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.
Hello! We have very similar stories as well. I’m from Brazil, but living in France since years. I have been diagnosed with a cavernous malformation located on my left temporal lobe after a seizure. I couldn’t feel the entire right side of my body and fell on the ground. A couple months after, I started having temporal lobe epilepsy, absence as well. I will see my neurologist next month to change my anti seizure medicine as I’m having memory problems and he believes this is due to small seizures. This disease changed my life completely. Today I got the news that my cavernoma increased 5mm in size in one year. I came here searching for answers as I don’t know what this change could mean. Reading your comment and watching this video made me feel less lonely.
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.
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!
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.
Hello! We have very similar stories as well.
I’m from Brazil, but living in France since years. I have been diagnosed with a cavernous malformation located on my left temporal lobe after a seizure. I couldn’t feel the entire right side of my body and fell on the ground. A couple months after, I started having temporal lobe epilepsy, absence as well. I will see my neurologist next month to change my anti seizure medicine as I’m having memory problems and he believes this is due to small seizures.
This disease changed my life completely. Today I got the news that my cavernoma increased 5mm in size in one year. I came here searching for answers as I don’t know what this change could mean.
Reading your comment and watching this video made me feel less lonely.
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.
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
Gorgeous expression of your feelings there Emily. Thank you
💛 Obulu (thank you) for speaking shared experiences.
Stay strong girl . God bless you .
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!
Love this
May God bless you and fully restore you
❤