Facial Movement - Squint Edition

On July 1st, 2009 I had retrosiggmoid-approach surgery to remove my benign acoustic neuroma brain tumor. One side effect of the surgery was almost complete paralysis of the right side of my face. I had slight movement of my eyelid, but could not close it completely. And that is all the movement I had at first. These are the pictures documenting the progress.

August 21th, 09.
(Notice the white in the corner of eye)

September 13th, 2009

September 20th, 2009

November 2nd, 2009
(Complete closure of eye!)

Facial Movement - Smile Edition

August 13th, 2009

August 21st, 2009

September 20th, 2009

November 2nd, 2009

3 month post-op with the Doc

I had my 3 months post-op appointment this morning with Dr. Daniels, and he may have been in worse shape than I am. He said he pulled his back out last week, so this is his first day back at work. I didn't inquire as to how he did it; hopefully it wasn't pulling at a tumor.
He downgraded me to a '3' on the House-Brackmann paralysis scale. '1' would be normal, and '6' would be complete paralysis. I was a '4' at our last appointment 6 weeks ago. He said he could set me up with a facial nerve specialist to 'speed up' the healing process, but that would require me sleeping with little patches stuck on my face. If there hasn't been any improvement yet, I would've definitely been interested, but I am happy with the progress thus far without sleeping with wires all over me. At my 6 month appointment, Dr. Daniels said I would have the same option as far as the nerve specialist goes, if I so choose.
The BAHA surgery is where things really get interesting...Dr. Daniels said that "...the soonest I do BAHA surgery is 3 months post-op, but because you're a little different than most, I'd like to wait longer." The 'you're a little different' part is never a good thing to hear your doctor say. He went on to explain that because I have TWO (news to me) titanium plates in my head, each about nickel-sized, it's going to take longer for my bones to heal. The plates are actually attached to my skull with screws, and that the plan would be to remove them when the surgery takes place. At the same time, he would screw in an anchor behind my ear for the BAHA. After the anchor heals, another surgery would be required to actually put in the post that would go through my skin. The surgery's would be done by going thru my existing scar. The surgery's are short, half an hour or so, and very simple compared to other's. A while ago, if I knew I had to have a surgery like this, I'd be very stressed out and worried. Now it's like no big deal. It's done under general anethesia and you get to leave the hospital the same day? Piece of cake.
My next appointment with Dr. Daniels is in 3 months. January 14th, 2010. Whoa, does that sound futuristic or what?

long time, no post

I can't believe it's been almost two months since I've last posted a 'physical' update...I've had progress, so here it is:

Eye = I don't use AkwaGel anymore. Days that I stay caged up in my little cavern, I barely use any eye drops as well. When I go different places, I always bring them with me and use them generously.
Facial Paralysis = My smile is getting more even, I can actually show teeth on the right side when I smile now! I still think I look pretty weird, but I think when I meet new people, they don't really think anything is messed up. When I laugh it is more obvious that the right side doesn't move as much, but it still improving. I am trying sandwiches again, but I split my lip on Wednesday, but it's happening less and less.
Voice = 100%! I can continue dreaming of making American Idol once again!
Mouth = My mouth is salivating almost equally now, no more food-loss issues(gross I know!). The sour taste is still really stupid, but a smaller issue compared to the rest.
Balance = It's hard to quantify. Sometimes I can go almost all day, and not even really notice anything, and then other days, it's more of a struggle. Certain scenarios affect it big time, like a lack of sleep, darkness, or a busy environment (grocery store, work, etc.). It's more annoying than debilitating I would say. Things like before I could just fly down a flight of stairs, and now I take one step at a time, with a hand on the railing. As my balance improves, so does my confidence in my balance and they go hand-in-hand in taking on new post-surgery obstacles.
Hair = I've had my second post-op hair cut, and both hair stylists get all weird when I tell them about my surgery. They get quiet and awkward almost. Whatever. It's just a ginormous scar on a 25 year old's head, right?
SSD = I am not 100% certain that I'm going to get a BAHA, but I am closer to making that decision. I couldn't hear everything that my little group was talking about at the 5k race this morning. When people in a group laugh, and you're like "huh, what?" is not a fun time. At work, I can usually hear what is said, but people have sat down in a chair on my right side, and scare the heeby jeebeez out of me because I never heard them sit down. Having another surgery sounds like torture right now, and I really don't want to have a titanium post in my head forever, but SSD really does stink. Does it stink bad enough to have another surgery? Hhhhmmmm...

The Bridge Run

Mark showed no mercy, winning the 5K time of 26:39, while Luke D. and Dave M. kept the same pace with me and finished in about 27:29. It was an amazing feeling, knowing that 80 days ago I was in the OR getting my tumor removed. I am so grateful. My body felt really good, the worst part was my dry eye. I stopped several times to put drops in my eye; it was a little breezy and that is brutal for my eye. All in all, it was really fun. Except for Luke's shorts. If they were any shorter, he'd have been arrested for indecent exposure.
And because running my first 5k race after surgery isn't a big enough event for one day, I took my bike out for a ride for the first time post-op. I took it to a big vacant parking lot behind my house, and of course, as soon as I get moving a little, a SUV pulls in and drives through to the back and parks. Seriously! I had brain surgery, my balance is still suspect, and a random SUV pulls into an ENTIRELY VACANT parking lot when I first try out riding a bike???!?!!! Whatever. Other than that ridiculousness, I was a little sketchy first starting off. I think it was more due to the fact that I haven't ridden a road bike (harder to balance [due to skinnier tires] than a mountain bike) in many months. I rode around a few times, and then pedaled home. It was awesome. I feel like a 8 year old who rode a bike without training wheels for the first time.
In the non-athletic-news column, my face is continuing to get more movement back. My eye, unfortunately will still not close completely. It seems to be self-moisturizing a little bit, but still gets scratchy after being outside, or in particular air-conditioned environments. I'm still wearing the eye patch at night. My next appointment with Dr. Daniels is on Oct. 1st, and I am thinking he will suggest electric facial nerve therapy (or something, I forget what exactly he called it before).
The sour taste in my mouth is still hanging on, some days are sourer than others. (Did you know 'sourer' was a word? I did not!)
I still have moments where my balance is compromised. I get a little wobbly, especially in crowded areas. I noticed it today at the race. I would strain to hear what someone was saying while walking, and watching out for cars and people, and then stepping up a curb, and all the sudden it was difficult to stay 'steady'. When you stop and really think about what it takes to do something, there is like a billion steps to a seemingly simple task. And when an ability that you never had to concentrate on before is compromised (balance, hearing, and vision for me), well, no wonder why I still enjoy sleeping 12 hours a day.

I can run!

I ran 1.17 miles tonight, in 10:43 minutes, for a 9:09 minute per mile pace. I finished in front of my house, bent over, breathing hard, and pretty dizzy. It was AWESOME. I was running 8:25-ish miles pre-surgery for 4 or 5 mile runs. I am so happy that I am able to do my favorite hobby again. It'll be interesting to see how long it takes before I'm at 'pre-surgery' fitness. There were times when I was 'wobbly' and went from edge-of-sidewalk to the other edge-of-sidewalk, and it takes extra focus to step up curbs and uneven blocks of sidewalk. Hopefully I won't regret not wearing a helmet and kneepads. (Double negative, I know! That is terrible...)

6 Week Post-op Dr. Daniels Apt.

I was T H I S close to punching the audiologist today, my patience was very thin for some reason. She asked me on the way to the test room if there have been any changes in my hearing. (She works exclusively with Dr. Daniels and 2 other doctors, so it's not like she sees random people off the street) I told her I had retrosiggmoid surgery for my AN with Dr. Daniels, and that I can't hear out of my right ear. She then asked, "So has it gotten better or worse?" I was like "HUH?" I'm deaf in my right ear! How could it get better? Worse would be, what, my ear fell off? I explained that since surgery, I'm deaf in my right ear, and can hear fine in my left ear. I really wanted to say, "Do you carry my chart in your hand to give the illusion that you're actually working, or do you sometimes read charts when you feel like it?" I understand that she probably knew she should've worded her questions better, but I still think she got off easy by me letting her ridiculousness slide....anyways...
...so I told Dr. Daniels about my week-long slide into worse balance etc., and he said it's pretty typical when you start trying to do more things that you feel worse. He said that there is no danger in the pain I feel when I try to run. He said push yourself (me) a little, but don't go crazy all out madness-style. Dr. Daniels said almost everybody gets upper facial movement back first, and then it goes down the face with movement capability. Not I, my forehead, and eyebrow are pretty stationary, but my cheek, lip and mouth are moving more and more. He mentioned that if my eye doesn't improve where I can close it better within 6 weeks (my next appt. is Oct 1), he will get me on an electric facial stimulator therapy. And if that doesn't work, they can put a gold weight into my eyelid to help it close. He said that he doesn't think either will be necessary, but it's a possibility he wanted me to know about if things don't improve.
Dr. Daniels said that the nerves are 'waking up' on my right side, and that is why I am more sensitive to the touch on my right side of my head. I was worried that something wasn't healing correctly, so that was reassuring to hear him say it's normal.
Also, they let me wear a headband type device that has a microphone on the right side that changes sound waves to sound vibrations. It then vibrates the bones in my head, and sends it to my good ear mechanisms. It emulates the Bone Anchored Hearing Aid (BAHA) contraption. It was pretty cool, the audiologist walked around the room, and I could hear her much easier when she was on the right side. The volume level was constant, instead of increasing volume when she walked toward my good side. Really cool. I told the doctor that I am not too eager to get back under the knife any time soon, but it's a possibility for the future. The surgery is about an hour and a half, and you can be awake if you want! They drill a tiny hole in your skull, and actually screw a titanium post in! Yeah right! I wouldn't stay awake for that for a bazillion dollars. No way. The post is maybe a little smaller than the roundness of a Q-tip (the shaft, not the cotton part). It takes about 3 months to heal around the post, and then you get a little microprocessor, maybe the size of Tic-Tac box of candy but a little shorter, that snaps onto the abutment. You take it off at night, or during a shower, swimming and UFC fighting etc. And the added bonus is I would respond to people only when they called me 'Robo-Darin'.

