Newly diagnosed

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Newly diagnosed

Postby habibii_sala » Thu Aug 10, 2017 7:40 am

Hello all, Iv'e been diagnosed (a few days ago). I'm 24, it's about 2cm, left frontal lobe, it's slowly leaking, and I'm scared. They want to do a cerebral angiography to get a better look and we shall see where it goes from there. Iv'e always had vague and scrambled symptoms that none of my doctors took interest in till my now doc got to do an MRI. And now I am here. Great to meet you all, sorry it had to be this way lol.
habibii_sala
 
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Joined: Thu Aug 10, 2017 7:30 am

Re: Newly diagnosed

Postby Elizabeth » Thu Aug 10, 2017 9:19 pm

Welcome,

I'm sorry you've "joined us", but glad you found us. Read the newly dx section on the main site. General recommendations are NO blood thinners of any type(no advil, aleve, aspirin, etc), no rollercoaster and no scuba diving. From what I understand the frontal lobe is a " good location" if you have to have something in your brain that doesn't actually belong. ;) I know its scary, but you will be fine. A lot of doctors know little to nothing about cavernous angiomas, so learning enough yourself is advisable so you can advocate for yourself. Where do you live? You might want to reach out to one or more of the known experts so that you can get good advise. I personally got so much bad, dangerous, irresponsible advise before I found real experts. Good luck!!
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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Location: Los Angeles

Re: Newly diagnosed

Postby habibii_sala » Fri Aug 11, 2017 6:50 am

That is what I am understanding, and praying for no complications! I wish I knew about the no roller coaster rule before going to an amusement park to de-stress. I have started reading and am so thankful for coming across such a website. I live in Buffalo, NY and decided today to get a second opinion at the Mayo Clinic in Rochester, NY. Would you happen to know of any other places near me? Willing to travel to nearby states if it comes to it.
habibii_sala
 
Posts: 2
Joined: Thu Aug 10, 2017 7:30 am

Re: Newly diagnosed

Postby Elizabeth » Fri Aug 11, 2017 3:30 pm

I think some people have had good experiences at Mayo. Dr. Awad is one of the best. He's in Chicago if you can travel there.
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
Moderator
 
Posts: 1556
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Newly diagnosed

Postby plopez6 » Sat Aug 12, 2017 6:55 pm

There isn't much more that I can say that Elizabeth hasn't said. Just know we are behind you and encourage you through this time.
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