I can’t believe it’s been almost a year since I was told I have an AVM in my brain. I don’t know why I haven’t posted. I am always reading through all of your stories.
This is my story:
I had my second daughter last June 24th. It was a beautiful, natural, unmedicated delivery at a midwife center. I felt great. And so happy I could avoid the dreaded hospital (huge fear of mine).
A week later, I woke up in the middle of the night, with my baby beside me with the worst headache of my life. I woke my husband up. I couldn’t see for a minute. I was terrified. As quickly as it started, it stopped. I went back to sleep. I just had a baby. I wasn’t sleeping much. I figured my body was just adjusting. When the same thing happened the next night, I knew something wasn’t right. I googled ‘worst headache of my life’ and saw brain tumor and thought, ok, I’ll call my midwives. I’m probably just dehydrated.
The next morning, I called. They asked me to come in right away. My mom picked me and my baby up and we went. My blood pressure was higher than it should be, and they wanted me to go to the ER at the hospital across the street. They were worried about pre-eclampsia.
After hours at the ER, with an IV of medication trying to stabilize my blood pressure, and an MRI a nurse came in to “tell me the good news and the bad news”. She said that I did NOT have pre-eclampsia, but they did find an AVM in my brain. She said she couldn’t give much info but they had an ambulance coming to take me to Jefferson in the city (Philadelphia).
I will never ever forget that moment. I will never forget the absolute shock of them actually giving me one of the worst case scenarios.
I will never forget the heart ache I felt when they told me I had to stay, and my newborn, nursing baby could not.
They had a hard time getting my blood pressure down. They determined I did have pre-eclampsia and that if I didn’t get that taken care of there was great risk of the AVM rupturing. So, it was an incidental finding but I needed medical attention immediately.
Very, very long story short they transferred me to the maternity ward. My baby came back to stay with me. And after 24 hours of receiving IV medication, my blood pressure was in normal range. I could go home. For a little. Until the following week when they would do an angiogram.
After the angiogram, I learned that my AVM was superficial and they were recommending a craniotomy. I wanted to enjoy my new baby, and my summer maternity leave. Fortunately, when I asked them if I’d be able to wait until my baby was over a year for the surgery, they said yes, I could. They were shocked I had two natural births and no AVM issues.
So right now, I need to make my appointment with my surgeons to get this thing scheduled. The past year has been a blur. Sometimes I don’t feel well, but I’m never quite sure if it’s related, in my head, or what. Sometimes I feel so isolated, and so scared I’m missing a symptom. The reality of what I could lose is too much to bear.
I am confident in my surgeons, as they are confident we can get rid of this thing. Jefferson has an amazing neurology department so for that I am grateful.
I am terrified. I try not to talk about it way too much, but it weighs on me every day. I know this was long, so I thank you for reading. I hope to post more, because I need help and I need support and I don’t want to burden my family. I know everyone is scared. Thanks again for understanding and being out there. I think we need each other.