s t a g n a t i o n

After re-reading my last post from August 1st, I would've thought I'd be doing all sorts of normal stuff by now. Not the case. This past week was especially difficult, as it felt like I regressed by about 2 weeks, as far as balance and dizziness goes. I started feeling back to 'normal' or so two days ago, and today it feels like I'm back making small progress again. I asked my OT about the regression, and she didn't have any ideas other than it just happens. Some days you feel good, some days you don't feel good. She reminded me that compared to 3 weeks ago, even with not feeling good, I am still overall doing better. After a few days of being more unbalanced, and dizzy, it becomes a mental challenge to stay positive.
I just want to be 'normal' again, and jump and run and play with the other kids. I'm sick of getting 'wobbly' every time I turn my head. I'm sick of my eye getting dry and hurting every time it's a little breezy. I'm tired of biting my lip every time I try to eat a sandwich or pizza. I'm sick of trying to make stupid 'I'm a pirate' jokes because of my eye patch. I'm tired having the room spin every time I climb into bed. I'm really sick of this gross sour taste that won't go away. I'm tired of having dried blood in my right nostril. I'm sick of saying 'pretty good' when people I don't know very well ask me, "how are you?"
I am glad I am using less eye drops than I was at first. I am happy I can walk 2 miles unassisted. I'm glad when I wake up, my bedroom does not spin. I'm glad that my left nostril is blood-free. I'm happy that my face is continuing to get it's movement back. I'm happy that I only have 'pressure' but never a headache. I am glad I am able to drive again. I'm glad my arm hair is growing back in. I'm glad I have family and friends that have helped me so much. I am glad God has provided health insurance for me. I'm happy that I have a job to go back to. I'm glad I'm able to use my bike trainer. I'm glad I had great doctors, nurses, and hospital staff. I'm happy I like food other than sandwiches and pizza. I'm glad Hagen-Daaz tastes so good. I'm glad I could turn this post into a positive one, so people don't call me 'Debbie Downer' from now on ; - )

One Month, Post-Op

It's amazing where I was one month ago, and where I'm at now. I drove for the first time today! It's not something that I want to do a lot of yet, but I definitely feel like I drive more competent than at least half the crazies on the road. I also ran for the first time! I ran a hundred, maybe two hundred feet at a local high school track. It felt awesome! Ok, so it was a slow jog, but I'm calling it a run. My legs are actually a little sore from yesterday, with two over-one-mile walks, and some time on my bike trainer, so I just wanted to see if I could run and not fall over. There was some 'wobbly-ness', but nothing close to falling over. (Funny thing about the word 'wobbly-ness'. People who have had this surgery also describe this feeling as being 'wobbly'. Dizzy isn't quite accurate, cuz it's not like the room is spinning. I'm not sure exactly what 'vertigo' means, so I can't call it that either. It feels like you might fall over when this feeling is more severe, but I haven't yet fallen over. 'Wobbly' is the word of choice.)
Anyways...here is a rundown of all my physical maladies. I am writing this not to complain, or anything like that. I am so happy with my progress, and want to record how I'm progressing for informational purposes only.
Incision = It's looking great! I have a tightness and tingling sensation from my incision to above my ear, which I didn't notice until this week. I still put Aloe Vera on the incision sometimes, but not as much as I should. You know what they say, 'out of sight, out of mind'. Also, chicks dig scars. Or maybe thats just something Luke told me...
Eye = I still use the gel, even though the nights I don't put any in, I can't tell a difference in the morning. I think this means the eye is closing tighter at night, giving it the proper moisture it needs. The eye patch still gets alot of use, it really helps when I'm outside to block the wind. And my nephews think it's cool to have a pirate for an uncle. Eyedrops are still used a few times a day, but it seems like I need them less than in the past.
Facial Paralysis = A true test of patience. I can see a tiny bit of movement at the corner of my eye, and cheek. It was at zero percent movement, so a 'tiny bit' of anything is huge. It means some signal is getting through to my face from my brain, meaning the prognosis of more signal getting through is very, very high. My eye seems to shut a little tighter as well, which is awesome.
Voice = This is by far the biggest improvement in the past few days. I would say it went from 60% to 95% recovered in the past 4 days. This was an really unexpected issue post-op, with even swallowing being very difficult. Now, I am able to take huge gulps of beverage and not cough for hours. I am so glad to have my voice back.
Mouth = My mouth is still extra dry on the right side, and due to some facial paralysis, food still gets 'left behind' around my gum line. I bite my lip occasionally as well, and I noticed it's always while I eat a sandwich or pizza, so I shy away from those foods. I have gotten a little bit more of my taste back, but still have a lingering metal flavor that I haven't shaken yet. I swear they left a scalpel in there somewhere...
Balance = I've moved from standing and doing things, to walking and doing things for my Occupational Therapy. It is really cool to stop doing different exercises because they are no longer challenging, and trying harder things. Try closing your eyes and standing on one foot. Ok. I only found 2 people who can do it so far. My Occupational Therapist said I may never be able to do that. I told her when I do, I will stop by to show her.
Hair = Looking in the mirror this week, I noticed that the hair on my left side is longer than my right side! How crazy is that!??! I know my right side IS growing, because where they shaved for the incision is definitely growing in. But it is a step slow compared to the left side. I'm hoping this is a bizarre temporary thing. What a weird side effect.
SSD = Which stands for 'Single Sided Deafness'. Apparently it's so common, there is even an acronym for it! It's true, I didn't just make SSD up. So far it's been pretty easy to adjust to it. I mainly exist in a nice, private bubble right now, so it'll be interesting to see what it's like when I start doing more things, e.g. working. I can easily hear a conversation, but if there is background noise, I have to strain a little bit. My tinnitus and 'full-ness' feeling have definitely subsided, tinnitus is still there, but it has gone down to pre-surgery level and maybe even lower than that. It is still odd to me that when I itch my ear, I hear nothing. Or when I'm in the shower and water shoots right in, I hear nothing. It really is strange.
If someone would have told me three weeks ago that I would feel like this on August 1st, I would have said, "you mean 2010, right?" I was using a cane to get around three weeks ago, and today I drove, walked about 2 miles, and ran a little bit. It is amazing.

Day 20

The physical therapy session last Friday was really cool! The machine had a platform the size of pillow, and the PT would 'release' the platform that I would have to balance on for 30 seconds at a time. The machine also had cartoon-ish mountain backdrop, so that the room I was in was completely out of my vision. The PT would then release the platform, and also make the mountain's move. This would totally make my two good balance systems (Muscles & Joints, and Vision) out of wack, leaving my ears to try to control my upright status. Upright status was compromised. Fortunetly, I was strapped in to a full body harness, which was clipped in at both shoulders to prevent falling down. The PT ensured me there were no hidden cameras to humiliate me at a later date.
One of the more fun tests/workouts that we did was very video game-ish. I controlled a little guy on a computer monitor, taken straight out of the Atari days. As I moved the platform beneath my feet, a little stick figure-guy moved accordingly. The goal is to keep the little dude in a small square box on the screen. I would've done that all day long, it was fun and challenging. The machine had a 'looseness' setting of the platform as well, making the difficulty level adjustable as well.
After about 25 minutes of torture, I mean testing, the machine spit out 2 sheets of graphs and charts. The PT went over the results of the testing, and said in three weeks, we'll do it again and see how much I have improved.
I also received about 30 minutes worth of balance exercises to do, in addition to the two walks per day. It is really nice to have something I'm supposed to do. It breaks up my eating, napping, reading regime quite well. I have PT twice a week for the next three weeks. I am thinking I am going to run on August 1st. I probably won't inform the PT of this...I'll tell her that I sleep walked and woke up in the street if running doesn't go well ; - )

2 weeks Post-Op

It's hard to believe its been 2 weeks since the brain tumor resection. The rundown of symptoms with improvements are as follows -
Scar = Looking great, feeling a little 'tight' still.
Tinnitus = Virtually no change, fullness/under-water feeling, with constant buzzing that changes to a ring sometimes. Still loud and irritating.
Face = Ben and my parents think they could see a tiny movement at the corner of my mouth while I talk. I am unsure. Eye still doesn't close quite all the way, burned like crazy in the shower this morning. (Stupid face wash)
Walk = Getting better everyday! I'm still amazed at how awesome the human body is. Steps are the biggest improvement from a day or two ago. I can walk up them slowly without a handrail.
Voice = Hasn't seemed to change in the past few days. It's still difficult to raise the volume, and it is physically tiring to have a conversation more than a few sentences. Swallowing has improved quickly though, I would estimate 85% recovery there.
Headache = Still none! Awesome!
Over-all = I am so happy with the progress. Going from needing help to go to the bathroom, to going for a walk around the block by myself in less than two weeks is incredible. I am very grateful for the progress, and am looking forward to getting 'back to normal', no matter what it's going to be like.

