I survived a brain aneurysm : My story
September is Brain Aneurysm Awareness month so I thought it would be appropriate to finally talk about what happened to me, exactly 3 months ago today. This was probably the hardest blog post for me to ever write, and the most personal one. Hang on to your hats, this is going to be long and not for the faint of heart.
My story starts back in 2010. I had an almost nonstop two-week headache in the back of my head, in a very specific spot, almost like a pinpoint. I remember describing it as if something was drilling a hole in that specific spot. I went to the doctor and was told that it was most likely a tension headache, from having bad posture as I sit at my computer, or possibly from stress, or stuffy sinuses. I took Advil and cold medicine and that seemed to make it a little better. The headache eventually went away so I didn’t think much of it.
About a year ago I was working on editing photos and suddenly my right eye got blurry and I almost couldn’t see out of it, kind of like the auras migraine sufferers get. Google said it might be my retinas detaching – WHAT!? I panicked and ran to my eye doctor who said that it’s possible I had a low grade migraine, but everything was fine with my eyes. It didn’t happen again so I didn’t think much of it.
For the past few years, every morning I woke up with a terrible headache around and behind my eyes. I thought it was “caffeine withdrawal” because it usually went away after a cup of coffee. More recently, though, the headache stayed all day and I had to pop a couple Advils to make it go away. I thought that maybe I was just overdoing it with the caffeine, and didn’t think too much of it.
What I didn’t know, is that I should have thought VERY much of it. It’s possible that I had that aneurysm in my brain since birth, and those headaches and blurry vision could have been my aneurysm saying hello and warning me that it’s growing or getting close to rupturing. And because it’s something I never imagined would happen to me, and just didn’t think about, I simply didn’t pay attention to the signs.
In mid-May of this year my husband and I traveled to his home state of Indiana to visit family. I like to read on flights and this booked jumped out at me at the airport bookstore – Brain on Fire, a true story about a young woman with a mysterious brain illness. The book captivated me like no book has in a long time. I finished it in just a few hours. Had no clue a fire was brewing in my own brain.
About two weeks later, I woke up with a headache, the same headache I had the previous day, and in that same spot in the back of my head that hurt a few years ago. I thought, maybe this is my first real migraine and I just have to make it through. My mom got migraines when she was around my age so it made sense. My husband is a migraine sufferer and he confirmed my suspicions that that’s probably it, especially when my head hurt so bad I threw up – thinking maybe it’s a migraine mixed with a stomach bug. Or a migraine caused by a stomach bug. Something like that. Something simple and not life-threatening.
I had a shoot that evening, and I wasn’t planning on missing it. After all, it was just a headache, I could power through it.
I went to my shoot, head still hurt. On the way home in my Uber, I was Snapchatting about my migraine and how the bright lights were hurting my eyes. I got home, head still hurt, even worse than before. It hurt in the back of my head in that same spot, and really all over too, behind my eyes, and my temples. I took Excedrin Migraine and tried to go to sleep, but it seemed to be getting worse instead of better. Is this really how migraines feel? How do people deal with this? This is terrible – I thought, not knowing that the worst was still ahead of me.
Sometime around midnight it happened. It felt like a baseball bat to the back of my head. Like a thunderbolt. Like nothing I’ve ever experienced before. It was an audible POP! I sat straight up in bed, and told my husband to call 911, something was seriously wrong and this was more than just a headache. I felt dizzy, and almost like I was in a bubble, I couldn’t hear, and my vision was blurred. My neck and back were stiff. I was relaying all this to my husband as he talked to the 911 dispatcher. Then we had to go out into the living room because we can’t hear our buzzer all the way in the bedroom – and I couldn’t walk. I had to somehow latch on to my husband and he somehow got me out into the living room where I basically collapsed on the floor. The pain was so bad I just wanted to pass out so I don’t feel it anymore. A few minutes later, I had a seizure and passed out, after vomiting and losing my ability to speak. This was eerily similar to what happened the night Susannah Cahalan was taken to the hospital in her book Brain on Fire, that I read just two weeks earlier. I knew something was very wrong and I needed to get to the hospital ASAP.
This is where things get pretty fuzzy, and I don’t remember much of the next 3 weeks. Quite a bit of the rest of the story is put together from accounts from my family and my medical records.
I was taken to the nearest ER where I was in a waiting area, had a grand mal seizure and finally after some time (no idea what took so long and I’m lucky I didn’t die in that waiting area!) I was taken to radiology. A CT scan determined that I had a subarachnoid brain hemorrhage and had to be transferred to another hospital. That’s how I arrived at the Neuro-ICU at Mount Sinai, where immediate action by skilled doctors saved my life. I had a brain aneurysm that ruptured and my brain was drowning in blood. I had a hole drilled in my head to relieve the pressure on my brain, and a catheter put in to drain excess spinal fluid. Then, my ruptured aneurysm was treated with a procedure that I affectionately call “science magic”- my aneurysm was coiled – a super thin metal wire was passed through an artery over my hip, and the wire forms a coil in the aneurysm preventing it from bleeding.
