Waking up that Thursday morning the 17th, if you had asked me if I had ever had a seizure my answer would have been no. Three hours later I learned that wasn’t really the case.
The morning progressed pretty calmly, getting ready for the meeting with Dr. Weingart. Maybe I did a little too much googling, some I regret. But mostly, it was just getting prepared to talk to the man that would be taking over my care. We set out late in the morning to go to the Zayed Pavilion at Johns Hopkins, where we would meet with Dr. Weingart and ask him a series of questions that we had collected and get an understanding of what was to come.
But on the way into the city in the passenger seat with Jenn driving, I started to get lightheaded, a little bit sweaty, and the left side of my body started to tingle. In hindsight, this had happened two other times – once the previous week and once early that week. Still, in each case, it only lasted about 90 seconds, came when I hadn’t been eating very much because I had been trying to lose weight to deal with that silly back problem, and I had just drunk coffee, which is rare for me. Each time, with a couple of deep breaths, everything just relaxed, and I had a snack and never thought about it again. This time was quite different.
We were on 295, passing Raven Stadium on the right as the tingling and intense sensations in my body just kept growing and growing. After about 3.5 minutes of escalating tnggling and starting to lose control of my left side, I made it clear to Jenn that we had a problem and we called 911. Jenn took a true hero turn over the next five minutes, as she had 911 on one line, Dr. Weingart’s office on the other line because we were so scared to lose this amazing appointment, and she’s driving through the heart of downtown Baltimore. This was yet another example of where Jenn’s side of the equation has been so much harder than mine. She got us parked on the side off the road and flagged down the ambulance with truly impressive speed.
My side of the experience started off more strange than anything else but built towards getting quite scary. Over the course of the ~10 minute episode it felt like everytime my heart beat the tingling and loss control of my left arm and leg escalated a tiny bit. Then the arm and leg started to spasm, then the tingling started creeping beyond my extremities and making it hard to breathe. But I was also able rational conversation where we discussed what who we should be calling and when we should be pulling over because I had absolute total control of right side of my body. The dashcam footage would be morbidly hilarious because I was literally crossed my right leg over my left leg and wrestling my left arm with my right arm to keep it from hitting Jenn while she was taking all these calls and driving. I envision a scene our out of Me, Myself, and Irene or Liar Liar – what is important is that is is comically overacted by with Jim Carrey.
The seizure subsided almost exactly as the ambulance pulled up and an incredible calm took over my body. It was initially terrifying because I had no movement of anything on the left side of my body but I began to wiggle my fingers and smile within the five minutes or so it took to move me into the ambulance.
The lead ambulance guy was amazing and really helped me relax and understand what had happened as he tried to get us to John Hopkins but ended up taking us to the University of Maryland Medical Center which we were right next to and was available to help immediately. He had a helper with him that hold a very different opinion of. The lead guy asked me if I would let his helper put in his first ever IV in my right hand and in my clearly diminished mental state I decided given all that was coming for me I should “practice my pain” and let him give it a shot. I really wish I had a video of this kid mangling and shaking and bleeding my hand trying to get this thing in but I was so out of it I barely felt it. I’m not sure that guy is lined up for the right line of work.
I spent the rest of that day and the next day in the emergency room of UMMC getting a CAT scan and going through a battery of neurological tests over and over and over. Over time a funny dynamic emerged because it was so clear that they wanted to admit me and take care of the tumor there at UMMC.
Little did they know the very first neurologist that came in to see me has already locked in my plan. He had actually spent his first few years at Johns Hopkins and when he heard that I was lined up with Dr. Weingart he could not have been more respectful and clear Weingart was the best in the business. It was probably the fifth independent confirmation that I had the right guy and the confidence that gave me remains today.
Dr. Weingart agreed to move our meeting to the following day and even moved up the surgery schedule from Thursday the 24th to Wednesday the 23rd. I would be his first surgery on that day. I kind of wish he could have been there for the day and 1/2 at the University of Maryland when every time they made a recommendation or tried to get to change my plan or my medication I would tell them that I thought that was a great idea but let me check with my doctor first. I think he would get a chuckle out of watching the notoriously humble neurosurgeons agree that that was a good idea. Even if it did look like they were sucking a lemon as they agreed.
Everything from there went smoothly and Jenn showed up the next day to take me from the University of Maryland over to Johns Hopkins for our appointment with Dr. Weingart (hospital #3 in a 3 day span). We had prepared a list of questions but as I expected we just sat down and he talked through everything we could possibly need to know and I left that room feeling great about the man, the plan, and what the next week had in store.