Hello Fellow Survivors. As many of you, I feel incredibly lucky to be sharing my story, and here it is, the long version – because I kind of need to get it out…
Originally from Trinidad, I am a 49 y.o. mom of three teens (19, 15 & 15 - twins) married to a wonderful husband for 23 years now. We were on the last day of a 12-day ski-trip in the French Alps spending the Christmas holidays with my husband’s family. It was indeed as exciting and fun as it sounds until…
That Friday morning, January 5th, 2024, I went to the bathroom and soon after, out of nowhere, I felt like I hit my head on a concrete beam – pain radiated from the top of my head down and down my neck and spine. My knees became weak and wobbly, as I tried to go wash my hands, and then holding on to the walls to get to the sofa. Meanwhile, my husband had gone off to get some croissants for the kids, and my mother-in-law was awake with me. I should note that my French is fluent-ish, but intermediate at best, and all words left me as I was dazed and confused. I did not relay what I was actually feeling or had felt – I just held my head with a facial expression that I was in pain. She awoke my father-in-law (retired doctor) who checked my temperature, I think he checked my eyes, she put on her Apple watch with ECG function and I appeared “normal” – they suggested I lay down and rest. I made it to the bed and proceeded to vomit. There was nothing in my stomach. The context of that day was that my husband, three teens and I would pack up and head to the 5-hour train to Paris just after lunch, and fly back to Washington, DC on Sunday. Missing either of these legs would have been logistically complicated – in retrospect, of course, our logic was not the wisest. The train ride went fine – I felt tired and weak, but otherwise was able to walk as needed – I think I Googled my symptoms on the train and came across brain aneurysm, but kind of dismissed it. The next day, we had planned to take the kids around the neighborhood where we stayed in Paris, and so I mustered up my little energy and told my husband I just needed some Paracetamol for my headache. We took it easy, stopping and resting intermittently. We even had made plans to have dinner with friends who used to live in DC. I talked about my experience the day before with them and my friend suggested I should get compression socks for the flight.
Sunday, we got to the airport, and it was pretty clear that I was not feeling great… but we kept going. My kids and I waited on the side of the luggage line, as my husband went to print out the boarding passes, at which point, I just couldn’t carry myself anymore. I just sat on the floor and teared up. My older son ran and got an airport wheelchair and I got registered as needing assistance. All these red flags, we just blatantly ignored, but then again, the alternative would have been, go to the Paris Hospital and say, hey, I have a headache…? Reschedule five plane tickets? Other than feeling weak and some intense calf cramps (is this a thing or was it me skiing badly?), we made it back to DC. I ordered dinner on the drive back home, so that the kids could get to bed, as they would have school first thing in the morning. After dinner, I told my husband that I was going to have myself checked myself out at the ER, that something didn’t feel right, but assured him that it was no big deal, I can go by myself. My older son said he would accompany me.
We arrived at SMH around 8:00 pm on Sunday, Jan 7th, and my response to what I was there for, was essentially, I need to get checked out – there was nothing perceptably wrong with me. I got triaged when they drew my blood, did a chest scan around 12:20 am and they ordered a CT scan. Between being weak and jet-lagged, I was in and out of dozing off. At some point, I went to the front desk to ask about the wait for my scan and they reassured me the wait was normal. I dozed off again. A couple hours later, I found out that I had been removed from the waiting list as they had called me three times and I did not answer. I finally got in and the ER doctor said that the CT scan illustrated a “small bleed” and they were waiting for the neurology team. I called my husband. At this point, it’s around 7:40am on Monday 8th and just after my husband arrived, they said they were going to air-lift me to another hospital with a specialized neurology department (half hour on the other side of town, but 3 mins. by helicopter).
The paramedic said he did not expect me to be awake, as he transferred me to the stretcher. The paramedic and ER doctor then had a little stand-off in the hallway about my BP being very high and that I needed to get medication before the flight – the paramedic proceeded out the door. I should note that I am fully aware that this was serious, but at the same time, I’m thinking, ooh, I should take a picture from the helicopter (lol), as the only thing I held on to was my phone, but alas, I was strapped down. On the helicopter, mid-air, the paramedic tells me that my BP is extremely high and he was administering medication through my IV.
So we get to the other hospital, MWHC, waited a bit for registration(I think they transferred everything from SMH, but it still took some processing) and eventually my husband met me in the neuro triage(?) area just before the doctor came in to describe that I had a subarachnoid hemorrhage and I would be going in for an angiogram through the femoral artery, going to try coiling (describing all these new words to us), but it could potentially be more invasive with open surgery – they wouldn’t know until they we would be in the OR. I think this is the first time it really sunk in… My husband said we were in surgery for about an hour and a half and then said I was in recovery. Thankfully, they were able to coil the 10 mm aneurysm on the left side (on the “Y” of two arteries), but they also found a second smaller intact aneurysm on the right side that we would need to “take care of” once we know that the ruptured one is settled and stable. I stayed at the Neuro ICU for 8 days and 3 in intermediate care – they explained that post-aneurysm rupture, between days 7-14, is when I was most at risk for a vasospasm that could cause a stroke. I think it was the 3rd or 4th night when I may have had one or the beginnings of one in the middle of the night and they administered something through my IV. Otherwise, I was fairly lucid and chatted with the nurses. I relied on Amazon Music on my phone for background music and grateful that I was not experiencing sensitivity to light, so turned to Netflix during the day to pass time. The doctors and nurses all said that I was pretty lucky and that I was doing very well neurologically. I will be going back in for an “observational” angiogram in 3 weeks (Mar 7th) to see how “annie 1” is doing and I guess to determine what the plan is for “annie 2.”
So how did I end up looking for this group? I think throughout the hospital stay, the focus was of course on ensuring that the aneurysm was stabilized and that I pass the neurological and PT “tests.” Once I was discharged, I made it through the day with this silly Netflix series, “This is Us,” and I found myself in bed at night wondering about all the possibilities and what could have happened… If the “small bleed” was not so small while I was in France… what if the extra hours in the ER waiting room had a different outcome… I was having very vivid dreams and I was waking up every couple of hours. I suspect I also needed to wean off the schedule that the hospital had my body on and the every 6-hr Tylenol schedule. I was also afraid to sleep on my side – I had been sleeping pin straight on my back that whole time at the hospital as they had a direct BP monitoring IV in my vein. I woke up a few times in the middle of the morning just sobbing. Last week, I got up from my afternoon nap and was feeling fine, slathered a banana with some Nutella, took a bite and then proceeded to cry uncontrollably – out of nowhere. Later that night for dinner, with kids at the table, I had to run to the kitchen to cry. Was I feeling anxiety(?!) – my heart would feel very heavy suddenly. That second annie is certainly looming in my sub-conscious. And back to @Moltroub , my Bernadoodle has been a huge source of comfort and my daily goal to accompany my husband to walk him to the park. I attached a photo
Depending on the next angiogram, whether we treat annie 2 soon and how I feel, I may tentatively go back to work mid-April based on the doctor’s sign-off for medical leave forms and it just seems… so out of reach. I have already figured maybe I could start 24 hours/week at first so that I could continue my mid-afternoon nap time that my body now expects. How long after your procedure did you go back to work? I’m seeing six months for some? Do you still need naps? Do you get fatigued? I look forward to connecting… (if you made it this far in my little story). Thank you!