Newly Diagnosed - Brain Cav

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Newly Diagnosed - Brain Cav

Postby Emidio alexandre » Sun Nov 25, 2018 12:17 am

Hi, thank you for allowing me in this forum.
My name is Emidio, 37 yrs old, really healthy (except the obvious) and I live in Portugal. Long story short, i´ve experienced a few days of "strain headaches" that begun at the gym (I used to workout hardcore, heavyweight training). So although the pain wasn´t super severe, I went to the ER and the doc suspecting aneurysma, called for a TC scan. Lo and behold, the suspicion of a cavernoma arouse. MRI was quickly called upon, and a Neuro appointment.

So now for the facts, post MRI :

I do have a fairly big cav (16 mm) , Sub-lenticular posterior left and with the hemo residue halo that we all know means i´ve bled from the cav at some point before. All the rest of the brain seems to be fine.
My neuro said that the headache shouldn´t have nothing to do with my cav (I also have a hernia in my cervical) and also there´s the fact that when I got the emergency TC there was no active bleeding. He actually was also suspecting a Chiari malformation (which thankfully I do not have) linked to the headache, rather than the cav. Incidental finding or not, it is what it is. Doc is the head of neurosurgery in the hospital I went to, but I was kinda in awe with the way he really brushed off the cav with some ease... Surgery wasn´t even on the table for now because I am assymptomatic (and the area is kinda complicated, deep and could leave my right side paralysed he said). So he just said "do an MRI every year, so we can see if the cav is silently progressing. And be happy"
That kinda left me thinking "oh well, this is not that big of a deal deal", but after alot of reaserch I do know it´s a HUGE deal. Just there´s nothing I can do or know more than we know now until either I have a bleed or do an MRI next year. The Doc prolly though there´s no point in giving me a ton of info and probability, at this point. - speaking of which, he did speak of a 5% year/bleed ratio, and said it I had a bleed, i´d know for sure, numbed right side of my body or even paralysis. Wich left me confused, because the hyperdense halo means a past bleed, and I never ever had such symptoms, although I obviouly had a bleed. So maybe an ooze?
So, having said that, I left the office fairly happy , until I got more and more informed. Wish I didn´t.
Now I know I can get to a point where I need surgery, remove the cav and have it come back, or get a ton of new cavs. I know I only have this one cav, and I know multiples are associated with familiar form, but in spite of having zero brain cavs, my sister does have multiple small liver angiomas. So there might be something there to add to my panic/fears. I know I can get genetic tested and all, but where I am at right now mentally is this : I rather be kept in the dark. I don´t have kids atm, so I don´t see a point of being certain that I have familiar type and suffer from that antecipation. The only way I can live right now is yes, to take precautions (no thinners, scuba, blood pressure) but just forget about this, until I get another MRI. I´m literally drowning into myself with all the research, and it´s consuming who I am. There is nothing I can do to change the outcome of the next exam, so I rather just put all of this matter a mental briefcase and close it for 12 months. But it´s being really, really hard to do so. I know I´m suposed to be grateful, I know I can anyway die from a car crash, but it´s being really hard to cope with brain dx. Any advice would be helpful, for the ones of you that live with this for some years.
Thank you and sorry for the long text
Emidio alexandre
 
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Re: Newly Diagnosed - Brain Cav

Postby Elizabeth » Wed Feb 13, 2019 1:51 am

Welcome,

I'm sorry for the delayed response. I'm dealing with tons of other things lately. I do understand the fear...we've all been there when we were new. What if??? Oh no, what if?? You already know what to do, you said it in your comments. Be thankful. Focus on gratitude and the moments right now. Try to not anticipate the future or the what it's. Yes, do what you can ...live a healthy balanced life, no blood thinners, scuba diving or roller coasters. Yes, its much harder to actually follow through on what you know to do. If you need extra help, try to find a therapist or psychologist to help reinforce what you know. Most likely you will be fine. Take good care!!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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