Finally have correct diagnosis

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Finally have correct diagnosis

Postby kalbright » Tue Feb 06, 2018 6:06 pm

Hi...I'm glad I found this forum ! I've been researching my diagnosis since September 2017. I was re diagnosed with Familial CCM after a bleed got me transported to a Houston Hospital. I have 2 brainstem angiomas and 15 or 20 of them around my brain. The bleeders are in the brainstem and were originally diagnosed as AVM when my first bleed at age 28. Now, with new imaging techniques they are able to see more of them and determined that I had actually grown 1 more in the brainstem. Because I have multiple CCM I was referred to genetics and incompletion of the testing I was told I had CCM 2 Exon 2-10 deletion. According to the doctors in Houston Have had repeated bleeds in the brainstem so they can't tell how big they are. They are both inoperable and I am still trying to wrap my head around all of this information. I have researched this topic until I can't see straight anymore and fighting to not feel defeated and depressed. It seems so BIG !! The headaches are pretty large and the bleed left me with ringing ears and pins and needles in my face, tongue, mouth, and right hand. The double vision has cleared up, my left eye has returned to its intended position, and my speech is normal. I feel grateful for those things. Now I just have to remake my life in terms that are good for my health and satisfying to me. THAT is the challenge I think. I feel overwhelmed with all of this information and surprised at this new diagnosis. Still wrapping my head around of it. I think its going to take some time to get used to this.
Posts: 2
Joined: Wed Jan 24, 2018 12:26 am
Location: Beaumont Texas

Re: Finally have correct diagnosis

Postby Elizabeth » Wed Feb 07, 2018 7:10 am


I'm sorry you have been diagnosed, but I'm glad you found us and that you have the "right diagnosis" at last. It is overwhelming, scary, and hard. I only had one and I was a mess. It does get better with time, but its a process..coming to terms with the new perspective. Multiples must feel even more overwhelming. You are not alone, so that's a good thing. Others here have multiples and are happy to share how they cope. If you are on Facebook, you might want to check in our group there. I'm not on Facebook but from what I hear, its very active. Also, it would be a good idea to sign up for our patient registry. There is much research ongoing and the registry is an important part of helping the scientist come up with a cure..hopefully some day soon. Brain surgery is currently the only treatment option and especially with multiples and deep brainstem angiomas.. Surgery is not a great option or even possible sometimes. I think there is a group of patients in Texas that get together...that might be helpful for you. Come back anytime... Wishing you all the best.
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.
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Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Finally have correct diagnosis

Postby Michelle2000 » Sat Feb 10, 2018 4:13 am

Welcome, Kalbright. I am glad you have the correct diagnosis, and have taken your time learning about it. It is overwhelming to consider it all at once.

Several people in my family have multiples, and they all deal with it differently. Like Elizabeth said, it is a process. Remember that brains heal slowly, so cut yourself some slack. Take rest breaks, don't overdo it, and celebrate the small victories.

Best wishes,

18 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
Posts: 720
Joined: Thu Dec 02, 2010 7:40 pm

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