Newly diagnosed with CM...there's a large family history

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Newly diagnosed with CM...there's a large family history

Postby AngelaZ » Sun Oct 14, 2018 8:24 pm

Hi, my name is Angela and I'm in Orlando FL. I have recently been diagnosed with a CM on my right fronto-parietal junction. I am no stranger to these things as my niece had surgery to remove a CM in 2004 and my son had surgery to remove a CM in 2010. Since then, my brother has been diagnosed with multiple CMs, my 1st cousin has been diagnosed with one, my other niece and also my nephew have been diagnosed. My diagnosis has me so scared and worried for my other 3 children and 5 grandchildren. My other 3 children, as well as myself were all checked via MRI when my son was diagnosed and we realized this was hereditary. At the time, we all checked out fine; however, now I have one that has shown up :(

I few weeks ago I began having what seemed like vertigo symptoms. I felt more unsteady and off balance than dizzy. At one point it got so bad that I had to leave an event I was at and go home and lay down with a cool washcloth on my head and I felt very nauseous. This got worse when I had what I can only describe as an "episode" that felt very unfamiliar and hard to explain...sort of like I was going to faint. At that point I went to the ER since it was the weekend and my PCP doctors wasn't available. At the ER they first did a CT scan and it showed what looked like an AVM, but with our family history I knew right away what it was. MRI confirmed a CM. I stayed in the hospital for 2 days waiting to see a neurologist. When he finally showed up he just blamed the symptoms on what must be vertigo and said it was "all in my head" and to see and ENT. I have an appointment with and ENT this coming Tuesday also an appointment with a different neuro doc on the 22nd. I would love nothing more than for him to be right and it's just vertigo that will clear up and the CM was just an incidental find. However, now I'm having some mild "pressure" headaches that I've never had before and also my right eye is feeling kind of weak.

One of my biggest concerns at this point is making sure the rest of my family is okay. I'm only just beginning to research how to begin genetic testing. Any advise is welcome!

I'm SO happy I have found this community! I wish I had found it sooner when my niece and son were first diagnosed. I have also requested to join the FB group. Thanks in advance for any and all support/advise!
AngelaZ
 
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Joined: Sun Oct 14, 2018 8:03 pm

Re: Newly diagnosed with CM...there's a large family history

Postby Elizabeth » Wed Oct 17, 2018 6:26 am

Welcome,

I'm sorry you've joined the club, but glad you found us. I think there is an active AA group in Florida so you might have some luck finding help locally. Also, the facebook group is active from what I hear. There are some older threads on genetic testing here. If you search, you will likely find the information that will help you. I'm sorry I don't know much about it. You can also register as many affected family members in our patient registry. The scientists are working on a cure which could be especially important for your family. There is a study ongoing right now that you might be interested in. I will try to post the link tomorrow.

I can only imagine how scary it is. I only had one and I was very nervous. I hope you and your family will have an uneventful course.
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


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