2nd stage BAHA Surgery 10-11-10

I had my 2nd stage BAHA surgery on Monday, Oct. 11th. This surgery Dr. Daniels implanted the post, in the anchor that was already in my skull. To do this, they cut a what was supposed to be a U-shaped flap behind my ear. Dr. Daniels put a cover over the anchor in the first surgery, so he could find it under the skin. Apparently I have an irregularity in my skull that resembles this cover very close to it. He cut the wrong spot, so now I have an M shaped flap in my head. He apologized for this mistake, and it's really no big deal. It just means there is an extra stitch or two. My hair will grow and cover this scar no problem.
The hospital called at about 11:30am surgery day, and my surgery check-in was scheduled to be at 12:30pm. They said that my surgery has been delayed, and they will call again when they are ready for me. So, I continued to not eat and try to not be grumpy (ask Shaun how that went) while I waited. And waited. And then at about 2:30pm they called, and said 'C'mon on down'. I think surgery started at about 4:15pm.
The nurse was great, as usual, and actually got the IV in no problem at all. The other two surgeries convinced me I had stubborn veins, but this IV + nurse combo was such a piece of cake. The doctor came in, said hi and looked around my skull. My mom, as usual, was eager to start talking to anyone who would listen or not listen, and said "Darin sure is looking forward to January 5th (this was the date I was scheduled to get the BAHA). Dr. Daniels asked, in all seriousness, "Why?" and I said "Because that's when I'm scheduled to get the BAHA". He said because he did the surgeries in 2 different parts, I don't have to wait until 3 months after this one, I can get the actual hearing adapter as soon as I'm healed from this surgery. This would put it closer to the end of Nov/beginning of December when I get robot hearing. So that is awesome news.
So after I met the Anesthesiologist, the surgery nurse, and I think that is everybody, I was wheeled away. I fell 'asleep' pretty much as soon as I was stopped in the surgery room, but I remember looking around and thinking "cool, this is a surgery room". When you're on these crazy meds, you tend to think pretty simple thoughts. And then, I woke up while I was still getting operated on! I remember him 'pulling' at somewhere behind my head and me being like 'ouch' and trying to move! He said, "Darin, we're not done yet, you gotta lay still". And I said 'ok', and just laid there while the skin covering my Mastoid bone was kind of jostling around from his pulling and cutting. I remember them talking about their 'golf game', but that's about it. And then I was out again, and I really don't remember when I woke up next.
Next thing I knew, I had an extremely nice, pregnant nurse giving me these graham crackers that were the most delicious snack I've ever had in my life. Even though they may have been decades old and super dry, I savored them like they were a New York Steak dinner. I was SO hungry. There may be a shortage of graham crackers at St. Mary's Hospital until the next shipment gets in.

I had to wear a headband for 2 days post-op, and it was horrible as ever. I kept repeating to myself, "This is the last surgery, this is the last surgery..." to help me not rip it off. It actually lasted until ALMOST 2 full days, so I was happy with that effort. I itched my head for several minutes when it did come off, and it was a magical moment for sure.
Now I have some gauze and a plastic cover that is attached to the post to protect it while it heals. This will come off at my first doctors appointment, on 11-19-10. There was a decent amount of swelling that went half down my neck on the right side, and discoloration/bruising as well. Overall, this surgery was less much painful and an easier recovery than the 1st stage BAHA surgery. I took off a whole week off of work, and it's been nice to relax, watch movies, and dominate in Scrabble.
In all of the trials and challenges of the past two years, I think back to all the ways God has provided me everything I've needed. From having to switch careers because of my tumor, to great health insurance, to a quiet and cheap place to live, I could go on and on.
Matthew 6:30-33
If that is how God clothes the grass of the field, which is here today and tomorrow is thrown in to the fire, will he not much more clothe you, O you of little faith? So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first His kingdom and His righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. (NIV)

1 year ago, my head got 2 new holes in it.

