Surviving a Brain Aneurysm Part Two
A few weeks prior to my brain aneurysm rupturing during that trip to New Hampshire, I had posted a sweaty post-run picture on Instagram captioned, “Nine miles done. Screw you heat index.” I ran nine miles in a heat index of 105 degrees. How does a seemingly healthy, athletic 39-year-old woman just drop from a brain aneurysm rupture? Of all the things I anticipated over the years, a brain aneurysm was not one of them. Skin cancer, sure. I worship the sun. Liver disease? Maybe. I do love my wine. Even Ebola could have gotten me and I wouldn’t have been surprised. I had no warning signs. No headaches or dizziness in the days or weeks leading up to the rupture. I had no obvious risk factors. I was not a smoker, did not have high blood pressure or a family history of aneurysms. No diabetes, no obesity. The only risk factor I had was that I am a woman, and that only increases chance of aneurysm slightly.
I don’t remember the exact sequence of events after my surgery. I’ve been told I didn’t wake up that day, and that the following day I was conscious, but in and out. I’ve been given a photograph from one of those first days of my daughter sitting at the bottom of my bed in the neurocritical care unit with a drawing she made for me. The first of many of her drawings that would become the wallpaper in my room. It was the beginning of the longest three weeks of my life.
There were many more bad moments than good. From my first time out of bed trying to take a few steps and having my legs spasm and the pain be too intense, to listening to the moaning of the man in the next room before he died, my experience was nothing less than torture. But from the first day I was awake, I continued to tell everyone that I was ok – I was fine, and I was going to be fine. There was no other way.
There were three major challenges ahead. The first two – vasospasm and cerebral salt wasting – are common after effects of subarachnoid hemorrhage. Both typically begin a few days after hemorrhage. Vasospasm is a consistent contraction of the blood vessels triggered by the breakdown of blood products accumulating in the subarachnoid and perivascular spaces. This narrowing of the arteries reduces blood flow and can cause stroke. Vasospasms usually begin three or four days after an aneurysm rupture, with their intensity peaking between days seven and 14. Cerebral vasospasm leading to delayed ischemic stroke is a major complication and source of morbidity after subarachnoid hemorrhage. Vasospasm occurs in up to 70% of aneurysm rupture patients. Vasospasm is monitored using MRI, CT scans, ultrasound, electroencephalogram (EEG), and by continued clinical assessment for neurologic deterioration. I had all of the above. The tape holding the EEG electrodes to my forehead and face for two weeks took large chunks of skin with it when they were finally removed. My team of doctors (that I fondly called the Little Green Men because of the color of their scrubs) were in my room by 7:00 a.m. every morning to assess my condition and make sure I remembered who the president was and if I could still recite the alphabet. Nurses took all of my vital signs and asked me similar questions every two hours for all but the final night of my hospital stay. I had at least one CT scan in my room and when I was able to be moved safely, I was carted down to radiology for scans. Making it to day 14 was a huge milestone.
Cerebral salt wasting is a syndrome of renal sodium loss that for whatever reason, often occurs after central nervous system injury. It occurs hand-in-hand with Hyponatremia – which is when the level of sodium in the blood is too low. Basically, with Hyponatremia, the body flushes out all of the sodium in every way it can. (Patients will urinate excessively.) The cerebral salt wasting follows the Hyponatremia. The treatment for Hyponatremia is fluid restriction. Which meant nothing to drink. No water. Not one drop (except I may have convinced a family member to give me a sip once or twice). Nurses would give me a swab to wet the inside of my mouth every few hours. It should also be noted that fluid restriction exacerbates vasospasm. Brain hemorrhage treatment really is a balancing act. So, Hyponatremia treatment is to restrict fluids, and then cerebral salt wasting treatment is IV hypertonic saline solution pumped into the body. Again, producing large quantities of urine. Remember that drain they put in my head? That was still there too and any time I needed to get out of bed, the drain and all the monitors had to be unhooked. I wasn’t steady on my feet either, so I was catheterized for two weeks. The symptoms of both Hyponatremia and cerebral salt wasting include nausea, headache, lethargy – so basically just compounding what I already felt. If untreated, cerebral salt wasting will lead to coma. When I was finally allowed to have anything to drink, it was Gatorade only. I quickly discovered that drinking only Gatorade will actually leave sores all over the inside of your mouth. And wreak havoc on your intestines.
The third challenge I had to overcome was having the drain removed from my head. When there is bleeding from an aneurysm, sometimes the pathway through which the cerebral spinal fluid drains can become blocked. The blood in the spinal fluid irritates the nerves down the spinal cord and causes extreme pain in the head, neck, back and legs. The drain was to remove backed up blood and spinal fluid from the area around my brain. The plan was to do a drain removal “trial”, where they don’t actually remove the drain but clip it off so it isn’t working. The purpose is to see if the path has cleared and the body can drain enough fluid on its own. It is extremely painful when it doesn’t work. And I failed the trial twice. The team had already begun to talk about putting a permanent shunt in under my skin that would allow the fluid to drain from my brain into my abdomen. I knew I needed to will my body to start working.
Throughout all of this, I was also doing physical therapy. Physical therapy early on was literally getting me from my hospital bed to the chair next to my bed. It progressed to standing up and taking a few steps. As time went on, my physical therapist had me start to walk down the hallway with a walker. Some days it was tolerable, some days the pain in my back and legs was too intense. I eventually made the whole lap around the ICU. Then I ditched the walker and relied upon my physical therapist and family members for support. I was mobile.
On day 16, after the risk of vasospasm subsided and they removed all of the EEG leads from my head, one of my nurses spent an hour brushing the ratty, tangled mess my hair had become. My sister removed the old nail polish from my fingernails and tweezed my eyebrows back into shape. When my daughter came in my room that night for dinner, she climbed up into my bed and snuggled in next to me. It was the first time she looked at me like I was her mom and not a monster. There was hope.
During the beginning of week three, I finally passed the drain removal trial and they were able to remove the drain from my skull. Once the drain was out and my head stitched up, my nurse was actually able to wash my hair! I didn’t know how much longer I’d be in the ICU, but things were looking brighter. More and more IVs and tubes and cords and monitors were removed from my body. I was allowed to shower! They were making plans for me to have in-home physical therapy when I returned home.
On the evening of day 20, my doctor came in and said, “You’re going home tomorrow.” Hit the panic button! I replied, “I can’t go home. How am I going to survive? How do you know?” To which he explained they understood the course of aneurysm rupture recovery and I was on the right track and they didn’t need to monitor me anymore. I would be sent home with instructions and medications – blood thinners and pain killers – and it would be six months before they looked at me again.
The next morning, my physical therapist came in and said goodbye. She also said there would be no in-home P.T. for me. My body had been so strong coming in, I would bounce back quickly. I was weak, but she knew I’d be ok.
I collected the few belongings I had. I took down my wallpaper drawings and all of the cards and sentiments I had received from friends and family. I put a wrap on over the bald area of my head and hugged my nurses on the way out of my room. I stopped at the front desk and hugged the receptionist. I cried. I walked out of the ICU on October 29, 2016 and into the rest of my life.
How would I survive outside the safety of the four walls of my ICU room?