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Thank you for sharing. I just found out from my MRI scan results yesterday. I’m 58 and never knew I had it. Your story makes me feel much less scared.

Thankyou so much for your video It really helped me before going for gama knife myself Stay blessed Hope u r doing fine

Thanks so much for sharing. You articulated my inner experiences. Had a large bleed at 22 and surgery. It was the left frontal lobe. I have good days and bad days . But there is a deep sadness it my limitations and not being able to do the simple things I want to do , with out some serious planning involved . At 22 was not a fully formed woman.

Just had mine removed from brain , thanks to god 🙏

Thank you for sharing your story Jade. I had a spinal bleed due to an undiscovered cavernoma in my spine whilst 22 weeks pregnant and 19 yrs old. Since then we have discovered we have the CCM2 gene and i had passed it to my daughter. We now both have brain cavernoma's and my daughter is due to start her genetic IVF journey next year to prevent it being given to her baby - fingers crossed and stay well

Very informative! Thank you for the information!

Very sobering. The location (left frontal) and size of your cavenoma is similar to mine and I am also presenting with similar experiences. I was hopeful of a positive prognosis for myself but after watching this, it seems that won’t be the case as you’ve really put me off the option of surgery. In truth, I’m not quite sure of the purpose of this interview. I’m sure the message, and experience, could have been conveyed without making viewers feel thoroughly depressed. A follow up would be highly appreciated. I pray Emily’s progress has improved. Thanks for the insight.

Has anyone else experienced intense negative emotional reactions, almost like a shockwave, when trying to respond to personal topics due to cavernomas in the right frontal lobe or right supramarginal gyrus? How do you cope with these reactions, and have you found any effective strategies to manage them?

Has anyone else experienced intense negative emotional reactions, almost like a shockwave, when trying to respond to personal topics due to cavernomas in the right frontal lobe or right supramarginal gyrus? How do you cope with these reactions, and have you found any effective strategies to manage them?

Has anyone else experienced intense negative emotional reactions, almost like a shockwave, when trying to respond to personal topics due to cavernomas in the right frontal lobe or right supramarginal gyrus? How do you cope with these reactions, and have you found any effective strategies to manage them?

Mere words are not enough to explain my feeling for this video made. I’m not sure what difference it makes to share this but I’m just rather in awe of how there is someone out there who can share such rare similarities. Perhaps if you and/or others read this, you’ll find solace in the relatable stories… Funny enough, my name is also Emily… I’m 28 years old, from Vancouver Island; 2 years ago I suddenly started having tonic clonic seizures. My (wonderful) neurologist managed to find a cavernoma on the left temporal lobe of my brain through my MRI; not too far away from yours. My tonic seizures are managed for now with medication though I’m becoming drug-resistant with focal (absence) seizures etc. still present… and surgery is now looking more & more like our only solution. This is the first thing I’ve seen that has been brutally relatable and the grieving of your past life; the anger; the pride in where you are mixed with the pain of the past you loved is something that has pulled on my heartstrings more than I’ve ever felt. Thank you. All my love to you and all my other souls that feel even a little bit the same… Love to you all.

You can’t know anything. Until

I was just diagnosed with a spinal cord cavernoma at C2 and c 3 16 mm by 11 mm. Believe first bleed happened in 2021 most recent bleed within the last two weeks. first bleed caused the left side of my body to go numb over a period of 6 months or so The next one started with my right arm and progressed to my right foot and numbness from my clavicle down. had issues with walking and knowing where parts of my body was. tightness around the neck rib cage and belly button. after 2 days in ICU on steroids only numbness left is in my hands. well have repeat MRIs in 30 days and then an appointment with the neurosurgeon. they already are saying the risk of surgery is great compared to how I am now. fingers crossed no more rebleeds, but at least I know what to watch for.

Hi Roxanna, same story. Just two weeks ago went to the ent for right ear tinnitus and he told me nothing to be worries but we found a cavernoma . 2015 wasn’t detected when I had an mri scan done. Thank you for sharing this will help me to try to think about it in a different way. Dani

I want a copy please, my wife has it

Thanks for this info. ❤🙏🏽

Thank you also for sharing your story, sounds like a similar experience with my first neurosurgeon. Bedside manner is/was the same 🙈

Love this

Stay strong girl . God bless you .

Proud of you Jade ❤

Thank you for sharing your story Jade. My daughter and I both have it them too.

Love this great story 😁

It’d be lovely to hear how Kay is doing now. Did she go back to college?

Thank you for sharing your story. Mr Kitchen is brilliant. I’m so glad you didn’t take that first surgeons advice.

Love this

Thank you so much very helpful

I know it's playing up when I get Random HICCUPS for no reason associated with Food or Beverage intake

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!

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

May God bless you and fully restore you

Most important for caregivers to know is the location

Semoga segera ditemukan obat untuk cavernoma, dipublikasikan ,dan diproduksi

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!

Hope you’re treatment has gone well Elliot! Thanks for your video , good luck for the future young man👍

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

Can u cure cavernoma permanently without surgery😢

How cavernoma looks like if you have many? And how will remove the cavernoma if you have more than 1?!

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

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

Thank you for sharing your experience with CMs.

Thank you so much.Sad that you are ill, hope you are better now. It must have been so stressful.

❤

Thanks for this

Inspirational to have 2 surgeries and live your life masking pain but having weakness in body. Knowing bleed potential.

Gorgeous expression of your feelings there Emily. Thank you

Articulate and delicately expressed. Thank you

Thank you for sharing; very similar to me. Seven years post 2nd surgery.

gene needs therapy