The big adventure today was my first physical therapy appointment. It was scheduled at 2pm, so I was afraid that I'd miss my nap. And I did miss it. I will not make that mistake again. I need my nap. I just tried to go for a walk around the block, and turned around at the end of the driveway. No nap = Yes dizzy. Back to PT, it was really beneficial. It's strictly balance related; unfortunately, she's not going to turn me into a super-athlete. She said we have 3 balance systems: Ears, Muscles & Joints, and Vision. She said it's 'nice' that we know for sure which one of mine is causing the chaos, we already know that much. (I don't remember her name, for now she will be 'she') She had me stand on a cushion and balance, taking away my 'muscles & joints' balance system. It was difficult, but doable. She then had me close my eyes. I lasted about 1.5 seconds, and grabbed the wall. She said it was a 'kind of mean' test, but just wanted to see the severity of my balance problem. After about 40 minutes of different walking, and balance moves, the day came to a close. I was definitely getting fatigued toward the end, it seemed the dizziness came on quicker at the end of the session. She said that mild to moderate dizziness is what we want, it means my brain is learning to function with one good ear. I have appointments twice a weeks for three weeks. I also got a list of balance exercises to do twice a day. I am excited to have a plan now, the PT is going to be time well spent.
The PT also said that they have a machine that they 'strap' you into, and it will gauge your balance system. It also has the ability to give people balance workouts as well. She said that she waits until the second time to test people, because it can be pretty intense. After three weeks or so, you take the same test and you can chart exactly how much you've improved. It sounds really neat. My next appointment is Friday, so hopefully I can try it out then.
I also received my new-to-me bike trainer in the mail today! It's sweet, and definitely contributed to wearing me out today. It 'holds' the back wheel of your bike, so it's the exact same set-up as riding outside only minus crazy drivers and the potholes. I used it for about 2 minutes, and I started to get pretty dizzy. It is awesome though, I love it. I'll have no excuse if I get fat this winter, now I have a bike trainer and a treadmill. Let me know if you see a good deal on an olympic-sized pool... ; - )

Newflash

I just changed my blog to a public blog, no more signing in to read it! Just wanted to let everybody know.

Post-Surgery, Day 12.

I have started to email people separately about the recovery process, and it isn't the most exciting writing about the same thing different ways to everybody. I will try to post more stuff on here from now on, as far as the recovery process. Pre-surgery it was a little bit therapeutic to write about things that were always on my mind. Now that life has shifted to the recovery phase, it's less enjoyable activity, writing about progress, etc. Just wanted to you to know that you're going to have to hassle me to keep these updates going ; - ) Thanks so much for all the cards, prayers, notes etc. as well!
Yesterday was a pretty huge day! I did many 'firsts', went to Big Bob's Pizzeria for lunch, and went to Family Fare! I couldn't wait to get home and take a nap. It's amazing, two months ago, I ran a half-marathon(13.1 miles) and now I eat lunch and am exhausted! I also made my own salad for dinner, and didn't cut any finger's off. It really is incredible the 1,000's of tasks that you accomplish every day, and never think twice about doing them. Putting on my boxer-briefs is still the most dangerous task I do every day. Taking a shower is also nerve-racking; visions of falling over, getting a concussion and drowning in an inch of water are all too real.
Grocery shopping was also quite the adventure. Having a big, sturdy walker in the shape of a grocery cart was fun, for a minute or two. Then, my legs started wanting to move faster than me head was ready. I wish I had a video camera follow me around, because people had to wonder what kind of person gets drunk in the afternoon and then goes grocery shopping. I definitely could not 'drive' my cart in a straight line. I also wondered how I just spent 50$ on like 3 bags of groceries! Good grief it's summer! I thought fruits and veggies would be cheaper than that!
There is no change in my facial movement so far. I am doing my 100 facial exercises at least twice a day. This is about double what Dr. Daniels told me to do. If I never get movement back, my good side of my face is going to be super tone! My scar, I've been told, is looking really good. I alternate Aloe Vera and Antibiotic ointment, in the morning and at night. I still have yet to look at pictures of it, I'm not really into blood and guts. Someday...just not today, and probably not tomorrow. ; - )
I've been sleeping GREAT being at home, about 11 hours straight last night. I am totally getting used to waking up naturally. Alarm clocks are evil, evil devices. I would've slept even longer, but some jerk neighbor decided to mow their lawn at 11AM this morning ; - ) Who gets up at that hour, seriously!??!? What a nut job.
I took my first walk outside this afternoon. I staggered my way one block down Michigan Ave., walked down 1/2 block down Baynton, and returned. I noticed that I leaned toward my right side, I had to conciously 'steer' left. It was pretty slow and methodical (No cane!), but a huge success considering 12 days ago people were horsing around inside my skull. I am REALLY REALLY REALLY looking forward to getting back to being physically active. My goal for '09 (before tumor was found) was to be in a triathlon. I still may be able to squeeze one in if I go south at the end of the year. I may substitute a running race in the fall though. That is going to be quite an amazing feeling.
The left side of my body was feeling like it got steam-rolled, but is improving pretty well. My heel stopped aching, and my left calf isn't quite as stiff. My hip is still really tight, and painful when I stretch it. My forearm has about 6 inches of bruise area on it, most likely from the two IV's that were in for about 6 days. I think all the soreness was due to sleeping/sitting on my left side for a week straight, during the hospital stay. All little friendly reminders of being at the hospital. My incision area still has a tightness feeling to it, but it doesn't 'hurt' really. I did sneeze for the first time two days ago! I thought for sure my brains were scattered all over the place behind me, but miracously, they stayed put. It took several minutes for my heartrate to return to normal, it honestly was kind of scary.
Mark is bringing some of the boys over in a little bit, so I'm going to rest my eyes to prepare. Have a nice day!

Tumor free is the way to be!

I'm back!!! I hurt!!! ha ha. I feel like just writing 'the end' and finishing this crazy chapter of my life. But, there is still quite a few loose ends, and I'm only 25(!) so who knows what else is in store? Back to the present...
...It's my second day at my parents home, went to my house last night to sleep and came back to make sure my mom was doing alright today ; - ) She was doing great, and made about 25 blueberry pancakes for me. I finished 3, I think. Luke ate the other 22 after getting up about 2PM.
It was really nice of Andy and Julie to write about things while I was under, but I've forgotten some things, and reading about them reminded me of them. One of the funnier things, is an impromptu, unscientific hearing test is rubbing your fingers together an inch from your ear. If you can hear it, you have hearing in this side. I did this in ICU while I was still heavily drugged, and Andy thought I must've thought I was cleaning my ears or something. I actually remember doing this test to see if I could hear. I remember not being sure about the results of my testing. It was told to me later in the week that my hearing nerve was cut during surgery, resulting in single sided deafness.
Being SSD so far hasn't been a problem. I have a fairly intense ringing, and a buzzing that is always loud, and sometimes louder. I have read that this typically subsides to a reasonable sound level around 4 weeks out. It's really low on the totem pole of post-op issues, the bigger issues I'm dealing with right now are...
...aarrgghhh! I wear a sweet, clear eye patch at night, and through out the day to keep my eye moist. I can close my eye almost all the way, but know it's not completely closed because it stings in the shower. Eyedrops are my best friend every couple of hours, and I put in a lube every night that helps keep it closed, and extra moisturized. My facial movement hasn't changed, it is still set in stone. It's like half my face thinks it's watching a Sandra Bullock movie, there is zero emotion. The doc thinks it's only temporary, saying it will take 6 weeks or 6 months to improve. Keeping my eye healthy and lubed is really priority numero uno. I've talked to people that have made custom sunglasses that help protect their eye from wind and brightness.
The other un-planned for issue is my vocal chord weakness and propensity to choke on liquids. It's improved already, but my voice is fairly weak. It takes extra effort to push air out when I talk, to get volume with my speech. I was on a weird 'thick liquid' diet for 24 hours, they put in a gelatin like substance to water or juice that made it think like a jelly. As gross as it is, it stopped me from coughing. Coughing really irritated my incision area. This issue I think will be resolved within a week.
I am so impressed with the quality of care at the hospital. The rooms were just opened about a month ago. The food was better than ok. But really what made it stand out were the nurses. Every couple of hours they check your vitals, and they'd always ask if they could do anything for you. Every time I can remember, they were prompt, kind, and had a smile. That makes a huge difference when you start to wonder if you will be able to walk again.
It was also amazing to have a willing family member to sleep in a rickety, small chair by your bedside for a week. (Seriously, they must be the chairs from the old rooms. They must've blew their budget on the flat screen.) Mom, Julie or Robyn stayed with me every night, even though I told them the typical guy answer of "I'm fine". It was nice to have the company, considering the little amount of sleep I did at night. Not sure if anything that I said while under a morphine-induced will come back to haunt me...only time will tell.

Chillin' in the Ghetto!

I think I'm getting closer to being out of a job, with updating Darin's blog. He was on his laptop tonight, said he got about half way through the blog updates and needed to rest. But when I walked in tonight I was impressed to see him up in the chair and using the computer!

I think the "big" event of today was the involuntary wax job he received on his arm... with taking out the last needles for his IV... and all the tape involved in that... he literally has no hair on his arm in the spots where the tape was. He said that it hurt really bad! But he said it's nice to not have it in anymore...

He took a walk around the "block" earlier today, all the way around the loop in the wing. Which is rather impressive that he made it that far, since only yesterday going to the bathroom & back was quite enough for him. He said that he was told he has to take another walk today, and today is not over, so he's "resting" for a bit and plans to get up and do that before calling it a night.

