Thursday, July 21, 2016

NeuroPace RNS Surgery Recovery

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Isn't this a happy thought?!?

It's been two weeks since my last brain surgery.  Recovering from brain surgery is something I never thought I'd be doing, so I've been learning a lot about just how difficult it can be. I've learned very quickly how to listen to my body so that I don't find myself overdoing it and making myself worse.

My first week home I found myself with horrible headaches, which was worse than the pain I felt from the surgery.  My entire body was sore, and I spent that week laying on the couch, not doing anything but sleeping and watching Netflix.  Nick was incredible, making sure I had anything I needed.  He had to go back to work that Thursday, so my 9 year old son Brandon took over.  We have walkie - talkies and we would use those to communicate with each other whenever I needed something.  Nick would run and grab us food during his lunch break when he went back to work that week.  Without them, I don't know if I would've made it through that first week home.

It's amazing the things we take for granted.  Simple things like being able to wash and blow dry your hair by yourself...or to even do it at all!  That first week I was completely unable to wash my hair by myself.  It made me nervous because the last thing I wanted to do was make anything worse.  The right side of my head was VERY sore, and the last thing I wanted to do was touch my stitches!  Blowing my hair dry was a painstaking process.  Having long hair made it so that you couldn't see the huge scar and stitches on my head, which is fabulous, but it also made it GUT WRENCHING to dry.  My mom did it the first time, and then Nick had to do it the next 4 or 5 times. The first time Nick did it, I really wanted to dry the left side of my head where there were no stitches. I wanted to see what I could do because I was stubborn that I was so dependent on others. That proved to be more than my body could handle and it actually made me sick.  Lesson learned: SLOW DOWN!!

I tried to do a basic nail polish at the end of week one, and my hands were shaking so badly that I almost couldn't finish it!  I'm finding that I'm very stubborn through this healing process and I want to be back to 100% RIGHT NOW! I know I just had 2 different brain surgeries, but it's just frustrating.

Towards the end of week one, I began noticing that my ears were ringing.  Any beeping noises, shrill TV sounds, and even people talking at their normal voice level began to really hurt.  It felt like my right ear was clogged and my left ear was compensating for it.  After talking with the doctor, he believes that I have inflammation due to the surgery and the fact that I had an incision pretty far down my ear.  Over time it should heal as my incision heals. I look forward to that stopping soon (which probably won't happen) because it's really unnerving and annoying.  The last thing I want to have happen is some sort of permanent hearing loss.


The beginning of this week, week 2, I had my stitches removed.  Unfortunately, I won't be able to color my hair for another month, maybe two.  I'm really grateful that I'm not in public very often because my hair REALLY needs to be colored!!  It's embarrassing! I almost did it before my surgery, but I didn't know if I was going to have hair when I left the hospital and didn't want to waste the money!  I have a lot of scabs on my head on the incision site, and they will gradually fall off...yuck!



This week it's more difficult to sleep well at night.  I still can't lay on my right side when I lay in bed.  It becomes VERY uncomfortable not being able to move around at night and find a different position to sleep in.  You can only sleep on one side of your body for so long before it becomes completely uncomfortable. This morning I woke up with a sore neck and shoulders. During the day I have no trouble sleeping on our couch since it's one that kicks out, so I might be sleeping there for the next few days.  I'm guessing it's easier to sleep on the couch because my head is much more upright than at night in bed.

I'm finding myself with differing levels of energy.  One day I was feeling great and was able to clean up around the house, where yesterday after trying to once again do something fun with my nails, it was a bust and I was exhausted and didn't want to leave the couch.  Washing and blow drying my hair continues to drain all my energy, which makes me feel helpless. I keep trying to remind myself that it's one day at a time.

I realize it will take months, maybe even a year to completely heal, but I really want to be healed faster than it will actually happen.  I'm impatient because I want to do things I did before the surgery, but I just can't.  I can handle the lack of energy, but I really want to sleep like I used to, not have my incision sore, and my hearing restored.  As dumb as this sounds, I miss having the energy to do fun designs with my finger nails. I desperately want to exercise again, even if it's simply doing a basic walking DVD. Naturally, I'm gaining weight, and after all the work I've put in to loose it over the past year, this makes me sad.  

School starts the end of August.  I should be ready to go back to work and start the school year off right. My actual RNS device should be turned on by the end of August.  I'm excited for it to be turned on so we can see what it does for me.  In the end, I have to remember to...

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