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.

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.