Since the weather is so nice we thought maybe tomorrow would be a good day for a field trip down to the garden.... if he's up to it Ben offered to race him through the halls in a wheel chair :)

I was just about to close, and say that I feel like I'm lacking any funny stories to tell you.... but I was mistaken....

Darin has continually had issues with being too tall for his hospital bed and it's irritating that he can't stretch his legs all the way out. One of his previous beds was able to extend out which was nice for him b/c he could stretch. He was all scrutched up tonight and I asked him if he wanted me to go and ask the nurse if it could extend (this was only after Robyn & I tried to do it ourselves).

The nurse came in and looked at it, and didn't come up with any solutions, except to take off the end of Darin's bed! He laughed and apologized for the "ghetto-ness" of it, but he said this bed doesn't extend, but this at least fixes the problem. He said: "this is how we roll in the ghetto of Blodgett". It was rather comical...

You might ask yourself.... How many Nicholls does it take to figure out how to extend a hospital bed? More than two.... How many nurses does it take? Just one - but he has to be from the hood! :)

Day #3

Darin was able to move to the other side of the room, by the window, which has offered more privacy, and he now as a "new" roommate. Who seems content to be quiet, and rest, which is great!

We are on the 4th floor and had a great view of the fireworks. I asked Darin if he wanted to watch, and he said that he would next year.

He's had a busy day, I'm amazed at all he has accomplished. He got his IV removed and with the help of a walker can walk himself to the bathroom and back. For only being three days after surgery he's doing very well. The dr. did remove the bandage today, the stitches are towards the back of his head, from just above ear "level" down to aprrox. two inches below the bottom of his ear. Once his hair grows back it should cover most of it.

The doctor expressed confidence again today that he thinks his facial movements will return in time, I think it's an encouraging thing for Darin to hear everyday!

New Address: 4th Floor

Darin was moved to the fourth floor today and has been tucked in for the night. They just came by to check his vitals, and was able to locate his eye patch. Still waiting for the ointment to be put in his eye, I'm giving them 10 more minutes before I go ask for it again.

Darin ate a little bit today, and was made to sit up on the edge of his bed with his feet over the edge. I think between this and being jostled around in the moving process, it took a lot out of him, and has taken awhile for him to relax and get the pain back under control. He seems to be resting ok for now.... probably till they come back in with the ointment...

The doctor said the bandages will probably come off tomorrow. And they will encourage him to move around more, I suppose this is what he "needs" to do, but he surely doesn't seem ready for it, he's still really out of it, and has been through a lot. Hopefully he'll be able to get some rest tonight.

Accepting Applications...

For a quiet roommate, one who doesn't snore, keep the lights on while sleeping, or watches tv with the sound on. Looking for someone who likes to read teleprompters, goes to bed early, and doesn't have many visitors. If interested please see the nearest nurse, maybe ask for your name to be put on a "list".

Do you want fries with that?

It was decided that I would stay with Darin tonight in the hospital, so I went back to Mom & Dad's to change & pick up a few things. Luke got home from work so he road back to the hospital with me. On the way I stopped at subway and picked up a sandwich, Luke said he'd already eaten at subway at work today and asked to go through the drive thru at Wendy's.

We pull in & are waiting in line and I ask Luke what he wants, and he said that I won't remember it, and he'll tell me what he wants when we get up there. I pull up to the window and Luke tells me "A crispy chicken sandwich with mustard, instead of mayonase", so I repeat this to the speaker. The speaker asks me if that's all?

I look at Luke and he adds "a five peice chicken nuggets with honey mustard sauce", so I repeat this to the speaker, "is that all?" the speaker asks in return.

Luke adds "a jr. bacon cheeseburger" and at this point I start laughing b/c I think he's joking... but he's not, so I tell the speaker that he wants a "jr. bacon cheeseburger, and I tell him that's all".

I'm still laughing as Luke says "no, that's not all, I want a small chili too!"

I then received a lecture on how his meal cost only $4.26 which was much cheaper than my $5 foot long. Luke then proceeded to down his chicken sandwich with mustard, five chicken nuggets, a jr. bacon cheeseburger, and a partridge in a pear tree in the five minutes time it took us to get to the hospital. As we pulled in he was just about to dive into the chili and I tell him to wait till we get up to Darin's room.

We arrive and Darin is just being taken down the hall for his cat scan. So Luke explains his story of all the food he's just eaten, and the better deal he got then me. Andy was in full agreement that he too, could eat the above mentioned menu items in one sitting (much to Robyn's dismay).

See, Darin, all this excitement that you're missing out on?

I was impressed today that you mentioned that tennis was on all this week, and I asked if you wanted me to see who was playing right now, you said "sure" but I think it was more to appease me b/c I don't think you truly cared at that moment. I turn the tv on & Robyn and I are trying to make out exactly who is playing b/c the screen if fuzzy and we can't read it. You were quick to inform us who was playing, and who had just won. You'd make Dad proud! :)

Well, just so you know, I'm about blogged out for one day... so will let this post about nothing come to an end. (You're welcome!)

Day #2

Well, it's almost midnight on day #2. Darin has had a fairly good day, and is resting at the moment. The doctor came in this evening, and explained a list of things. I've copied the following from what I posted on: caringbridge.org/visit/darinnicholls

Dr. Daniels arrived around 6:30 tonight and talked to us. We really appreciate him, as he takes time to answer questions etc. He talked to Darin and asked him to make some "faces" for him, and looked over his chart. Darin was supposed to have a cat scan done earlier today, which wasn't done yet... so he talked to the nurse to make sure that he got one done tonight. He said the results would be in tomorrow, but said that he expects everything to be fine with it. If there was a problem he said there would be other signs, and so he thinks everything should be fine.

He explained again for Darin how the surgery went, and that he thinks they got 99.9% of the tumor out.

The dr. explained that he expected Darin's right side of his face to be weak, due to the stress that was placed on that nerve. But he did not expect it to be quite this weak. The right side of Darin's face doesn't have a whole lot of movement at this point, he is able to open and close both eyes, the right eye seems just a tad bit delayed when he closes it. The doctor said he "tested" the nerve just before closing up surgery and it reacted fine to the test, and so he's not sure why the lack of movement is this extreme. But he said that he is optomistic that Darin will regain the movement, he said it could be 6 weeks, it could be 6 months. He told Darin to do 20 repititions of closing his eyes really tight, then smiling 20 times in a row, then frowning, and a few other "faces". He said to do this twice a day, Darin asked if he should do it more? The Dr. said that would be great. He explained that everytime he does that his brain is sending a signal to his nerve to move his face, and so it will strengthen that nerve and in a sense re-train it to work correctly again.

Darin has not struggled with being nauceous (someday I need to learn to spell that word correctly) today, and has not been dizzy. Dr. Daniels was suprised at this b/c he said he should be dizzy all the time, feeling like the room is spinning. The balance issue is a little more complicated to explain, the Dr. said that he has not had a patient that hasn't been throwing up all over the place the first 48 hours b/c they are so dizzy. He said that Darin's ears normally send signals back and forth to each other, telling the body to balance itself. Usually after this surgery, and the fact that the hearing nerve was cut, the "good" ear will still send the signal but it will have nowhere to go and it will bounce back to the "good" ear. Possibly this is not happening with Darin, the signal is being sent and he said maybe there are remaining fibers there that are "accepting" the signal and causing him not to be dizzy, etc.

But the Dr. said he's never had this happen before so he doesn't know for sure if that's the case, but he said that's the only possible explanation that he can give for it. Or maybe God has had something to do with it???? :0)

Darin had a few visitors this evening, and the visit with the doctor was tiring for him, and then he was off to the cat scan... the poor kid is wore out. He's currently sleeping, throwing in a good snore every once in awhile for good measure.

THANK YOU for your prayers & notes, they are an encouragement! The doctor said he'd be in sometime tomorrow, probably in the afternoon and will most likely discharge Darin from the ICU, and he'll be moved to a different floor. The Doctor said it's noiser there, and the possibility that he will have to share a room. Hopefully he'll be able to have a private room tomorrow.

The Next Morning...

Darin had a mostly uneventful night, and slept on & off. He looks good, he's still a bit swollen, and the bandage on his head is still there. He was able to get cleaned up this morning and I think he feels better after that.


The nurse came in with some meds for him, we asked what it was. He said it was a steriod to help keep the inflamation down in his central nervous system. He said this drug works well specifically for this and doesn't cause other side effects. As he was putting it in Darin's IV he told Darin that he was giving him a steriod. Darin asked if it was the kind that would make him stronger, because he was pretty scrawny. The nurse smiled and said no, but that Darin should ask the doctor when he comes by, and to let him know that it wasn't working and to give him some of the other kind! :)


After they gave cleaned him up, Darin noticed that his leg pumps weren't working. He said they forgot to put them back on, we checked and they were on his legs, just not turned on. I thought that maybe we could just give him a few minutes break from them since he's seemed so irritated by them. But Darin brought it up again, and I asked him if he wanted me to ask the nurse to turn them back on, and he said yes. I told the nurse and he came in and said that nobody ever asks to have them turned back on! Darin's such a good patient... irritating or not, he knows it's good for him.


He seems to be resting comfortably for now. I'm keeping myself occupied by watching his heart rate which is currently holding steady at 58 & 59, last night it was up over 100 at points when he was restless. Sleep is a good thing.

Mullet, Hat, or Mohawk?

