Thank you also for sharing your story, sounds like a similar experience with my first neurosurgeon. Bedside manner is/was the same 🙈
@skybryden773619 сағат бұрын
Love this
@Xyxfhkuyt2 күн бұрын
Stay strong girl . God bless you .
@loopyluchead4 күн бұрын
Proud of you Jade ❤
@emaanlovescrochet13564 күн бұрын
Thank you for sharing your story Jade. My daughter and I both have it them too.
@adelaidehayley63604 күн бұрын
Love this great story 😁
@roxannadixon50964 күн бұрын
Thank you.
@kateshephard49205 күн бұрын
It’d be lovely to hear how Kay is doing now. Did she go back to college?
@kateshephard49205 күн бұрын
Thank you for sharing your story. Mr Kitchen is brilliant. I’m so glad you didn’t take that first surgeons advice.
@roxannadixon50964 күн бұрын
Thank you for your comment.
@adelaidehayley63605 күн бұрын
Love this
@lukmannakib74977 күн бұрын
Thank you so much very helpful
@MichaelBone-hj7sr23 күн бұрын
I know it's playing up when I get Random HICCUPS for no reason associated with Food or Beverage intake
@MichaelBone-hj7sr24 күн бұрын
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!
@MichaelBone-hj7sr24 күн бұрын
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.
@MichaelBone-hj7sr24 күн бұрын
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
@MichaelBone-hj7sr24 күн бұрын
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.
@MichaelBone-hj7sr24 күн бұрын
Yes I'm channelling Benny Hill.
@MichaelBone-hj7sr24 күн бұрын
And LIKING MYSELF 👍
@pauljohnson7770Ай бұрын
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
@linaf3092Ай бұрын
May God bless you and fully restore you
@pauljohnson7770Ай бұрын
Most important for caregivers to know is the location
@k-drone123Ай бұрын
Semoga segera ditemukan obat untuk cavernoma, dipublikasikan ,dan diproduksi
@ScorpionTrinity2 ай бұрын
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.
@somo64622 ай бұрын
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
@yasmin76612 ай бұрын
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!
@michaelfozzard41224 ай бұрын
Hope you’re treatment has gone well Elliot! Thanks for your video , good luck for the future young man👍
@michaelfozzard41224 ай бұрын
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
@user-ko1yx4fk5t5 ай бұрын
Can u cure cavernoma permanently without surgery😢
@user-ko1yx4fk5t5 ай бұрын
How cavernoma looks like if you have many? And how will remove the cavernoma if you have more than 1?!
@heidiwhite14215 ай бұрын
when's the next cavernoma Alliance video meeting (zoom call only had 1 and forgot how and when to attend :) my symptoms are unbearable x
@gazza41967 ай бұрын
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
@MotifMusicStudios7 ай бұрын
Thank you for sharing your experience with CMs.
@moogdome25628 ай бұрын
Thank you so much.Sad that you are ill, hope you are better now. It must have been so stressful.
@adelaidehayley63608 ай бұрын
❤
@user-dk8wg3xm9e10 ай бұрын
Thanks for this
@shayeraalam587710 ай бұрын
Inspirational to have 2 surgeries and live your life masking pain but having weakness in body. Knowing bleed potential.
@AlexFord-vw1fi10 ай бұрын
Gorgeous expression of your feelings there Emily. Thank you
@AlexFord-vw1fi10 ай бұрын
Articulate and delicately expressed. Thank you
@jonlarcombe322610 ай бұрын
Thank you for sharing; very similar to me. Seven years post 2nd surgery.
@gregoryallen000110 ай бұрын
gene needs therapy
@Aleakwe10 ай бұрын
💛 Obulu (thank you) for speaking shared experiences.
@Aleakwe10 ай бұрын
💛This really helps me, Obulu (thank you)
@VERANISNEUROSURGERY Жыл бұрын
Thank you for the knowledge you share , it was helpful for our practise
@esthercuevas4176 Жыл бұрын
Our God is greater and He is in control❤️
@Mariaolbelification Жыл бұрын
My husband also have cavernoma, it cause him seizures and catatonia, we are suffering 😢
@Mariaolbelification Жыл бұрын
My husband also have cavernoma, it cause him seizures and catatonia, we are suffering 😢
@Supercharger1000 Жыл бұрын
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.
@nerissaduque1725 Жыл бұрын
How to cure Covernoma illness.without surgery.. surgery is very risky.. my Son have Covernoma
@nerissaduque1725 Жыл бұрын
my Son have also Covernoma..how to recover this kind of illness..hope you can give me information how to avoid
@jamesfield1116 Жыл бұрын
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. 😅
@DeniseMcknight Жыл бұрын
I just watched this, and it was so informative! Thank you
@stanislavastartseva9639 Жыл бұрын
Thank you so much, great video!
@achiradissanayake3580 Жыл бұрын
What's her email?
@eugenelevin7892 Жыл бұрын
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.
@Mmk422 Жыл бұрын
Can a cavernoma come back after complete resection if you have a sporadic case? Mine was completely resected in 2011 from my frontal left lobe when I was 15. I was cleared by my surgeon from needing any more MRIs or follow ups when I was 18 in 2014. I feel fine and have no symptoms but am a little worried about another one forming if that’s even possible?