Recently I had a major seizure that lasted over five minutes. Scary, I know. Not really for me at the time because I have no recollection of it, even to this day. I don’t remember feeling like it was going to happen, like I usually do, or it happening at all. My mother and daughter were luckily in the room as it was coming on, and subsequently happened, so they were able to get me to a safe spot and make sure I was ok.
I’m very lucky to have so many people living with me and home some of the time for emergencies like this one.
My hubby was home that day too and was summoned upstairs to observe what was to be my worst seizure yet.
Everyone was pretty scared, but my daughter, being trained in first aid, took charge of the situation and kept a level head, which I heard made everyone more calm.
When I came to I was very confused. I was having a hard time seeing, which is a sure indication that my intracranial pressure had risen too high and my shunts were not working like they’re supposed to. I’ve had seizures in the past after my last surgery in November, but nothing to that magnitude. This one was the real deal.
When I’d had my seizures in November, because they weren’t severe and I recovered quickly, I was able to convince my hubby not to take me to the hospital. Coincidentally I had a neurosurgeon appointment the week after my first four seizures, so I said we would bring it up then, which is what we did. He thought the seizures were my brain resetting itself from being under such immense pressure for so long and that they would subside. We thought they had, until March 20.
Now my memory of that day is very choppy at best. I remember bits and pieces. Some of it was important information and the rest is stuff like how hot the ambulance driver was that drove me to Hamilton. Which is where I ended up.
My next clearest recollection was the Tuesday and thinking, “How in the hell did they find a vein in my inner elbow? That’s skill!” Considering I’m such a tough poke I was more than a little impressed and very nervous about loosing the site. The absolute last thing I wanted, or needed was a vein hunt.
My nurses came in regularly to ask me questions and my answers were usually the same, and wrong. I was so confused. I had no idea what hospital I was in, and completely thought it was the year before. But the one thing I was sure of was that I was in the hospital, and they weren’t letting me leave anytime soon.
My neurosurgeon wasn’t in the first day, so the ‘on call’ resident decided it would be a good idea to pay me a visit. He introduced himself and proceeded with the opening line of, “So you say you have a “headache””. I stopped him. My words were “I understand that you need to check on me, and I appreciate that, but my doctor is… and he will be in tomorrow I’m told. He knows my case and understands everything that’s going on with me. So in the interest of saving your time and my anxiety, I’ll wait for him. If you don’t mind? But you can still approve my pain medication right?”
He was thrilled that I stopped him. He thanked me for not wasting his time, or mine, knowing full well I would be getting my regular neurosurgeon the next day. For me it was very empowering. As confused as I was, I was able to ask for what I needed and wanted. It was a first for me.
All that day they kept me as comfortable as I could be, but I remained confused, dizzy and very nauseous.
I told my family to stay home and my hubby to go to work because there was nothing that was being done that day and since no decisions needed to be made I wouldn’t need them there.
Hospitals can be a very lonely place, but having to drag my family an hour away from home just to sit there and watch me sleep isn’t fair to them. They do it because they love me. I appreciate every minute they are there.
It was officially day three by the time I saw my neurosurgeon.
He explained that he didn’t know why I had the seizure or if I would have another one. Since I’m on so many anti-seizure medications I should be covered, but I still had one and he thought my shunt may have something to do with it.
So now we started making plans. My neurosurgeon started emailing his mentors to see what they would do. Revision of the LP shunt, which they can’t monitor? Revision of the brand new programable VP shunt, which was in an awesome spot just in a ventricle that keeps collapsing? Put in a new VP shunt on the left? A pretty major surgery, but could potentially offer some relief. Or a sub temporal decompression, my most feared surgery ever? Taking out a piece of bone from my skull and leaving it out. Forever.
He left it up to me to decide. Of course he would never have went with something stupid that would not have been worthwhile, but he wanted me, and the hubby to be part of the final decision. It felt really good to be an active member of my health care team. I felt supported and heard. My neurosurgeon regularly consulted with me on his plans regarding my care. I really liked that about him.
We were given a couple of days to think about what we wanted to do. During that time I was stuck in the hospital with their boring food and uncomfortable beds.
The hubby and I discussed the pros and cons of each surgery. What subsequent surgeries would be accompanied with each one and what the possible positive outcomes would be, because I really wanted a positive outcome.
I was leaning towards the sub temporal decompression. I thought giving my brain the extra space it needed with all the extra fluid would be the best option. My hubby on the other hand made a good point when he said “You can put one more shunt in to see if it helps. If it doesn’t, then you still have one more option. You’re not going to your last possible resort.” He’s a very logical man. He hates seeing me in pain and sick, but he also knows what’s best for me, especially when I’m not thinking clearly. And due to that damn seizure I was still all over the place in my thoughts and comprehension.
