3mm cavernoma on mid brain

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3mm cavernoma on mid brain

Postby somy » Sat Nov 24, 2018 10:23 pm

i am in Canada, Vancouver, on October 25th 2018, i was coming back from my work, once i got to the car, i felt something is not right with my vision, i could see everything double,vertically, got home and thought i should rest , the next morning i woke up and felt i don't have balance and my vision getting worse. no need to say that i have two small kids 2 and 4 that drain lots of energy out of me everyday . working full time and have a very busy life.

i went to my doctor and she told me i need to see a neurologist , the same night i start having numbness on my right side,we asked my mom to take care of kids and we headed to ER, i had CT Scan and i was told there is no hemorrhage, but something on mid brain and i need an MRI.

i opt out coming home and having private MRI and don't wait 4 weeks for MRI. on MRI they found a 3 mm cavernoma on my mid brain, surface area, with no history of bleeding and no surrounding vasogenic edema or significant mass effect. There is no obstruction of the cerebral aqueduct and the ventricles and sulci have a normal configuration.

i was told by neurologist to go home and resume my normal life, however , i am not myself and how i can resume my life? my numbness is coming and going , my balance is much better in the last 3 weeks but the vision is still disturbed, if i am lying down or sit i feel better , once i start walking i get dizzy.

i met with an ophthalmologist and i was told my right eye is slightly higher and my body try to suppress that and that's why i have the double vision.

she send me to a nero surgeon, my family doctor also send me to another nero surgeon, i am waiting to see them . i am so worried and dont know if i would ever get back to my normal, i am 37 and with two little kids i need to be active.

i was wondering if anyone from Vancouver is here and they know the best surgeon here? based on my research in the last 3 weeks, most canadians go to US to get the surgery done, is there any one here who can help?
somy
 
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Re: 3mm cavernoma on mid brain

Postby Carterst4 » Mon Dec 17, 2018 10:53 pm

Good Evening,

Sorry to hear about the news and we understand the concerns with this. We live in the US and I understand you are looking for someone in that area, however, my recommendation is to continue to look for a neurosurgeon and that particular area if possible that can provide you better answers and addresses your questions and concerns. Our understanding is that even if an MRI does not show a bleed, the nature of these lesions are microbleeds or somewhat a small leak. From multiple surgeons we have seen and literature we have read, there are difference between bleeds, seaping, ruptures ect. Although an MRI may appear clean, there are potential small leaks that can go unnoticed.. these can cause symptoms as well.

There is a very beneficial handbook on this site as well that helps differentiate between the CCMs too
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Re: 3mm cavernoma on mid brain

Postby Connie Lee » Thu Dec 20, 2018 3:32 pm

Hi somy,
A 3mm cavernoma with no evidence of bleeding would be considered an incidental finding, meaning they stumbled upon it but it is not the source of the trouble. 3mm is very small, as cavernomas go, and we know that a cavernoma that has not bled has a 97%+ chance of never bleeding. Surgery in the midbrain is difficult and often leaves deficits. I don't have an explanation for your symptoms and I don't mean to minimize them at all - they sound distressing. I would encourage you, in addition to visiting a neurosurgeon, to follow a parallel path of looking for another explanation, perhaps with a different neurologist or even an ear/nose/throat doctor.
Connie Lee
President and CEO, Angioma Alliance
On this journey since 2000, when my infant daughter was diagnosed.
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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