Darin was moved to ICU, and is resting somewhat comfortably. I've explained some details on the caringbridge website, so you can check that out for more details (for the sake of not repeating myself) at www.caringbridge.org/visit/darinnicholls

He is able to respond to our questions, mostly with a shake of his head. He's rather irritated with the leg "pumps" and is moving his arms & legs around. His vitals continue to be good, and will be checked frequently while he's in ICU.

The plan is, that if well enough, he will move to a regular room sometime after the 24 hour mark.

Most everybody has gone home for the night, Mom & Julie are planning on staying the night.

Andy took quite a few pictures tonight, we'll wait to post them till Darin can give the ok, or when he's feeling up to it, we'll let him do that.

For having brain surgery, Darin "looks" good. His head is bandaged, and he's sporting a new hair cut, although we can't see it yet. It was suggested earlier today that he should have gotten a mohawk before surgery, or possibly that he grows a mullet afterwards to hide the scar. Maybe a hat would be an easier option for awhile :)

I'll post more later, but check out the caring bridge site for more details of the "medical" side of it.

Thanks!
Julie

99%

The doctor just came out and said that Dr. Daniels is putting the final stitches in and they removed 99% of the tumor. He said that they are very pleased with the outcome, he said it was a difficult procedure, but things went very well.

He expects Darin to be in ICU around 8pm and that we could see him at that time for a few minutes.

He will be in ICU for at least the first 24 hours, and most likely in the hospital for about a week.

Thank you for praying!!!!!!!!!!!

#5339

There's a big tv screen in the waiting room with each patient listed, Darin's number is #5339, it shows updates about him.... he is currently "In Surgery".

Hoopla & Such...

It's 5:33 in the afternoon, we've been at the hospital for 11 hours. Darin is unaware of all the family "hoopla" that has been taking place today. To give him some "good" reading when he's well enough to care.... here's what we are all up to at this moment:

Dad has recently asked "what direction is north?"

Brian almost got ran over on his way to the hospital.

Morgan beat your score on the "bubble wrap" game.

Michael Jackson died last week, and we are getting hourly updates about his will on the news.

Barak Obama is still president.

Luke's goal is to get 100 friends on facebook by the days end.

Collectively the Nicholls Family has spent over 273 hours on the internet this afternoon between everybodies laptops, and cell phones.

We've asserted our position as the dominant presence in the waiting room.

We've picked up a few random kids to add to the mix.

Ben has successfully created his own "family guy" episode.

Luke chatted with Kenny who is stationed in Iraq.

Luke is fairly certain he's contracted an "eye" tumor from stairing at your I-Touch too long.

The choke hold was succesfully applied to Morgan, and she passed out. Apparantly her neck isn't as big as Mark's.

Julie has given up on her Sudoku due to lack of sleep and brain power.

Morgan woke up from her coma and succesfully beat the pulp out of Luke.

Brian looks like a model from all of the new clothes Beth gave him.

Andy is attempting to study, but failing miserably with all the distractions due to animal planet that's on the tv, that just asked the question: "Do you want a couple dozen leeches ringing your doorbell?"

Dad has had the best hospital parfait of his life.

In closing, we have found enough to keep us occupied, amused, and at least consistently keeping up with the typical "hoopla" that can be found at any Nicholls' gathering.

For supper we are discussing having ice cream, blueberries, and milk. We are waiting on you for the oreos.

Ta, ta, for now...

Mid- Afternoon & Still Going Strong

The nurse just came out and said they found not just an oreo, but some ice cream too!

She said the doctor has removed most of the tumor, and there's a little bit more to go. Then Dr. Daniels will take back over and start wrapping things up. It'll still be a few hours, but things are looking good so far.

Update #1

Dr. Daniels came in and said that things are going fine, that Darin is doing well. He said that the other doctor was starting to work on removing the tumor. The surgery started at 10am, and Dr. Daniels came out at noon with an update.

He said it appears the tumor is a little sticky, but it's too soon to tell how it really will be. He said he thought they'd be done around 6pm, but said it may take longer.

The family currently has taken over the waiting room with multiple laptops, cell phones, I-touch, gameboys, and lots of hoopla!

Thank you for praying.... will post more when they come out with another update.

"Doris" is in Surgery!

This is Darin's sister Julie, he has relinquished his password and all rights to his blog while he's in surgery. (Which is very trusting of him, I'm accepting bribes for the password... Mark so far is the highest bidder).


We arrived at the hospital this morning at 6:30am, we took a short tour through the hospital trying to find the right room. A pastor from church prayed with us, and then a nurse came in the room and asked for "Doris". We all looked around at everybody in the room and nobody got up. The nurse looked back at her paper and said "oh, I mean Darin".


Darin did very well, he's a trooper. He answered patiently every time somebody asked him his name, or his birthday. Apparantly they wanted to make sure he didn't forget. We broke the "only two people at a time" rule, only a few times :)


They asked Mom to mark his right ear with a marker, and when the doctor came in he initialed it, so I guess they are going to get the right one!


Our only point of concern was when the surgeon walked in the room, he had on an Ohio State surgical cap. Darin commented on it, but the surgeon didn't seem to mind. Right after the doctor left, someone came in and started up his IV, and we waved goodbye as they wheeled him down the hall. Hopefully by the time he reached the room he was fast asleep.


The surgery will last approx. 8 hours, and the doctors & nurses will come out and give updates as they can.


Thanks for your prayers for my little bro, he's my favorite second to the youngest brother that I have, I couldn't ask for a better one!


I have created a CaringBridge webpage for him, so more people can access updates than just those that have subscribed to his blog. Feel free to share this link with those that might be interested.


www.caringbridge.org/visit/darinnicholls


That's all for now....


Julie

(staring blankly at 'title' section)

I feel like I hit a writers block. Usually I can just write and write and write, and it comes easy. I typically enjoy updating the blog with the various news of the schmumor. Not yesterday. And not today. Tomorrow doesn't look good either. (time elapsed for first paragraph = 1/2 hour)
I am nervous. The butterflies in my stomach have been eaten by angry gorillas. What are you supposed to do the last couple days before brain surgery? Last week was fun, cruising around Kentucky, Georgia, and South Carolina. Losing track of 'the countdown' was easy. I should've stayed on vacation until Tuesday.
I'm not scared. But I'm worried. I know God is in control. But things have happened that I would have preferred not to happen. I have been looking forward to surgery, finally being able to put it behind me. Now that it's so close, it's scarier than I thought it would be. (I just said 'I'm not scared', but maybe I am a little) I know God brings good out of evil.

We know that all things work together for good to those who love God - Romans 8:28

Because of other circumstances in my life, I recently have been in the process of getting on COBRA insurance. A slight debacle which I won't go into all the details (it'd take an entire new blog or two, trust me). I sent in a check to be covered for the next 3 months, and I looked on their website, and they received my check and I am officially covered. I can't believe it's taken until 2 days before my surgery to have 100% confirmation of coverage, I've been dealing with this hassle since mid-March. It's a huge praise.
While COBRA is crazy expensive, it's quite a deal considering the costs of brain surgery (+$100,000). I asked the neuro, I had to know ; - )
I still have to ask someone to update my blog while I'm under the knife. Since I won't exactly know whats going on, it'd be cool to have someone write down what the nurse tells them as the surgery progresses. You've been warned...
This has been the hardest to write post ever. It is slow, and laborious. Usually I quit typing because the post is so long. I am quitting now because I'm tired of staring blankly at my laptop.

Even more official...

A friendly lady called from Spectrum Hospital today, to 'register' me for surgery. She just went over the basic info, address, phone number, emergency contact etc. It was kind of interesting, because I've never had major surgery before. She said that a nurse would be calling me in the days to come as well, giving me more specific information on prepping for surgery. I'm sure she will call when I'm two miles in a cave in Kentucky, with a bat attacking my hair. (I'm going to Cave City, and then to Savannah, Georgia to see my niece, Morgan's gymnastic tournament.)
The blog will be dormant until at least Monday. Hopefully I'll come up with a profound post the day before my surgery. I found out that I will be able to bring my laptop to the hospital, so I'll be able to post updates during my stay at Blodgett. Or at least have someone type for me.

World, say hello to Ashlyn DeJong! Luke and Kari Dejong's new baby was ready to say 'hi' at 12:43pm on Friday, June 19th, 2009. Luke is my first friend to have a baby, so this is pretty awesome/exciting. He gets back from Iraq in September. Ashlyn is like a not-ugly version of Luke.
There is absolutely nothing in the world like holding a newborn baby. Words cannot describe the feeling.

I got the Oreo, you bring the Milk!