About half of my head was shaved when I woke up from the first surgery. The second surgery came a few days later, I was getting a ventriculoperitoneal (VP) shunt put in – something that will stay in my head for the rest of my life – a medical device that relieves pressure on the brain caused by fluid accumulation. When they were about to take me to surgery, I asked the doctors if they could just shave the rest of my head. I woke up like this:
I was in the hospital for a total of 17 days, from June 2nd to June 19th, with most of that time spent in the ICU. My family was by my side the whole time, and numerous friends stopped in to see me, sent cards, texts, emails, etc and I appreciate it so much. I don’t remember much of my hospital stay, but the little bits that I do remember include the friendly, caring faces of the people who were by my side. I will never forget that.
My husband was there every day, I don’t even think he slept or ate much. And he was so strong the whole time. He’s an amazing human being.
By day 17 I was ready to get out of there. I wanted to be home. I was covered in bruises from the frequent blood drawing and blood pressure monitoring. I was just done with the discomfort of being in the hospital and wanted to be home with my dog and my stuff and my cozy blankets.
I also really wanted to get back to work. I wanted to be there at the next wedding I had booked, on June 24th in Long Island. Of course, by this point I hadn’t yet walked more than a few feet, I also barely ate at the hospital and had almost no strength. When I got home, the walk from the car to my building elevator took everything I had. I had to lie down and drink a ton of water to slow down my heart rate. I couldn’t really look at bright screens just yet, so doing work on my computer was almost impossible. I couldn’t stand for more than just a few minutes at a time. A few days after I got home I walked my dog for the first time – just around the block. And after that, I was completely exhausted and needed a nap. As much as I wanted to, I had to let it go and let another wedding be taken care of, because there was no way I could be on my feet for more than a few minutes.
Until I had my follow-up with my neurologist, I was afraid to be alone, afraid that something might happen. Every single day between June 19th and July 6th, different people rearranged their schedules and came to hang out with me while my husband worked, to “brain-sit” as I liked to call it, so that I never had to be alone, and I will never forget that. I SO appreciate every kind gesture from that difficult time. The follow-up with my doctor relieved a lot of my worries and made me more confident that the risk of another aneurysm forming is very, very, very low, and I’m expected to make a complete recovery within a few months, and a year from now it’ll feel like this never happened. Still, I will have to go back for regular brain scans for the rest of my life to make sure no other aneurysm forms.
It has now been 3 months since that terrible night. I got home on June 19th, and didn’t do much for the rest of June, because all I could really do is maybe walk around the block once a day. For most of July, I was still so tired. I got out there a little more and even photographed a small wedding/elopement, but the fatigue was so strong and I needed daily naps. In the past few weeks I have noticed that I’m regaining a lot more of my strength and endurance. I still have a little short-term memory loss, but it’s getting better. I still have constant ringing in my ears, but I only notice it when it’s really quiet. I can be on my feet for several hours, even in the heat, without feeling that awful fatigue feeling, and as long as I keep hydrated I am not too bothered with headaches. I’m one of the lucky ones. Not only did I make it, but I made it without any serious neurological damage.
This harrowing experience has shown me how precious life is, and how quickly it could slip away. I appreciate so much about life now, every little thing is important and amazing, and I feel like I don’t get as bothered by the small stuff anymore.
It’s so important to get preventative testing especially if you get frequent headaches or have a family history of aneurysms. Early detection could save your life!! If someone you know has had some of the symptoms I described above but are hesitant to visit a neurologist – send them this post! I always thought brain aneurysms were a “one in a million” chance, but the reality is that one in 50 people in the US have an unruptured aneurysm! A ruptured aneurysm is fatal 40% of the time, and even when it’s not fatal, it can have permanent neurological consequences. I’m one of the EXTREMELY lucky ones and I will never stop being thankful for getting my second chance at life!
Also, as a business owner and a wedding photographer – this more than anything else has made me realize how important it is to have a backup system in place – I missed two weddings while I was recovering, but they were taken care of by my talented team! My husband quickly notified them of the situation, and even my June 4th wedding was taken care of, while I was still unconscious in the hospital!
This is me now – I decided that since I’ve never had my hair this short, I am going to have some fun with it! I’m feeling pretty great, enjoying the last bit of the summer, and looking forward to a busy couple of months of wedding photography!! I am
Big thanks to the staff at Mount Sinai hospital for saving my life, especially the Neuro-ICU unit, and to Brain Aneurysm Foundation for raising awareness, helping survivors, and answering some of my questions as I recovered.
Thank you from the bottom of my heart to Taylor, Jayd, Lauren and Brian – who beautifully photographed weddings while I couldn’t. There are not even enough words to thank everyone who reached out, sent a card, an email, a text, took care of our dog, came to visit in the hospital or to brain-sit me at home – you are the best humans. Thank you all!