Cavernoma Alliance UK
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Djohnson2829

Hello my name is Derek I was diagnosed in June of 08 with cavernomas in the pons area of the brain stem and it’s genetic my brother and mother have the same condition. Recently I have experienced a major bleed for the first time and it has changed my life I really do not know what to do, my right side is weak my balance is completely off my hearing in my right ear is off my eyes are blurry and swallowing seems to be hard at times, reading the post has helped me.

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I have exactly the same symptoms following a bleed from the same area. After 4 months I am regaining my strength in my right side, and a decrease in all the other symptoms

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Ok that is good to know my head and right eye hurts a lot and my balance is still off but it is good to know others like yourself I thank you

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Hello.

Sorry to read of your bleed and that you are struggling. If you would like to, you can become a member of CAUK (for free) and this will give you access to a secret and protected Facebook discussion group where our members (old and new) share stories and experiences, ask questions and support and encourage each other. This might be of benefit to you - we also host support groups for our members throughout England and Scotland.. where are you based?

if you are interested and feel That hearing other peoples’ Experiences that are similar to yours might help then please click ‘Become a Member’ when you follow this link to our website;

cavernoma.org.uk/

Take care and get plenty rest.

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Hello Derek. My 1st post here as well. I was diagnosed with a cavernoma in November. I had been having symptoms of right side numbness, nausea, vomiting as i fainted once. My left eye became bloodshot and i was suffering severe headaches since June. Being a "mans man" i shied away from the doctor thinking it would only keep me out of work. I thought i had carpal tunnel as I'm an automotive technician by trade. I was also very active physically (former college basketball player). I was 1st diagnosed in July with an ear infection, which led to a CT scan. That was thought to be a meningioma (benign tumour). I was referred to a neurologist who diagnosed a cavernoma after an MRI and Cerebral Arteriogram.

I can tell you this... stay positive! Ive changed many things in my life from that point. It's very difficult to adjust to. I haven't played basketball since July after at least 3x a week. I only work on mostly electrical and driveability problems on cars as opposed to heavy engine and transmission work i used to do. I literally make half the money i was making the last 10 years. I get fatigued on a long stair case nowadays. But I'm still alive and that's what counts. I wss feeling down this morning, thinking of all the problems i have and how much tougher life has been but just joining here today makes it a lil better. Having good family and friends behind you will help greatly. I wish you and all of us the best.

I have noticed an over all improvement since the bleed stopped. My eye is no longer bloodshot and I'd estimate I'm 80% of myself. Still have low energy, quick change of direction problems, mood swings, momentary numbness. That's when i focus on staying calm, and waiting it out. I wish you the best my brother! You will find your way.

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You to thank you for that I appreciate that it helps I had to completley stop working and apply for disability I try every morning to workout and never give up I played simi pro basketball my son was highly recruited and it pains me as well not to do what I used to do, I recently lost everything as well but my faith keeps me strong so your words really helped me god bless

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No problem at all. Going through this has definitely made me feel more convicted in my faith as well. While it hasn't been easy by any means I'm finding it easier to get used to my limitations now. Giving up basketball was really tough, I do understand how you feel there. Just keep the faith and keep pushing sir! Best wishes.

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You to sir thank you have a blessed day and enjoy your holiday

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Hi Derek....my cavernoma rezulted in a pons/brain stem bleed. It caused loads of issue's at the time, but 2 years on I'm practically back to normal. I jut get dizzy laying down and turning to my right side in bed is like being on a roller coaster lol. These are such small things to manage when I consider what could have happened. I hope things improve for you asap. Good luck!

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Thank you have a blessed day

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