(Before I get started on today's events, I went back and read all my posts so far. I need to apologize to everyone for making them long-winded, wordy, boring, and mind-numbing. I'm surprised Google hasn't taken my blog offline for wasting internet space.)
My appointment today with Dr. Daniels was scheduled for 12:15pm. I took the whole day off from work, so I set my alarm for 8AM, thinking I'd get up and go run, and have time to make an omelette of some sort for breakfast etc. Well, I woke up wide awake at 6AM, and stared at the ceiling for two hours, thinking about my appointment. LAME.
My mother accompanied me to the Neuro's office today. She wanted to put the fear, as only a mother can, into the man that is going to cut my skull open. She was well behaved, no "DON'T HURT MY BABY!" or any such nonsense like that. Back to seriousness....
We decided for sure on the retrosiggmoid style of surgery, which is cutting a portion of skull from behind my head out, extracting the tumor, and putting it all back together, humpty dumpty style. The option of drilling behind my ear was ruled out because they typically take fat from people's stomach and putting it in the drilled hole. (I've already gotten several fat-donation offers...seriously, that is gross. No thank you.) I have like negative percent body fat, so that was a concern if we went that way. Also, drilling behind the ear is better for small tumors because the access hole is smaller than cutting out a portion of skull. Since my tumor is larger, retrosiggmoid is the best option. Also with retro, there is a slight chance of preserving some hearing, whereas translab (drill behind ear) you are guaranteed to lose all hearing on the tumor side.
In the MRI picture that I've posted, you may have noticed that the tumor looks 'lumpy'. Dr. Daniels said it may be because the tumor has cysts growing on it. That would actually be a good thing, because the cysts would just be popped and drained. This is easier and less time consuming than extracting a tumor. 'How do you extract a tumor' you ask? Well, funny you should ask, because I found out today!
Apparently they stick a probe-like thingy-doohicky into the middle of the tumor, and it sends out ultrasound waves that break down and destroy the tumor fibers. Then the doctor actually vacuums out the disgusting gel and throws it at the newest nurse in the room. Seriously, they do vacuum it out! Then they 'peel' the outside layers of the tumor off of the hearing nerve. If the tumor is 'sticky', he will leave a small layer on the facial nerve in hopes to have no permanent damage to the facial movement ability. The odds of permanent damage to the facial nerve is fairly low, about 10% for AN's, and less than 10% for Dr. Daniels because he said he's more conservative than most Neuro's. Meaning he would be more apt to leave some tumor on the facial nerve to preserve all functions of facial movement. So, you may have forgotten about it after reading all this blather, but I'm sure at first you were thinking, "What's with the Oreo and Milk reference on the post? Darin has finally lost his mind". Yes I have, but I do have a point...
I asked the Neuro to go over the MRI with me, so I could get a visual of what the big fiasco by my brain was. He said that while my tumor is 2.7CM at it's widest point, it is much less than that at it's opposite angle. He said it's shaped like an...an...wait..for...it....OREO! He also said that while the radiologist said my tumor looks like it has cystic growths, he thinks it looks too dark to be a cyst. It doesn't make too much of a difference to me, but it's easier on the neuro if it is cystic, because cysts are easier to remove than tumor, as explained earlier.
The biggest new news to me today, is that my balance nerve on my tumor-side has about 30% damage to it. During surgery the balance nerve is destroyed, so my left balance nerve will be the lone soldier keeping me from teetering over like Jacob after he gets off the tilt-o-whirl. Dr. Daniels said he was surprised that the balance nerve isn't more damaged, because with large tumors the good side usually starts compensating for the bad side for many years. Not so in my case. This means that after surgery I will feel like I'm on a tilt-o-whirl that I can't get off of. Pretty awesome, because Cedar Point is really expensive, so I get this for free! What a deal!
Dr. Daniels said that recovery time will be (approximately) 5 to 7 days in the hospital, with 4 to 8 weeks of physical therapy once a week. I'm actually looking forward to physical therapy, as I think it'd be a fun and rewarding job. I am totally bringing my resume!
(There seems to be ALOT of material here, so let me know if I need to clarify or explain in more detail anything. I also reserve the right to change and modify my views/opinions/explanations of the medical aspect of my tumor stuff. I try to get the facts right about the medical jibber-jabber, but it's possible that I've gotten something off.)
My appointment today was the last appointment before the big day. I asked Dr. Daniels if there is anything else, and he said, "Nope. See you at 8:15AM at Blodgett!". WHOA!!! It's really happening. I am supposed to be Blodgett at 6:30AM for pre-surgery stuff. I'd tell you more about that, but I guess I don't know more about that. I'm enjoying the summer so far, I went running this morning, and I played tennis with Luke this afternoon. Ben and I are also going to South Carolina to visit Karri, Siara and Morgan. Morgan is in a gymnastics tournament, so that'll be fun to see. Until next time...

What are the odds...

Back a few months ago, near the beginning of my own version of the Acoustic Neuroma journey, I signed up for a newsletter from the Acoustic Neuroma Association. They sent me many brochures about various information on AN's, surgery types, etc. Excellent material, easy to read and informative. So when I found their quarterly newsletter in my mailbox yesterday, I was looking forward to reading it. As I read a side-column about a 48 year old male who had successful surgery in Grand Rapids, MI, I thought, "Whoa, out of all the things I've read online, nobody's ever mentioned my hometown!" So, being a stalker-in-training, I emailed the address that was used in the newsletter and introduced myself. The address was the patients wife's address, and we have emailed a few times. Al (the ANer) had surgery at Blodgett in January, of '09 with the same neurosurgeons that I have. They said they both did a fantastic job, and the people at Blodgett were awesome as well. She also said that "Prayer is powerful and makes all the difference as God promises in His Word that He hears and answers our prayers as we call upon him." How cool is that? Out of all the emails ANA could've printed, and out of all the weirdo's out their in the world, I got to email a Christian couple! Pretty amazing.
There is also a lady in her late twenties in Canada that had surgery just a couple of weeks ago that I've talked to a little bit. The worst after effect from her experience has been 'a small headache sometimes'. She said it's hard to believe how good she's doing. She played a soccer game the night before her surgery! How cool is that? She drove 10 days after her surgery. I should ask her what took her so long, I'm going to do it in 9 ; - )
Now to get to the important stuff...Robyn is correct, Jen and Berry's 'Cherry Gorilla' is really good. Or is it 'Hairy Garcia'? The tumor must be messing with my 'remember nerve'...

Big Decisions with Surgery under 1 month away

When one comes to a point in his/her life when brain surgery is less than one month away, you start to reflect on the things that matter. Things that you will remember for a lifetime. Decisions that pre-tumor-awareness you wouldn't think twice about. I had one of those decisions to make tonight, as I was picking things up for my everything-from-scratch-yes-even-the-dressing Greek Salad (ask Ben, it's awesome). After filling my cart with food so natural it doesn't even have a food label on it, I strolled down the frozen food aisle. It was in aisle 5 at my friendly neighborhood grocer that a decision that would shape the next few days of my life had to be decided upon.
There must have been twenty different flavor's of Haagen-Dazs. How could one be limited to choosing just a single pint of this taste bud-exploding, mind-altering bliss? It cannot be done. It must not be done. Luckily, they had a 'buy 2' special as well. You know how 'diet' books always say, "never eat ice cream out of the carton, because you may eat more than if you put some in a bowl". That's absolutely preposterous. I eat directly out of the carton specifically so I WILL eat more than if I put some in a bowl! Isn't that the point of eating Haagen-Dazs anyways?
PS - A couple of weeks ago, another brand of expensive ice cream was on sale so I tried it out(It rhymes with Jen and Berry's). I will not make that same mistake again.

Do you hear that?

A fun bonus that I have failed to mention about having an Acoustic Neuroma is that a vast majority of AN ears have tinnitus. Tinnitus is ringing, buzzing or other general 'white noise' that is sometimes constant, sometimes comes and goes, etc. It is different for everyone. I first noticed my tinnitus when the nurse at one of my appointments asked if I had any ringing in my ear. I told her 'no', and then later that day I noticed my ear ringing. I guess I had the ringing for so long, that my mind blocked it out. The funny thing is that for the first 6 weeks or so, it would come and go. I noticed it after I took a hot shower, and especially loud music or noises really made it flair up. For the last two weeks, it has not gone away. The crazy part is, that if I do end up losing my 100% of my hearing in my AN ear, it doesn't mean my tinnitus will go away. You can have roaring tinnitus and be 100% deaf. Weird, huh? When I'm just sitting around, I notice the ringing. But if my brain is engaged in an activity, I don't notice it. To get an idea of the personal concert in my head I get to listen to 24/7, click here.
Now that my surgery is less than a month away, it's definitely getting more 'real'. I'm in the process of making a list of things I need to get done, and take care of before the big day. Some big important things, and some really big important things, like which video game I want to buy for my recovery time, etc. I'm staying very active, running, biking, pilates, even some fight training! I am enjoying the summer, trying to get in 3 months of summer fun in 1 month. I still haven't seen the new Terminator movie though, that HAS to happen soon...
Funny story, a couple weeks ago I went for a walk around my neighborhood, and some crazy lady was taking down a yard sign that said something about "bring our troops home" or something. As I walked by, enjoying the fresh air and the concert in my AN ear, she said something like 'that idiot Bush sent them over to Iraq, I can't wait until Obama brings them home'. Usually I let comments like that go, but no, not this time! I replied, "Wait a second! What about the idiot Obama who is sending troops to Afghanistan?" She said that 'oh, but we NEED troops there!'. It's frustrating when people so blindly follow their party line. Apparently our 'world police' policy is only OK when her party leader initiates the war. My new favorite bumper sticker is "The USA is making enemies faster than our armies are killing them".
That was a fun tangent. Now that I've crossed the line and offended every single one of this blogs readers.... ; - )
Back to AN-business, I've been recommended the book, "The Brain that Changes Itself" by Norman Doidge. It discusses how complex, and powerful the brain/mind is. I'm going to look for it this week. People from the AN forum said it was a good read for anybody, but especially for people going through different brain trauma/issues. I'll post an update of my book reading progress later on...
Another thing I was thinking about, was shaving a message in my hair so the surgeons will know what ear to operate on. I was thinking about "left/wrong" about my left ear, and "right/right" on my right side. Or maybe "it's over hear[sic]" with an arrow pointing to my right ear. Any other ideas? I'm not sure if neurosurgeons have a sense of humor, so I might just go with a mohawk type haircut, something like this. Let me know what you think...

