My story

[Kyle53]

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.

Kyle xo

[Angela4]

@Kyle53 Hello and thank you for sharing your story. I am so glad you found the site. We have all had our freak out. It is scary. And it is difficult to explain to people even to your spouse. Since its inside of us people think we are fine even though we are not and we can have pain and sleep issues.

When I told my dr who is the head of stroke at Stanford my symptoms he said I could not have another rare brain thing…I said Oh you are just getting to know me… I only had to have embolisms so far. but have what seems perm nerve pain in my occipital lobes after my 1st angio/embolism but it was over 7 hours and I was still recovering from a massive stroke. and had a minor stroke during.

Hugs
Angela

[AprilY]

Hello fellow natural birth momma! You are very fortunate to have found out about your AVM prior to it rupturing. I somehow made it through two home births without any problems. I was 27 with my first baby and 31 with my second. My AVM was found after it ruptured this past January. My babies are now 13 and 9 and have been an amazing help through all of this! In my case I have naturally very low blood pressure, even during both my pregnancies. My AVM is located in my left occiptal lobe and the stroke has caused a small blind spot in my right field of vision. I am still trying to decide which treatment (embolization/craniotomy or radiosurgy). Craniotomy is preferred by my doctor because my AVM is superficial and surgically accessible, however, my doctor gave me a 50% risk to damaging my vision further. So it is hard for me to schedule a day for surgery when most likely my vision will be further impacted. Yet it is also nerve wracking worrying about another rupture which would most likely cause worse damage than the craniotomy. Life has changed, but I am focusing on all the countless blessings and things I do have compared to the few things I can’t do or may loose.

[Pidgemous]

Hi, I’ve always read that if you have an AVM , pregnancy can increase the symptoms or worsen the AVM , due to faster blood flow from carrying a child, I noticed after I had my daughter in October 2006 (she’s 11 now) I could hear my heartbeat in my ear a lot more and as years past the wooshing noise got worse. I mentioned it to my Dr but got fobbed off around first 12mths of having my daughter, firstly she said ‘I’m probably just listening out for it’ many years past and about 3-4 yrs ago I mentioned it to another Dr and she referred me to a ENT Dr, we went through the Sinuses route , but obv came to nothing, then had MRI and this is where they found my AVM , it was like yours Superficial a Front right lobe and surgery was my only option. I Had surgery last May 2017, best thing I ever did. Unfortunately the AVM also left me with a aneurysm which I have been seeing my surgeon about recently. They say it’s 4mm Aprox , and the chance of a eruption is 1/2% per annum very low. They have suggested to coil the aneurysm and maybe a stent, they said I can either just monitor it, or have the treatment. Or just have a think about it. I’ve chosen to have a think about it and they’ll give me another CT scan in september this year. But over all if you have been given the option to have surgery with it being superficial I would go ahead and have it done. I’ve never looked back. Yes the thought of surgery is scary. But it wasn’t as bad as I thought it would be. Very best of luck with it all xx

[JessiRose]

Hello I too am a natural birth mom and against the advice of the neurologist, but that is because my AVM’s were found before my children. I had a great birth plan in place that included an epidural, and no pushing to protect me from my AVM’s, but the anesthesiologist looked at the report of my back and refused. So I had no pain meds and and I pushed for hours, but no rupture. And same with my second child. So times even when they know and try to prepare for it things don’t go as planned, but I am glad to hear you are ok and that Jefferson was able to help you.