At this very moment, 1 year ago, an acoustic neuroma, was being removed from inside my skull. I celebrated today by sleeping in until 11AM, and I'm still in my PJ's at 12:30PM. As I look back and think about how difficult the road to recovery was, and how a year later I still have some after effects from the surgery, the thing that stands out the most is that I never felt alone. I always knew I had a great family, but they really shined when I needed them most. From Julie or Robyn enjoying the sleepless nights on a tiny, hard bed at the hospital, to mom and dad always being there during the day, to everybody else visiting and bringing cards and presents and snacks.
Being 25 and going through a stage of 'helplessness' has really taught me more than I would've if I never would have went through this. I would take it back in a second to be my 'old normal' again, but I wouldn't be as strong and as grateful if I didn't go through 'the fire'. Every time I get to go for a run, or a bike, I thank God for healing me. I've never enjoyed the fresh air, or a beautiful moon, or a pretty butterfly before this tumor like I do now. For some people, I think it takes God allowing something pretty bad in your life to make you realize how awesome He and His creation is. I am one of those people.
I wondered if I personally, would ever see anything 'good' come out of this. I think I am. I met a friend of a friend who had a brain tumor, and I think he was encouraged to see that I had a normal life after the surgery. People have told me that reading this blog has helped them get them through tough spots because they know that things can get better.
I always thought of what is the first thing I'm going to say to God when I see him in heaven. I never really knew what I was going to say or ask. Now I think I'm going to say, "I'm so glad to see YOU". And then I'm going to be able to hear with both ears, Him maybe say, "Me too".
"In the world you have tribulation, but take courage; I have overcome the world.” John 16:33

BAHA Surgery, 1st edition (June 3rd, 2010)

I had the first of two parts of my BAHA implant surgery done on June 3rd, 2010. And because I've totally neglected this blog, I am just now getting around to updating it today, July 1st. The surgery was a success, even though I was in the surgery room for about 2.5 hours, instead of the 'under 1 hour' that was told to me. The surgery consisted of placing an anchor in my skull, behind my ear, which the post (to be installed next surgery) will attach to. And also, taking this out of my skull:

The penny wasn't actually in my head; I put it there to give you an idea of the size of equipment. It's pretty incredible how small those screws are. The incision to get this out and the anchor in, was almost as long as my surgery incision. I wasn't expecting this big of a cut again, and my head was very sore. It's been almost 4 weeks now, and my head is still extra tender on the rear right side. It wasn't even recovered fully from my surgery a year ago, it still felt sensitive at times. I'm hoping that now that these plates and screws are gone, it will be able to heal 'naturally' without any extras in the way. The surgery was on a Thursday, and I was back to work on the following Monday. If people didn't notice my scar before, they sure did then! I got my stitches out 7 days post surgery, and that felt amazing. The nurse commented on how fast it healed, and then I realized why I stuck out from there typical patients: I was the only person under 70 years old in the waiting room.
I am still going to physical therapy for my facial exercises once a month. I am using a neuro-muscular stimulator. It's basically a little computer box that has 4 electrical pads/leads coming out of it, 2 positive, 2 negative. I put one set of my top lip, and one set on my chin, and let it zap away for 30 minutes. It sends electrical signal through the skin, into the nerves that connect to my facial nerve. In theory, this will get the nerve 'used to' having signal go through it again, and help it heal. The improvements have been small and slow, but there has been noticeable improvement every month. It's a test of patience to do something for half an hour everyday, and not see results for weeks, if not months. I'd be lying if I said I have not been scolded for not using it enough. Another thing of note, my right eye still does not cry. It stays naturally moist like my left eye though, so that is awesome. It's just peculiar to me that it doesn't cry. Yes, I know this because I watched '7 Pounds' last month, and that movie got me!
I don't have a date yet when my third (and final!) head-related surgery will be. I also realize that I'm posting this exactly one year from my surgery. I'm going to sleep on it, and hopefully come up with something profound to say in the morning. Don't hold your breathe....

8 months post-op

I've been really slacking off the ol' updating of progress. It really is a good thing, because it means it's on my mind less and less, and I'm getting back to 'normal' so to speak.
I started physical therapy to hopefully improve my facial movement about 3 weeks ago. She gave me a list of about 10 exercises to do, 20 repetitions each movement, 3 times a day. Trust me, staring at your face in a mirror not moving very well is a depressing way to start your day. I had a 2 week check up last week, and there is some small improvements already. I have one complete wrinkle on my forehead, and the 2nd one is almost connected symmetrically now. When I say 'small' improvement, I'm not kidding. She said it is possible for improvements to continue for years. The lack of movement is now, in my opinion, all 'superficial' so to speak. It's not detrimental in my daily living because I have 5 wrinkles on my left forehead and only 1.5 on my right when I scrunch my forehead. All functional facial movement, I can smile, close my eye etc. has returned. I have another checkup in about a month to check progress again.
The sour taste in my mouth has improved greatly in the past month. I'm not sure if it's just strictly because more time has past, or if it's a byproduct of the facial exercises I've been doing. Either way, I am very grateful for the improvement there. The constant taste of a moldy gym sock in my mouth was getting old ; - )
On Wednesday of this week I received a BAHA tester that I am able to wear at home and work. It is attached to a sweet(cough cough) looking headband, and it just in general looks awesome. But it is absolutely amazing. When you turn it on and hold it in your hand, you can actually feel it vibrate when there is noise/sound. When it's on my head, you don't 'feel' the vibration though. It's magical, I swear. It's almost indescribable how I felt when I wore it at work. I could actually have someone talk to me on my right side, and I could look toward the left and I could still hear them. As if my right ear was still functioning. It's amazing how much I really do have to compensate by moving my left side toward the talker. It was an indescribable relief to not have to constantly re-adjust my ear towards the person talking to me. It really felt like someone took a giant boulder of stress off my shoulders. I'm not exaggerating. I knew I wanted the surgery and the BAHA before the demo. But now I KNOW the surgery will be worth it. The audiologist said my BAHA will sound better than the demo also, because it'll be a newer model than the demo, and it's not conducting thru hair and skin; it'll be directly attached to my skull bone via the post, not a silly headband. I go back this week to return the demo and schedule the surgery. I'm also contemplating which hairstyle I'd like to cover up the BAHA...maybe I'll give this one a try:

