About my Surgeries

[OraCLesofFire]

I figure since this story isn't exactly short, that I'd make a thread about it which I can hopefully refer back to whenever I end up talking about my surgery and it's effect on my life. For those who do not know, I had an acoustic neuroma crushing my auditory nerve/balance nerve, sitting on my facial nerve, and beginning to pressure my brain stem.

 

 

The Story

 

I first started noticing the hearing loss as I entered high school. It was very subtle at first, so much that I didn't even realize it existed, and I was quick to adapt subconsciously. I would find it more and more difficult to hear my friends who were on the left side of me, so I began always walking on their left without realizing it.

 

There are 2 very clear instances in which it became blatantly obvious to me that I was losing my hearing. The first, when I was walking with friends, but I was on the wrong side, so I did a little slide to get to where I could hear them, and they asked my what the heck I was doing.. I didn't even realize why I was doing it, and it was a rather frightening experience to realize that I was starting to lose my hearing. The other was when answering a phone call from my mother. I had several items in my hands, so I couldn't control the phone well, and I ended up putting it up to my left ear without realizing it. It took me a few seconds to realize that my phone was on max volume, but everything coming out of it sounded quieter than a whisper.

 

After those two incidents occurred, I made it a point to talk to my parents about it. I had a history of "attention issues" which appeared to be the affects of hearing loss when I was a child, it was more so that I become engrossed in what I was doing to the point that I was completely deaf to outside noises. When I told my parents about my hearing loss, they chalked it up to the same thing, and didn't do anything about it.

 

It was in fact my school that discovered that I had a real hearing issue. I was previously home schooled, and when coming into the school full time, for whatever reason they make it a habit to do hearing tests on all their new students. So I went into the hearing booth and caused quite a commotion when the ladies realized that I was nearly completely deaf in my left ear. They recommended I get it checked out, and my doctor told my parents that I should get an MRI to see what was causing the issue.

 

So I went in to our local hospital and had my MRI taken. I got a call back from my doctor a couple hours later, telling me he needed me to come in as soon as possible. My doctor put up my MRI on the computer screen, and it showed a Massive tumor, unexpectedly large for somebody so young. It was about the size of a ping pong ball and was crushing my auditory nerve/balance nerve, sitting on my facial nerve, and beginning to pressure my brain stem. The doctor said that if they hadn't caught it when they did, there's no saying how much longer I would have survived or what more damage it would have done.

 

Spoiler

 

So with much haste, a surgery was scheduled for me. It was less than a week from getting the hearing test, to laying on the operating table. I was in surgery for 13 hours. The doctors used what is called a "Translabyrinthine" approach when going into my head to get the tumor. This means that they essentially went in directly through my ear. They made a large incision in a "C" shape around my ear and went straight for the tumor. They removed all non-life essential things between my ear and the tumor which included my inner ear and my balance nerve. They left some of the tumor on my facial nerve because of the duration of the surgery and the frailness of the nerve. When they were finished removing the tumor, they took a fat graft from my stomach and put it in all the empty space where my inner ear/nerve had been before.

 

I still have the physical structure of an ear, but it is completely non-functional, I don't even have an actual eardrum.

 

Unfortunately, the surgery didn't go without complications. It is still unknown as to what caused it, but I developed Aseptic Meningitis directly after the surgery, which plagued me for nearly 2 weeks. I had a spinal tap taken (they claim it hurts, but when you're hopped up on morphine you really don't feel a thing), which revealed that the meningitis was not Bacterial or Viral. The surgeons best guess was that a chemical of some sort had entered my brain and had irritated the meninges, leading to my complication. All in all, recover from that surgery took nearly 2 months. During that time I had to finish my classes as I was still in school. Two of my classes just gave me an A+ on my finals even though I didn't take them, and I had to take the AP Physics exam while I was still suffering from meningitis.

 

Due to this surgery I became permanently deaf in my left ear, as well as theoretically having complete loss of balance on my left side. I also lost the ability to taste on the left side of my tongue, most likely due to irritation of the facial nerve. Because the surgeon chose to leave a part of the tumor on my facial nerve, I was forced to have an MRI every 6 months to make sure it wasn't growing.

 

Unfortunately after 4 years of MRI's my surgeon told me that the tumor was growing, and that he wanted to go back in to remove the rest of it completely. This surgery was a bit more risky, because the entirety of the tumor was sitting on my facial nerve which controls everything from the muscles that control your smiles, to the functioning of your eyelids. If something went wrong, I could have had partial facial paralysis.

Spoiler

The MRI on the left is my brain after 4 years and the one on the left was from directly after my surgery, you can see that the tumor (the white blob on the right/center) has grown considerably.

 

So this January I was back on the operating table. Same surgeon (the guy is like 70 years old, but he's one of the best surgeons for this surgery in the world, performing it on a nearly daily basis). I was much more fortunate this time, the surgery lasted a mere 3 hours. Thankfully there weren't any complications at all. I recovered nearly instantly, granted I didn't lose any body function like I did the previous surgery) and could have been walking a few hours after the surgery had the nurses let me.

 

I don't have a picture of my most recent MRI, but there isn't much to see either. There is scar tissue where the tumor used to be. I still have to have an MRI every 6 months to make sure they got the entirety of the tumor, and that if they didn't, to make sure it isn't growing. I have an MRI early this July, so hopefully it shows everything in pristine condition.

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In terms of how my losses have affected me. There was actually surprisingly little change in how I acted before the surgery and now. The hearing loss had been so gradual that I had adapted to it without realizing it. I did lose a lot of balance which affected my performance in swimming, but since I almost only swam backstroke anyways which is a stroke that relies on being out of balance, it might actually have helped me become a better swimmer (although diving off the blocks was always an experience).

--

 

 

TL;DR

I had an extremely large tumor which nearly killed me. The surgery to take it our rendered me deaf in my left ear, lacking balance on my left side, and incapable of tasting on the left side of my tongue.

 

 

[Anime]

i'm so sorry to hear that, i hope your brain can recover quickly

[Paul25]

These are so sad moments  

I hope you will get well soon from all those diseases  

Don't worry we are here to encourage you  

[HongaarseBeer]

This sounds tough to have gone through. I'm glad that everything turned out relatively fine and that you discovered the tumour in time the first time! It's also good to hear that it isn't really affecting your life, because, especially with complications, things can take a nasty turn.

 

I hope the tumour won't grow anymore (if there is still a tiny part left) and otherwise, I hope it will never return!

[mde2001]

Oh, I'm so sorry to hear about all of that, but good on you for getting through it!!!

 

Hopefully your health will just leave you alone from now on as you've been through more than enough!

[Alphagar]

Praying for you.

 

*Hugs* Hang in there.

[Zarc]

I wish you a good recover man , those moments are never easy...

[Wolfox]

wow, that's some heavy stuff. hope you're doing well