; or cavernous angioma.
Our mission is to improve the quality of life for all those affected and create greater awareness of the condition.
We offer:
- up-to-date information about the condition - free events nationally with talks by leading medical experts - a supportive community network - free membership
For more informaiton, please visit our website at cavernoma.org.uk/ or our facebook page at facebook.com/Cavernoma.Alliance.UK
I don't have a CAVERNOMA STORY Yet. And all the Relief & Validation that arrives with a Clear Diagnosis. Not to mention Treatment Options & a sense belonging to a Community Society or Alliance Group or any ENTITY of Empathic Gathering of Kindred Spirits I have a SPECULATIVE Story though. It's like a Horror Story. A Steven King Movie. Even a Spy Agency couldn't manifest such suffering. But then AGAIN maybe they could & DID & THEY chose Me to DO IT to. Lucky Me in the United States of Australia eh!
I'll tell You & the Spy Agency what I've learned from my Horrendous Torturous Travails. {Pain Hurts & Fear makes You Scared} That's it. Nothing New Under the Sun regarding The Human Condition® and the Propensity for Violence Variously theirin.
I DO KNOW that Ice Pick Headaches are Derived from the same Root Cause as Why my Brain tricked me into thinking ALL my Teeth were Getting Infected like Domino's. Not that DOMINOS make anything Derivative of a Naturally occurring Pizza with Soul. More akin to Formulaic Hot Glup for easily coerced Millennials. But that's me being Cynical in this Hot Messianic Mess of a World with MEATYDATA Toppings & Heat triggered Myoclonic Seizures & Grey~Outs & Blackouts. HILARIOUS
Maybe I should have Gratuitous Sex at "The Harem" across the Road? That'd be a Riot for the Girls with Intriguing names. Me with No Teeth & a Rollator looking like Grandpa. Intriguingly, That Sexiful Establishment was Where I had my First Encounter. My first encounter with a Scary NEUROLOGICAL EVENT in a Hot Bath in 2007. The Name's BONE, Michael Bone. Cooked & Seared in a Post Coital Hot Tub with an Exacerbated Brainhead as a Extra. (Not Funny at the time). I couldn't see or talk or Think properly and my Head hurt & my Tongue was Tingling & Numb & my legs Buckled as I got out of the Water. The Poor girl "CAPRICÖRNIA" was so worried for me. Then again It could have been "Perrplexxia" or "Daphne St Claire". Been a while. Then I sat in a child's swing in the Park and then my Head came Good. (Sorry it's Trüe) A very Tricky Day it WAS. Until I had A HOT BATH at home without any company And IT 🔥🧠💥 HAPPENED AGAIN.
As a retired neuropsychologist who a first big bleed from a cavernoma in the the left cerebellum when 71 I’m on the personal medical side. Having a well organized approach and mindfulness are important. After that some at least mostly nonjudgmental friends and informal support can help. I also had never seen a cavnoma patient in decades of work with older adults as the majority are younger people. In that regard this is a most devastating diagnosis. Therapy therefore needs to be aware these patients are dealing with ongoing loses. Friends and family will be dealing with loss and may have to make hard decisions. Letting of all shoulds finding meaning can be done but meaning needs to be defined by the individual. Usually also means letting go of expectations. In future presentations may be helpful to better define what a cavernoma is I.e., small cluster of capillaries. You seem like a sensitive young professional. Keep up the good work
Thank you for this information and conversation. It was very helpful and gave me my first positive lead for health related to CCM and what I can do about it.
WOW, I'm 32 and have a cavernoma in my right temporal lobe which bled at an unknown time. Never (!!) heard of anyone with the same diagnosis including epilepsy and focal seizures - so interesting to hear Emily's story! Thank you so much it gives me hope. All the best, Emily
Thank you for this. And thank you, Emily. Just keep going. I had my cavernoma removed through laser when I was 28. My daughter was 3 yrs old. I'm 49 now and from the Philippines. Thanks everyone!
I had a eye melanoma treat with gamma knife at Sheffield teaching hospital.The staff there were really the best I could have asked for , I was also worried about the frame fitting and injections around my eye before the frame fitting,but have to say that out of ten I had given it in my own mind it was all more like a two.I know it’s not a nice procedure but not as bad as what I thought it was going to be So thanks to all the staff you were all very professional and caring
Just came across your video what a beautiful lady you are just by watching this short video of you the vibes I got from it are I can tell your a caring helpful basically you would do out for anyone I wish you all the best in the coming future n have a lovely Christmas n all the best for the new year my lovely xxxxxx
Air flight may be safe but does sexual intercourse affect more bleed in male? There is currently a small bleed and I’ve been discharge from hospital for wait and monitor currently. I feel ok and there are no disability presently. There maybe a bleed and it has bled twice now.
This has been very informative! I had a question about combat sports and cavernomas. I have a hypothalamic Cavernoma that has bled and want to know your thoughts on this situation? One surgeon I've seen has said flat out no and one has said there's no evidence to say it'll become worse from head trauma...but I'm still not sure. 😅
Hi. I was very interested to hear your story. I had a bleed between T3 and T4 and they discovered it was caused by a cavernoma. The bleed caused me to have a very weak left leg and pins and needles in my right leg, also known as Brown Sequard Syndrome. My strength has returned somewhat in my left leg after several months. They are planning to remove the cavernoma to avoid a bleed in the future, which could paralyze me. I commend you for the strength you have shown. keep the spirits up.