Brains

My Brain, March 2009.

My brain, January 2010.

1-30-10

It's hard to believe it's been 7 months since my brain surgery. In some ways it feels like it was just yesterday, in other ways it feels like it was years ago. I'll never forget walking into Blodgett Hospital, wondering what 'it' was going to be like. It's amazing to read through my old posts, and see the progress. Hopefully the Internet will be around for a long time, because this blog would take forever to re-write.
I had my 6 month checkup with Dr. Daniels a week or so ago. Everything is healing properly, and he said I'm doing very good. He said that as I get older, I'll be at a greater fall risk because of my compromised balance system. He said it's critical that I stay fit and active as I age. It's kind of scary to think about, because I still have special moments of time right now that feel 'wobbly' and accident-prone. It's possible that my balance is still recovering and is still improving though, so that's encouraging.
I received a pamphlet on a new BAHA (bone anchored hearing aid) to look over. Now two different companies make them, but because they're heartless and only care about money(I'm only partially kidding), they make separate, different sized posts. Meaning, you have to decide which BAHA you want, and then implant that companies specific post. The BAHA's are not interchangeable. I have a demonstration on February 22nd with the Audiologist to go over the options. I did find out that while the surgery is nearly-permanent, the anchor and post is removable through another surgery. So in 15 years when something even better comes out, I could get the post and anchor removed. That would make a neat necklace.
I had a CT - Temporal bone and an MRI w+wo Contrast last Thursday at Blodgett. The CT is to find out exactly how much bone I have left, and where Dr. Daniels can put the post in. Because my tumor was in the 'large' catagory, I have more skull bone missing than most patients. Dr. Daniels seemed some what concerned about this aspect, but he said it wouldn't rule out the surgery, just make it more precise. The MRI was just for a baseline, and in 5 years I will have another one to compare it to. The thought of having no MRI's for 5 years brought quite a smile to my face.
Speaking of 'face', I have an appointment with a facial nerve specialist, Yvonne, on Monday, 2-1-10. I am a '3' on a Brackmann's facial paralysis scale, that goes from 1 to 6. My smile is a '2', but because my blink is slower on my right side, I am overall a '3'. Daniels said he thinks it will help improve symmetry, so it's worth a shot. I still feel a tightness in my cheek, it sometimes feels like it is going to cramp, similar to when your foot cramps. I don't really think about my facial weakness until I smile, then I am aware of it. My eye is moisterizing itself totally again, which is the biggest 'quality of life' improvement of all. I still have the annoying sour taste in my mouth 24/7. Again, this is not complaining, just explaining ; - ) I am so happy that I am recovered to this extent.
Life with one broken ear continues to be an adventure. I went out this morning and met the Grand Rapids Running Club for a little run around John Ball Park Zoo. I was running next to Brandon(who just happened to work with Brian as a medic, small world!) and someone would come up on the right and say "Hi guys", and I would swear it was Brandon talking, and I'd think "He is crazy, who is he talking to?". Then I'd notice somebody next to me out of my peripheal vision on the right, and have a heart attack because he seemingly appeared out of nowhere. Hopefully nobody got completely ignored by me, I don't want them to wonder, "whats up with the new guy, what a jerk." It was fun though. And about 5 degrees out. I was surprised there was about 50 people just as crazy as I am out there.
And there is my 6 month update, 1 month late.

1-8-10

I was planning on writing a nice, long, 6 month anniversary posting on the 1st of January, which is the exact anniversary of the surgery. Just didn't happen. Now, it's already the 8th of January, and it would just be lame to do a big, special, anniversary type posting. So, here's a picture of me instead. It was taken on New Year's Evening. I think the photo is quite amazing, considering all my poor Cranial Nerve VII has been through.