Is this big for a kidney stone?

Good news = I do have a brain! (Gray blob)
Bad news = I do have a tumor! (White blob)
I haven't had a consult with the doctor about this MRI, so I have no idea what is going on, other then the white stuff in the green circle isn't supposed to be there. When you get an MRI done, you can request a CD to be made for free(at least it was for me). It comes in a crazy file format I've never heard of before(the program comes with the CD), so, being a computer geek, I did a 'print screen' and opened it in MS Word and saved it as a .doc file. Then I had to open it in Adobe Illustrator, because Photoshop doesn't open .doc files, then save it as a .jpg and then open it in Photoshop and crop to get other text off the shot, and add the circle.
Anyways...If you look closely toward the top of the white mass, it looks like there is a crevice of some sort. The first time I met with Dr. Daniels, I remember him saying my tumor is an odd shape, referring to the first MRI shots. From my understanding thus far, this second MRI that I had done 'slices' more often, and at a closer gap between 'slices'.
Also, when I was first looking at this image, I couldn't figure out how the tumor appears to be on my left side! I was perplexed for a few minutes. Then I noticed that on the image, the 'r' was on the tumor side, and the 'l' was on the non-tumor side. Any guesses yet? I had to ask Ben what kind of black magic they use in the Tube of Gloom......The image is taken as if my feet coming toward you, and I'm laying on my back. It'd be like the camera is at the floor, shooting up towards the sky. I don't know if that was tricky for anybody else, or just me...

Tumor meets scalpel on July 1st.

It is official. The countdown has started. 47 days until THE big day. July 1st 2009, at Blodgett Hospital, is a day I will have probably 0% memory of. Kind of weird to think about it that way.
Dr. Daniels office called me this morning, again while I was driving around for work. I have one more pre-surgery appointment, on June 16th, 12:15 at Dr. Daniels office. I told the office lady that I haven't had either doctor actually go over the new MRI with me, and she said that there will be plenty of time to answer all questions at that June 16th appointment.
It's kind of frustrating, because I still don't know what surgery position we are going to do. And now I have to wait 4 more weeks to find that out, and the results from the ABR and ENG testing. I suppose me knowing the results doesn't change anything, other than me knowing the results. Like I said before, kicked or punched, either way it's gonna hurt.
I don't think much is going to change in the next month. This blog is going to be pretty boring...but I've learned that sometimes 'boring' is a good thing. Have a good month! - Darin

May 13th, 2009 = Dr. Keller Appointment

Wednesday I met with Dr. Keller, the 2nd surgeon that will be doing my surgery. Dr. Keller does spine and brain surgery, and is the doctor that will extract most of the tumor. Dr. Daniels will do the setup, skull removal, and then when Dr. Keller removes most of the tumor, Dr. Daniels will remove (hopefully) the remaining tumor on my hearing nerves.
Dr. Keller has July 1st reserved for me and my schmumor(that's not a technical term, it's the name I've given him. I'm pretty sure he's a boy.) Ben said he would wheel me to the window so I could watch the fireworks. East Grand Rapids has there own fireworks, so depending on where my room is, it might actually happen.
In other news, I did a 40 minute Pilates DVD yesterday, and the only thing that is sore is my triceps. I'm kind of wondering if I slept on them funny(is that even possible?), or if the soreness is from the Pilates. I tell you what, Ana Cabana(or whatever her name is) could kick my butt. I'm going to try to do Pilates 5 times a week. Fitness is a journey, not a destination. Or something.

April 25th, 2009 = I forgot to mention this race!

Just to prove that my life isn't at a complete stand still because of a silly tumor, I ran the Borgess "Run for the Health of it" half marathon in Kalamazoo, MI. It was awesome. I thought I was in really good shape, and I proved that I am in the best shape of my life by running 13.1 miles in 1 hour and 55 minutes, a full 4 minutes faster than my last half marathon. I felt great, and I could've run even faster, but at the time I thought I was going to be in a 25k race two weeks later, so I didn't push 100% like I usually do in races.
After talking to a few friends, I decided that strenuous excercise might not be the best thing if you have an inch sized glob pushing against your brain that isn't supposed to be there. I have tuned it down since the race, I'll run 2 or 3 miles at a time now. I'm starting to do Pilates now too. I like it, it's just hard to start something that you're bad at.
I also bought a Trek 1200 road bike the weekend before I found out I had a tumor. I've wanted to buy a nice bike for years, and 3 days after I finally get one I find out I have a tumor??!!?? I'm thinking about getting a trainer for indoors, that way I can still get use out of it, and that will be a great rehab tool. Balance issues can be a problem, so biking outdoors will be off limits for the short term. I can ride all winter indoors, and be in prime shape for a spring triathlon. That's my plan anyways...It's May, and I'm already talking about next spring. That's funny.

April 29th, 2009 = ABR and a ENG test

Dr. Daniels had ordered these two tests for me to do. An Auditory Brainstem Response (ABR) and an Electronystagmography (ENG) test. The ABR is used to "identify neurological abnormalities of the auditory nerve and the auditory pathway up through the brainstem. Electrodes are placed on the ear lobes and forehead, and insert earphones are place in the ears to deliver a click stimulus."(Taken directly from ENT Consultants:Vestibular and Neuro-Diagnostic Testing) It made me feel like frankenstien. She asked me questions like, count by 3 to 100. It was meant just to keep my brain active as it recorded the brainwaves.
The ENG test was the one I was worried about. They blow cool air into one ear, and then take some sort of recordings. Then warm air one ear at a time etc. Apparently some people get so dizzy, they vomit. I barely got a tiny dizzy, and I don't even know if I really did. I was grateful for that. I hope to get the results of these tests when I meet with Dr. Keller on the 13th of May. These tests were rather uneventful. Hopefully the results will be 'unremarkable', which I found out means a good thing on MRI results...

April 14th, 2009 = A phone technician and a neurosurgeon meet

I decided to drag my roommate, Ben along to my appointment with Dr. Robert Daniels, the Neurosurgeon. Ben works in management at Spectrum Health, at the Blodgett campus(2 miles from the downtown campus). He has worked at Spectrum for a long time(6 years, at least), and knows some of the doctors, etc. so I thought he'd be a good person to bring as he's familiar with medical terms also.
We got there about 15 minutes before my appointment started, and it seems like we sat in the lobby for about 8 days before the nurse-lady took us back to a room. Then we waited for what seemed like about 2 and a half decades until the Dr. came in(in actuality, it was probably ten minutes). I was very comfortable with his personality and the way he talked to me. He explained that because of the large size of the tumor, and my young age, radiation is not an option for me. (Just so you know, I'm not going to go into scientific detail about certain things, for example why radiation isn't a viable option for someone who's 25. It isn't cut and dry, and I don't want people to say, "well, I read a study that..." So I'll just leave some of the background out.) There are two viable surgery options to get access to my tumor.
Option 1: Translabyrinthine = They drill behind my ear, and I am guaranteed to lose whatever hearing I have now, as they 'go in blind' and go through my hearing nerve.
Option 2: Retrosiggmoid = They cut part of my skull out, behind my head and go in thru that hole. There is roughly a 50/50 shot at retaining my hearing.
Here is a link with more info on the types of surgery if you are interested:
http://www.dinagoldin.com/anarchive/approaches.htm
Dr. Daniels also used the official term, Acoustic Neuroma(also know as Acoustic Schwannoma) and a Meningioma. Up until this point, I thought (from self diagnosis on the internet and how Dr. Hart described it) it was for sure an Acoustic Neuroma tumor. But a Meningioma is slightly different, as it grows from the inside lining of the skull, as opposed to an AN, which grows from the sheathing of the hearing nerve. (www.anausa.org has a ton of quality info regarding AN's) Because of the low res MRI I had at MMPC, Dr. Daniels was unable to determine exactly what tumor I have. So, of course, had to make yet another appointment for FOUR more MRI's, a brain and 3 spines(More on that later). While he described the technical differences of the tumor, I got out of it that one is bad and the other is bad. It's kind of like, would you rather get punched in the gut or kicked in the gut? Who cares, they both hurt. Either way, I have a tumor that is crushing/constricting my hearing nerve(a cable) and it's not allowing all the signals to get through. He used the example of an electrical wire. That's what it really is also, your nerves send electrical signals to your brain. Pretty cool, huh?
Dr. Daniels explained that priority #1 is to preserve my facial nerve. The facial and hearing nerve are actually bundled together at their base, and split off as they go. If the tumor is 'sticky' and attaches to the facial nerve, Dr. Daniels said he will leave a portion of the tumor on my facial nerve, in hopes that my face will full recover movement after surgery. Priority #2 is to get all the tumor out, and Priority #2.1 is to preserve my hearing. I told him I absolutely agree.
I asked him how many of these surgeries he's done, and his answer was "I stopped counting a long time ago." He also said that if you're not good at brain surgery, you don't stay in business very long. That is a good point. He has worked with Dr. Keller (The second brain surgeon who will be all up in my skull) for over ten years.
Ben and I spent close to two hours talking with Dr. Daniels, and not once did he act like he was disinterested, or in a hurry. I am 100% confident with his abilities to take a part of my skull out, cut a tumor out, and sew me back up.
That's not to say there is no risk. This is brain surgery. He said sometimes they have to move the brain out of the way, and there is a possiblity of stroke, recurring headaches, paralysis, etc. But to end on a positive note, he said he did an AN surgery a while back on a 30 year old, and within 8 weeks he was playing basketball again. That is a pretty good success story. I hope to be running and biking again before the snow flies this year.

