Newly diagnosed

New members can introduce themselves here

Newly diagnosed

Postby Kev » Fri Dec 15, 2017 1:55 am

Hi,
I was just diagnosed with a cerebral cavernous angioma. I had a seizure and went to the ER. After running tests they found it. I've read quite a bit from your site, and it has been very helpful! I just saw a neuro surgeon yesterday and they want to do an angiogram to get a better idea of what is happening. Just wanted to thank you for such helpful info. I knew exactly what the doctor was talking about, knew how little they really know, and knew what questions to ask. There was signs of it bleeding from three different spots, do you have any possible insight to this? It seemed to be puzzling to the doctor.
Kev
 
Posts: 5
Joined: Sat Dec 02, 2017 3:09 am

Re: Newly diagnosed

Postby Kev » Mon Dec 18, 2017 9:50 pm

Ok, well I guess it's not that welcoming of a group.
Kev
 
Posts: 5
Joined: Sat Dec 02, 2017 3:09 am

Re: Newly diagnosed

Postby Tigerfan » Thu Dec 21, 2017 2:01 am

There’s a Facebook group that is more active. The info on the site is very beneficial.
Tigerfan
 
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Joined: Thu Nov 09, 2017 3:29 am

Re: Newly diagnosed

Postby Elizabeth » Wed Dec 27, 2017 1:39 am

I'm sorry. I try to respond, but sometimes with two kids, and a brain injury I can't always chime in. I'm sorry you are having troubles. Yes the Facebook group is supposedly more active. You can try there and you can search here to find a lot of answers and the main site is filled with good information too. Angiograms are often done to rule out an avm or other types of malformations. I had one as well, but later learned that it was probably unnecessary as they should have just done an MRA/MRV to get the same information with less risk. Read up and see if you are near one of our "clinics". Where are you, we might be able to suggest a doctor that might know something or be able to help you. Again, sorry for the delay!
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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Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Newly diagnosed

Postby Michelle2000 » Thu Dec 28, 2017 6:54 pm

Kev,

Welcome. Most doctors do not see many patients with this, so finding a doctor who is knowledgeable is important and difficult. You can search this forum (search icon on top right of this page) with a location to see what people have had to say previously. The Facebook group is much more active and will get you quick responses. This forum tends to give more in depth replies, and with the search feature, has a lot of information. If you ask here, we may be able to direct you to less active users with symptoms or experiences similar to yours.

Best wishes,

Michelle
17 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)
Michelle2000
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Re: Newly diagnosed

Postby Kev » Sat Jan 06, 2018 5:51 pm

Just wanted to say I did find the Facebook site, and that is where you will find everyone. This is such a great community! I can't say enough good things about this place or the people associated with it!
Kev
 
Posts: 5
Joined: Sat Dec 02, 2017 3:09 am

Re: Newly diagnosed

Postby Elizabeth » Sat Jan 06, 2018 6:17 pm

I'm so glad you found the support you need! I love AA!!! The search function here is also very helpful...lots of old activity here!!! Take 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
Moderator
 
Posts: 1648
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles


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