1yr Recovery Date Coming Soon!

New members can introduce themselves here

1yr Recovery Date Coming Soon!

Postby q_leslie » Mon Jan 08, 2018 8:00 am

Hi All!
I was diagnosed with cav mal and had surgery in Feb 2017, I never knew there were other people like me out there. My cav mal was close to my cerebral but deep inside my brain so they had to cut through good tissue to get to it in the back of my head. I didn't disclose my condition for a couple of reasons.... I had to wrap my head around the fact that my brain has been bleeding and it could potentially lead to stroke, coma, or death, and no doctor could tell me when it start, why it started, how it start. And also because I didn't want to disclose to too many ppl I know because they would automatically put some kind of disability or look for a sign that something was wrong with my brain. I went through surgery and had to do rehab, I was determined to become normal again, I had to re-learn how to think pretty much, and how to walk normal again, balance and everything. Recovery is the hardest thing I have had to go through in my life because no one know what i go through on a daily basis... like REALLY know. I'm still recovering, still have headaches in my scarring area (not normal headaches). I have learned to know my limit on my body now, and this experience just bought to me a whole perspective of life and how much we should cherish it. On the outside I look normal, no one can tell that I had brain surgery but on the inside it's a different story. At times i feel like I'm alone in this battle but a refuse to giveup. I started thinking positively and teaching myself that I am still important and this disease is not going to overcome my life. My motto going into 2018 is ELEVATE POSITIVE THINKING. Now at this moment i'm ready to tell the world about my journey so far and hope that it brings some peace and joy to those who are going through things. I even created a clothing line not only is it encouraging for me to say those words but I want it to be encouraging for other no matter what they are experiencing. I hope to find support and encouragement in this grp. :D
Posts: 3
Joined: Mon Jan 08, 2018 7:40 am

Re: 1yr Recovery Date Coming Soon!

Postby Michelle2000 » Mon Jan 08, 2018 5:50 pm

Welcome, q-leslie,

Sometimes it take awhile to be ready to share our stories, and other times we don't have much choice. I'm glad you got to choose, and I hope you find people receptive and welcoming IRL when you do. You have a great attitude, and people need to hear the positive stories.

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

Re: 1yr Recovery Date Coming Soon!

Postby Elizabeth » Tue Jan 09, 2018 6:23 am


I'm sorry you have had such a hard time. I couldn't imagine ever "keeping quiet"...about anything actually. I have a big mouth and there is no chance i could keep quiet and brain surgery and recovery especially. Probably some of my family would have been happier if I would have kept it a secret...but there's no way I could. They did make judgements against me as a result as you feared..which is lame, but that's how it all happened. My circle got a lot smaller and that's a good thing. I've used this experience to learn how to say no better and more often. I only do things that I want to do now, not things that I used to feel obligated to do. This life is short and we should spend our time doing what we want and love. I love your attitude!! Positivity is literally what helped me see through the darkest places. This whole ordeal completely transformed my life, and yes rehab is the hardest job I've ever had, physically and emotionally. You are certainly not alone. I am very changed too. I'm not sure how much the change is my brain damage or how the experience changed me? It doesn't really matter. I'm lucky and happy to be here, as capable as I am. I wish I didn't need as much sleep as I require, but I need it or else I fall apart. Times have changed, and so have I. Cheers to a new you!!
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
Posts: 1677
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Return to Introductions

Who is online

Users browsing this forum: No registered users and 2 guests