I wish I could say that I laid down last night and got a restful night of sleep. However, once I climbed into bed I, unfortunately, had another seizure.
I can only remember the first few seconds of the seizure before I lost consciousness.
I remember Laura asking me a question and when I opened my mouth to answer her I started seizing. I could hear her becoming increasingly concerned, calling my name and running over by my side. The next thing I remember was being loaded into the ambulance.
When I started seizing Laura called 911 again and they rushed emergency personnel to our place.
This time I remember most of the trip to the emergency room unlike last time. The medics had me run through a variety of tests and asked me what happened to bring us to this point.
At the ER I started to feel increasing pain in my head, neck and left shoulder. I figured this pain was from the muscles tensing up when my body started seizing.
Our room was positioned right next to the ambulance entrance. It was fortunate for us because our neuro surgeon happened to walk in to see a patient and he saw us laying there.
Even though he wasn’t on call he consulted with the ER doctor, called the neuro oncologist, stopped in to check on us several times and worked with the ER doctor on what he wanted to see for a treatment plan.
As time continued to tick away my left shoulder increasingly started to hurt and my range of motion decreased. At one point I couldn’t lift my hand off of my leg again…much like the first seizure when I dislocated and fractured both shoulders.
The ER doctor ordered a round of x-rays for my left shoulder. After much fear that I had re-injured my left shoulder, the x-rays came back negative. The ER ran blood work that came back negative as well.
The pain in my shoulder is from the body tensing so hard during the seizure. Previously our neuro surgeon had told us that during the remnants of a seizure can continue to affect the body for days after.
The medical team, consisting of the ER doctor, the on-call neurologist, our neuro surgeon and neuro oncologist, decided to add another anti-seizure medication to the treatment plan since they’re not sure what caused this follow-up seizure.
Our neuro surgeon explained that sometimes seizures continue to happen even though there is no pressure on the brain. It can be based on the scar tissue or several other factors. He also assured us that it was not from stress so there is no concern with work or fitness.
We were finally discharged from the hospital around 2:00a. To help me sleep and deal with the pain I took 2 Oxycodone that we had left from when I got home from the brain surgery.
I cleared most of my schedule for today so was able to sleep until 9:15a once I fell asleep.
When I woke up most of my upper body was sore. It probably didn’t help that it was chilly and raining hard outside.
I left messages for both my orthopedic surgeon and neuro oncologist.
Though there are no concerns with my shoulder, the orthopedic surgeon is able to access the x-rays that were taken last night so wanted his office to know.
Our neuro oncologist called us back mid-morning and we talked through what happened as she tried to figure out what could be going on.
As we talked she did say that this additional seizure is leaning her towards recommending a form of treatment instead of only monitoring with an MRI every few months.
I’m still not sure where we will end up with that decision but the seizure last night was enough to scare us into seriously considering going through one of the chemo treatments.
She discussed the possibility of providing us with a nasal spray that can be used to stop a seizure if another was to occur. She wanted to consult with her seizure colleagues before moving forward with prescribing that.
She also asked if she could refer us to the UCSF epilepsy team. There is no concern that I have epilepsy but they are the pros at seizures so bringing them onto the team sounded like a good idea. We’ll likely schedule an appointment with them for when we get back from Connecticut.
There are no concerns with us traveling back to CT on Friday especially now that I’m on this additional medication.
I was exhausted from the seizure and long night so I ended up taking a nap on the couch for a couple of hours this afternoon before physical therapy.
We took it relatively easy today at physical therapy due to the deep soreness, especially in my left shoulder where my range of motion has been impacted from the seizure.
After physical therapy I stopped to get my hair cut before leaving for Thanksgiving. I’m happy that my hair has grown back another inch. With each hair cut I’m getting closer to being able to style my hair again with gel.
I’m relaxing for a little while before taking my medications and heading to bed. Tomorrow will be a busy day with a full work day and having to get ready to fly out very early on Friday morning.
It is scary having another seizure. When I had my last seizures I was admitted into the hospital and had surgeries to fix what happened. This time I was treated with some medications and no real reason for why it happened except that it is likely tied back to everything going on in my brain.
Beyond the fear of having another seizure, just 1.5 weeks after having my license reinstated, it is now revoked again, probably for at least 3 months. The little bit of individual freedom that I had regained has been taken back away.
Well, last night and today did not go as I expected them to last night at this time but we’re dealing with it and will stay focused on improving whether it is pushing my shoulders with working out, seeing additional doctors and/or deciding to start chemo.