This part of the story is about my recovery at home. My doctors said I would have a 4 week time period off from work to heal and recover. After all I had read, this sounded like too short of a time, but what did I know? I would soon find out that this part of my recovery would be REALLY difficult on me.
My first concern after getting home was sleeping. I had not slept very much in the past few days, so I was hoping I could get some real good sleep at home. Mary and I, mostly Mary, did a great job cleaning up the apartment real nice before we left to San Diego so that it would be comfortable when we got home. This turned out to be nice. Because of my surgery, I didn’t have any other choice but to sleep on my back. I am not a person who sleeps on his back, so I was worried about this from day 1. I should also mention that I had an incision on my stomach that needed to heal. They took fat from my abdomen to fill the hole in my skull. Sounded crazy to me at the time (and still does).
I’ll make this part of the story short, as it was a lot of the same stuff day after day. I spent probably a week or so sleeping about a few hours per night at the most. I was beyond stressed, probably still full of medicine, and generally a wreck. I would basically spend every single night moving from the bed the couch back and forth all night trying to get comfortable enough to fall asleep. I just couldn’t do it. I think my time in the hospital really messed with my head and I was scared to fall asleep. Top that off with through the roof stress and it was a perfect recipe to not sleep.
After days of this same thing over and over I felt like I was going insane. I would toss and turn and probably fall asleep around 3 or 4AM and then wake up around 5. I remember many days laying on the couch with my eyes wide open just waiting for the sun to come up so I could start a new day. I think I ended up buying Melatonin at some point and felt like it didn’t do anything at all. After that I was out of ideas and figured I would contact my doctors and ask them if I could get some kind of sleep medicine. They agreed and I got a small prescription of Ambien. Of course, this came with strings attached. They told me to not take it very much as it becomes addicting. Oh great. Something else to worry about.
I finally decided to take an Ambien pill one night and figured why not. This’ll knock me out and I’ll sleep for 12 hours. I took it and it really put me out…. for about a half hour. lol. I was in bed and I remember very slowly waking up to some kind of light. Mary was beside me reading her Nook and the screen is what I saw. She looked over and saw my eyes open and couldn’t believe it. I couldn’t believe it either. This big powerful sleep pill worked for me for half hour. Nuts. I didn’t have much hope after that, but kept taking it and started sleeping a little more, to my delight. I ended up cutting them in half though so I could extend the prescription.
So, that was the main thing in my at home recovery that consumed the first 2 weeks. I was set to get my staples out on December 23rd in an Diego. We ended up going down to Laguna Beach a couple days before that for a little getaway for a Christmas present/keep Brian sane. This was pretty nice and relaxing (sort of). I remember one night we walked down PCH to a Mexican place to get dinner. This was one of those small places with tables way too close together, but it looked good. I think this was one of the first times I experienced being deaf in one ear. There was one time the waitress came up and asked me something on my left side and I had no idea she was there. Mary had to point her out. Lol weird. In here I also learned what a pain in the ass it was to be in a crowded room with lots of chatter. It is really hard to deal with that while being single sided deaf (SSD). It’s like the one ear can’t process all that noise by itself and everything is just jumbled and gets me bummed out. Oh well, this is life now. It was Christmas time, so I knew I’d experience much more of that soon. It was also on the walk back to the hotel that I thought my heart was going to explode out of my chest. I guess it was too much walking. That freaked me out.
We drove down to see the docs and they checked me out. Everything looked good they said. They showed me the post-op MRI scans which showed no signs of the tumor remaining and the pooling of CSF no longer there. Awesome. Then it was time to remove the staples (26 of them). I was hoping for some fancy process, but nope, it was as basic as you could imagine. Little tool to pull them out. Thats it. Luckily it didn’t really hurt at all. I couldnt believe it, but was happy. We left there and headed home and I just couldn’t believe it. I was doing great. Just a couple weeks ago I had a giant sized tumor taking over my brain and now it was gone and I was in the clear. It was hard to handle.
After going home, we spent the next 2 weeks doing daily walks, going to check out the animal shelter, doing Christmas stuff, and playing Dr. Mario on Wii. It was a lot of the same stuff over and over, but it was fine. I wasn’t supposed to do much anyways. Christmas was good and everybody was happy to see me. The get togethers were hard for me though as I mentioned before. All the noise at the same time just overwhelmed me. Mary and I both have big families. Perfect. I think I was sleeping better around this time if I remember correctly. I don’t think it was “normal”, but it was better. I was still very cautious with things. I was not supposed to lift anything over 10 pounds. I wasn’t supposed to strain to go poopoo. I wasn’t supposed to bend over to put my shoes on. Any of these things could easily lead to a CSF leak which would come from my nose, ear, or throat. The idea of that scared the hell out of me so I tried really hard to follow the rules. To fix a leak would mean another surgery. Hell no I didnt want that.
During my recovery at home I was always looking in the mirror to make sure my head looked ok. It got obsessive. I was always looking at myself. I also would ask Mary all the time to look at my head and make sure it looked ok. It always felt ok, but what did I know? I needed somebody else to look at it too and confirm things. I think it was around this time that I started being able to sleep on my stomach comfortably. This really helped me too. One day I noticed a spot of something on my pillow right before bed and it freaked me out as I thought a CSF leak was starting. I had tried so hard to avoid this, I couldnt believe it. I dabbed my incision a few times with toilet paper and it left spots on there too. It was kind of clear-ish/red-ish. I got Mary to check it out and she saw where it was coming from and took a picture. I don’t think I slept well that night. I emailed the photo to my neurologist in the morning asking for advice. He responded back that it looked ok and was probably just an internal stitch poking out or a hair poking through. That helped me somewhat but I was still freaked out.
This was getting close to the new year if I remember correctly. It was also at this time that I started getting some swelling above my ear on the surgery side. Again, freak out. I didn’t know what the hell was happening, but it didn’t seem good. Again I asked my doctor about it and he told me to keep an eye on it and if it kept getting bigger to let him know. Yikes, not very reassuring. He did tell me that swelling at that point in recovery was not abnormal, so that did help me somewhat. It was getting close to my time to return to work (The 12th of January or something). We went up to Lake Arrowhead I think 2 weekends before going back to work to visit the sister in law’s boyfriend’s place. I was pretty nervous about the trip because I wasn’t sure how going up in altitude would effect me(especially with my head already swollen) .Luckily, there were no issues that weekend. We did do a pretty long walk around part of the lake which wore me the heck out. That was scary. Lots of snow that probably wasn’t smart for me to go trough. Lot of close calls, but no falls. Luckily I got through the weekend with no issues and that felt pretty good.
After the weekend, I started to work on getting a better sleep schedule since I’d be at work soon. I was running out of Ambien, so I started to week off of them and was doing a good job at sleeping. This made me happy that I could sleep again without aid. The other really cool thing that happened around this time is that the swelling started going down and my head was getting back to being flat. Awesome. Looked like I was healing back to normal again. What a good end to my medical leave.