Hi all,
I had retrosigmoid surgery 8 weeks ago today to remove my acoustic neuroma. I will preface my update by saying that after I was diagnosed, I went a little nuts doing research and reading about other people's experiences. In doing so, I got caught up in all the scary risks and focused on these risks, the possibility of a poor outcome and everything that was negative. I watched all kinds of testimonials on youtube from people who had complications and I read all kinds of stories from people that suffered from complications and it really freaked me out. I guess maybe it's just a human failing to worry and focus on the negative. When you're about to go through a major operation that entails very real risks, it's hard to stay positive, especially with all the scary information that's out there.
The reason that I'm providing an update is so that others out there with an AN or awaiting AN surgery hear good stories with positive outcomes too. The mathematical chances of a positive outcome is much greater than a poor outcome and I encourage you to try and focus on the positive.
I had a pretty large tumor (4.2x3.5x3.7). To make matters worse, the tumor I had was highly cystic. It's rare to have as cystic a tumor as mine and it makes the surgery a little more complicated with greater chances of risk. Today, 8 weeks post surgery, I feel pretty much back to baseline. I'm back working and feel settled into my old pre-op routine. I've even started back at Karate. I have no facial weakness. Not only did I retain hearing in my right ear, it's actually better than it was before surgery. Before surgery, I couldn't use the phone with my right ear and now I can with ease. While I did have headaches for a few weeks after surgery, the headaches are now gone. I have no balance issues and no dizziness or vertigo. I get lightheaded if I stand-up too quickly, but that's about it. I'm riding my bike without problems and I even climbed a ladder without incident to get some house chores done. Life is normal again.
When I woke up from surgery, I was expecting that I would be throwing my guts up because that's what I had heard others say. However, I wasn't nauseous at all. In fact, one of the first things I asked for when I woke up was for my wife to go downstairs and get me a slice of pizza. I woke up absolutely starving. I mean forget the jello and get me a bone-in Rib Eye. Within a few hours of waking up, I was out of bed and went for a little walk through the ICU and had the catheter removed. My surgery was on a Thursday and they sent me home from the hospital on Monday. I did end up back in the hospital about a week later with a CSF leak. It was a tiny leak out of my incision and they tried seeing if glue would work to avoid needing a lumbar drain. I had to spend the next 24 hours lying completely flat. That was incredibly uncomfortable. The glue worked and no lumbar drain was required.
There was definitely a recovery process. I think the worst part was the pain in my neck and upper back. As part of retrosigmoid surgery, they have to cut through your neck muscles. If you're a sturdy and solid person like me, cutting through your neck muscles is not the most pleasant experience. It made sleeping very difficult and I rested a lot with ice against the back of my neck. The headaches certainly weren't fun, but they were completely manageable with Tylenol. Sneezing really sucked....it felt like my brain was going to shoot out of my head through my eye sockets. My surgery lasted about 14 hours and my side was all sore and bruised from lying in the park bench position for that long. It was really uncomfortable and quite painful. It also made sleeping really difficult because I couldn't lie on my side. The steroids they give you for brain swelling can also cause problems sleeping - so between my head, my side and the steroids I was really having trouble getting any sleep.
The great thing is that it all went away. It took some time and you really need to have patience, but it all went away. There were times that it was all very frustrating, but everyday got just a little bit better. Recovering from AN surgery isn't something I'd wish on anyone, but it really wasn't horrific or terrible. I certainly wouldn't classify it as fun, but it's totally manageable.
Today, 8 weeks later, I'm really feeling great. As I mentioned above, I have no deficits from the surgery and I didn't experience any long lasting complications. I'm back to my normal routine and I'm enjoying all that life has to offer. Now that I've been given a second lease on life, I intend to enjoy every moment and not take so much fro granted. I found that there was so much negativity out in the internet and the stories of risks and complications really scared the heck out of me before the surgery. I really hope that those of you who are reading this and facing treatment of their AN are feeling just a little less scared from reading about my positive outcome and success story. There are lots of stories like mine and there are lots of people who had AN surgery that went back to their normal lives after surgery like nothing happened. There are more people out there that have had positive outcomes than negative outcomes. The only help or advice that I can give is to just stay positive and know there are thousands of AN patients that ended up with really positive outcomes.
Good luck to everyone!!
David