We decided on the new shunt on the left. It would be a whole new set up, so that would mean I would have to have abdominal surgery, as well as them tunnelling the tubing from my head. Having past experience with this surgery on the right I knew it wasn’t going to be a walk in the park.
We had made the decision on Sunday, March 26, and was put on the surgical board for the next day, in hopes that there would be time available. Now how it works in Hamilton General is that when you’re put on the board you may or may not have surgery. If a more urgent case comes up, you’re bumped.
I completely understand this logic. I would never want to be in a situation where me, or a loved one was waiting to get an emergent surgery while someone who is stable could have waited.
I was stable.
Monday came and went, with nothing by mouth and my family by my side. We have become very accustomed to this routine.
Tuesday, turned out my surgeon wasn’t performing surgeries that day, but we weren’t told until that morning. Annoying? Absolutely! More than annoying! Remember, my family is coming from an hour away to sit by my side and wait in a waiting room to hear that I am ok. I sent them home to rest. Up bright and early the next morning.
Wednesday, no food, no water, truth be told, I wasn’t hungry anyway. The waiting began again. The hours dragged on.
And then we heard the sound. The sound I had come to dread when I was waiting for surgery. The helicopter.
Whenever the helicopter arrived it usually meant that someone was in need of an operating room. My operating room. I was being bumped. Again.
In came my food tray and three cups of ice water (I had trained my nurses to bring me at least two or three at a time). I would cry every time, but I wouldn’t get mad. Someone needed my operating room more than I did. Someone needed my neurosurgeon more than I did. I was going to still be alive in a day or two. They may not be alive in an hour. How could I be selfish when they were in more of a crisis than me?
Thursday comes. Same rodeo different horses. All of a sudden, chaos. People are in and out of my room. Antibiotics are being hung, pain meds are given. Go to the washroom I’m told. The orderly comes to take me down. I kiss my husband and I’m through the doors.
I’m familiar with the smells of surgical wing. It doesn’t scare me the way it used to. Someone hands me a hat to wear. I think it’s stupid because I’m having brain surgery and they’re just going to take it off. They’re asking me questions and there’s a lot of commotion getting everything and everyone in place for what is my sixth brain surgery.
I always say a prayer before I go under. I’m not overly religious, but I was brought up believing in God and have always felt comfort in praying when I needed him/her/them.
Then I woke up.
Usually I remember the recovery room vividly, this time I remember a flash. I remember waking in my room and being very tired and sore. That’s about it.
Friday. I know from experience I needed to get up and moving. So up I got and away I went. I was done with being in the hospital. After almost two weeks of being there I wanted to go home. I wanted my bed. I wanted my cat. I totally forgot I had a dog for the first couple of days, until I saw a picture of him on my phone, so I wanted him too!
When Saturday came I was so excited. I knew I was going home. I didn’t know if the shunt was really working yet because I had so much surgical pain, but I knew I would recover better at home. I had already conned one of the health care aids into putting my suitcase out so I could start packing what I could before the hubby got there. Another routine we had become accustomed to.
Then she came in, what turned out to be my favourite nurse, with my discharge papers and follow up notes. After having so many brain surgeries I kinda knew the drill. “Stitches out in 10-14 days, cat scan and follow up appointment in 4-6 weeks. If anything seems out of the ordinary, come back in.” Those words, “Come back in.” Um, no. Hard pass! I’ve just spent two bloody weeks in Hotel Hamilton! “Come back in”?!?!?!!!!! I’d rather not. Get me home! So we said our goodbyes, hugged my favourite nurse and left.
Hubby knows that stretch of Hwy 6 and the 401 like the back of his hand. I actually think the car could autopilot if it had to. But he also knows every single bump. He knew where every crack in the road was and where to avoid so that I was in the least amount of pain for the ride. He was so careful.
We made it home in a little over an hour, to an excited puppy and ecstatic nine year old, but I think my cat was the happiest to see me. He won’t leave my side when I’m sick, so when I’m in the hospital he’s distraught.
We started making a plan for what would be my new ‘normal’. Lots of watchful eyes, or babysitters as I call them, and rides everywhere since my license was now officially suspended. Even though I haven’t been driving since November.
I still don’t know if this shunt has done the ‘trick’ as I’ve been under so much stress that I normally wouldn’t be under, but I’m hopeful. The last thing I want is another surgery any time soon.