Church

One big thing I've left out is the fact that I have been going to Church every week for the first time in awhile. When I miss a week of Church, I don't feel right. That is the first time in my life I've ever had that feeling. This started in about February. I've cried every week in my pew. One Sunday I just teared up, and I thought maybe my crying sessions were coming to a close. They are not. I listened to an archived sermon from Pastor Samra, about how God can and does bring good out of evil. It was encouraging.

March 28th, 2009 = Walker Pump and Run 5k

A few weeks ago, I challenged Mark to an interesting lifting weights and running race. You bench press 80% of your own body weight as many times as you can, and then you deduct 30 seconds for every repitition of the bench press from your 5k run time. Mark obviously paid off the poor kid who was doing the calculations, as he won by a mere 40 seconds-ish. How much did that cost you Mark? Seriously, cheating at a race? Have you no shame?
Hopefully Brian and Luke won't be to scared of Mark and my fitness level to be in it next year. The minimum age is 16, so we have a few years before Jacob and Noah put all us old farts to shame.

April 10th, 2009 = A root canal??? Seriously!!!?!?!

I forgot to mention, I had a root canal done just a couple days before I met with Dr. Hart, and today(April 10th) I had the permanent crown put on. I had a root canal done in Sept. of 2008, and this one was worse as far as healing. It still isn't back to normal(as of May 12th). But it's small potatoes compared to the schmumor.

March 25th, 2009 = Dr. Hart tells me about a tumor in my head!

The last four days felt like four months. I'm about to find out what 'something' in an MRI is! Well, as Dr. Hart entered the room, I gave him the best fake smile I could muster. He showed me the MRI on his laptop and showed what he called a 'growth' on my hearing nerve. I asked him what the growth was, and he said, "It's a benign tumor". I said, "Whoa, what does benign mean?" He explained that it's not cancerous, and that it's extremely rare that people die from this. I have no idea what he said next. I don't remember if he talked for 2 minutes, or 2 hours. My brain stopped, and I had no idea what to say, think, or anything. I just had no idea what having a tumor in my head meant.
At the end of him talking and me not listening, he asked if I had any questions. I asked him, "What if I say, 'surgery is too scary, I'm not doing it'". He said since it is close to 3cm around, and at my young age(25) it is most likely a fast growing tumor. 'Normal' growth is 1-2mm each year. If I just let it go, my hearing will get worse, and since the tumor is already touching my brain, I would eventually die from this. Before death, I would have facial twitching, facial paralysis, headaches, nausea, and the list goes on and on. Dr. Hart said it is rare that someone my age gets a tumor this size. But the upside is that a 25 year old would recover surgery better than a 50 year old.
Dr. Hart then referred me to the only doctor in West Michigan who performs this type of surgery. So, it was back to the waiting game to learn more information about my brain tumor...

Hey everybody

Hey, I didn't realize until after I started posting, that the way I did this, it starts chronologically right now at the bottom, so I would start reading there. I am writing this after the fact, until I catch up to real time. I've been going to all my receipts of stuff, trying to figure out the dates, and order appts. were and such.
Also, this is a private blog for now. If you want someone to be able to read it, you have to give me their email address so I can make a decision if I want to allow them to see this. Maybe at some point I'll make it a public blog, but for now I don't want to. If you have email addresses of close friends and any family send them to me so I can add them to the list. Enjoy!

March 20th, 2009

Friday, driving home from work about 4:30pm Southbound on US 131, right where it goes from 70mph to 55mph but everyone still goes 80mph, my phone vibrates. Cool, I think. I don't have any weekend plans, maybe it's one of my loser friends who actually wants to do something! It's Friday, after all. Caller ID say's, "Dr. Hart". We got along fine, but I seriously doubt he wants to go watch the Pistons with me. The office assistant is on the phone, and says something like, "The MRI shows something, and Dr. Hart would like to have a follow-up appointment." Ya know how I said that doctors enjoy the thought of patients sitting alone in an empty room waiting for results? They also enjoy calling at 4:30 on a Friday that your "MRI shows something". Unbelievable. The appointment was made for the 25th.
I wasn't REALLY worried about it, because 'something' can be a billion different things. Maybe they found out my brain was shaped like a tuba or 'something' amazing! But I did think about it ALOT the next five days...just wondering of all the possibilities that you can conjure up from the word 'something'...

March 12th, 2009 = MRI Time

I've heard things about MRI's. Things like loud. Small. Scary. Noisy. Uncomfortable. The Worst. None of these words point to a good time. It was at the MMPC building in the outskirts of Grand Rapids. Easy to find, plenty of parking, not a bad deal. I've heard you can have some drugs if you are claustrophobic to help you deal with the TOG(Tube of Gloom, as it's known). I told the MRI technician that I was going to try without the drugs, to see if I could handle it.
The first thing the tech's do to make you uncomfortable is have you change into stupid hospital gown and pants. They're comfortable, but there is know way to not feel like an idiot wearing them. I was so confused if you tie the shirt in the back or the front, I thought they might knock on the door of the changing room to see if I was still alive or not.
Then they lead you into this small room, and have you lie down on a fairly stiff stretcher style board. They ask you questions like, "Do you have any metal in your head?" and "Any piercings" etc. MRI stands for Magnetic Resonance Imaging, by the way. It's quite amazing technology, and I am no where near the mental capacity to explain how it works, so I won't even try. I wanted to ask them if they've ever seen a nipple ring fly out of someone's shirt, but I decided not to.
After the different questions, they wrap a towel around your head, and then put a crazy helmet thing with two big eye holes on your head. They tell you to lie as still as possible. They give you a ball-type signaling device, so if you need to get out of the machine because you start freaking out, you can squeeze it and they will be your hero and let you out. But that's only if they like you.
So then the table slowly moves back into the TOG, and you think you're going to die. You life flashes before your eyes, and you think things like, "I knew I should've eaten that last piece of pizza! I could've finished it, what was I thinking! Now, because of that decision, I have consumed one less piece of pizza than I could have in my life! My brother will probably bring that up at my funeral too, how I said I couldn't finish it, and he'll say it's because I was a girl, but I knew I should've eaten it, I just didn't....what a failure..."
Then after twenty-ish minutes of thinking ridiculous things, the table started to move! Glorious! I am so outta here! Then the tech says, "now you're ready for your contrast" and you think, "unbelievable". So they stick what feels like a needle the size of an adult redwood in your arm, and back you go for another round of twenty-ish minutes. After I was done, I said "If I ever have to get another MRI, it will be way too soon..."

March 4th, 2009

I arrived at the audiologist office downtown Grand Rapids with an eagerness to find out why I hear like an 80 year old. I wasn't nervous because of my hearing loss. I fully expected them to see a huge piece of disgusting ear wax in my ear canal, get the firehose out and splash around, and I'd be on with my life + better hearing.
The first test in this adventure was a basic audiogram. You get placed in a booth about 8 feet high, 5 foot wide, 5 foot deep with dimple padding on all sides. I thought for a minute maybe they figured out I'm a crazy person, and in this box I can't hurt myself. But alas, the friendly audiologist gave me some big, over-the-ear headphones to put on.
It took about half an hour, she would give me different sounding beeps in one ear at a time. I would press a clicker button (I pretended I was on Jeopardy to make it more fun. She didn't laugh when I said, "What is a high pitched beep?") whenever I heard a beep. After the beeps, she read a word, and I would have to repeat the word if I could make it out. If she'd say a short word that I couldn't understand, I would say something ridiculous, like "Encyclopedia", "Gesundheit", or a personal favorite, "Do you talk to your mother with that mouth?"(Just kidding about this last one...).
After sitting alone in an exam room for about ten minutes, I received the results from her. I swear doctors know exactly how awkward and difficult it is to wait for results of tests. They get a sick enjoyment out of you sitting there, just waiting in a tiny room with a Newsweek magazine from 2004 and a trash can, while your brain goes insane thinking of all the horrible diseases you may have.
The results were that my left ear was near perfect, about 95% hearing ability. And then for the news that I thought were coming, but was not happy to hear. I had about 50% hearing ability in my right ear. She said she was surprised at how well I did at the word repeat portion of the test, considering how much hearing loss I have. She then asked if I wanted to see an ENT that same day, and I told her that would be great.
About 1/2 later, Dr. Hart comes in the room. He looks into both my ears, touches my face, throat, chest, and neck. He doesn't seem to have any reaction to this. He explained that some people just have hearing loss, and it is sometimes unexplainable(I think this is what he said, I don't exactly remember). He said that the hearing loss could stop, and I'd be at 50% hearing for the rest of my life, or it could get worse. There is no way of telling what the human body will do sometimes. He went on to say that if this hearing loss effects my quality of life, I could look into getting hearing aids. I told him for the time being, I was not interested! I'm 25, not 100. He said that it'd be very rare for a MRI to show something, but as a precaution, he would like me to have one. He asked me if I thought that was ok, because he said it was up to me to decide. I don't know why, usually I say 'no' to things like that. I'm only 25, why take precautions? But I didn't even hesitate. I said, "That sounds like a good idea".
After that appointment, I felt pretty good. I knew where I was at with my hearing loss. I was dissappointed it wasn't something as simple as a glob of wax in my ear, but I didn't think it'd be a big deal. I still have one ear at 95%, so no big deal...and my MRI was scheduled for the 12th of March.