At this very moment, 1 year ago, an acoustic neuroma, was being removed from inside my skull. I celebrated today by sleeping in until 11AM, and I'm still in my PJ's at 12:30PM. As I look back and think about how difficult the road to recovery was, and how a year later I still have some after effects from the surgery, the thing that stands out the most is that I never felt alone. I always knew I had a great family, but they really shined when I needed them most. From Julie or Robyn enjoying the sleepless nights on a tiny, hard bed at the hospital, to mom and dad always being there during the day, to everybody else visiting and bringing cards and presents and snacks.
Being 25 and going through a stage of 'helplessness' has really taught me more than I would've if I never would have went through this. I would take it back in a second to be my 'old normal' again, but I wouldn't be as strong and as grateful if I didn't go through 'the fire'. Every time I get to go for a run, or a bike, I thank God for healing me. I've never enjoyed the fresh air, or a beautiful moon, or a pretty butterfly before this tumor like I do now. For some people, I think it takes God allowing something pretty bad in your life to make you realize how awesome He and His creation is. I am one of those people.
I wondered if I personally, would ever see anything 'good' come out of this. I think I am. I met a friend of a friend who had a brain tumor, and I think he was encouraged to see that I had a normal life after the surgery. People have told me that reading this blog has helped them get them through tough spots because they know that things can get better.
I always thought of what is the first thing I'm going to say to God when I see him in heaven. I never really knew what I was going to say or ask. Now I think I'm going to say, "I'm so glad to see YOU". And then I'm going to be able to hear with both ears, Him maybe say, "Me too".
"In the world you have tribulation, but take courage; I have overcome the world.” John 16:33
Thursday, July 1, 2010
BAHA Surgery, 1st edition (June 3rd, 2010)
I had the first of two parts of my BAHA implant surgery done on June 3rd, 2010. And because I've totally neglected this blog, I am just now getting around to updating it today, July 1st. The surgery was a success, even though I was in the surgery room for about 2.5 hours, instead of the 'under 1 hour' that was told to me. The surgery consisted of placing an anchor in my skull, behind my ear, which the post (to be installed next surgery) will attach to. And also, taking this out of my skull:
The penny wasn't actually in my head; I put it there to give you an idea of the size of equipment. It's pretty incredible how small those screws are. The incision to get this out and the anchor in, was almost as long as my surgery incision. I wasn't expecting this big of a cut again, and my head was very sore. It's been almost 4 weeks now, and my head is still extra tender on the rear right side. It wasn't even recovered fully from my surgery a year ago, it still felt sensitive at times. I'm hoping that now that these plates and screws are gone, it will be able to heal 'naturally' without any extras in the way. The surgery was on a Thursday, and I was back to work on the following Monday. If people didn't notice my scar before, they sure did then! I got my stitches out 7 days post surgery, and that felt amazing. The nurse commented on how fast it healed, and then I realized why I stuck out from there typical patients: I was the only person under 70 years old in the waiting room.I am still going to physical therapy for my facial exercises once a month. I am using a neuro-muscular stimulator. It's basically a little computer box that has 4 electrical pads/leads coming out of it, 2 positive, 2 negative. I put one set of my top lip, and one set on my chin, and let it zap away for 30 minutes. It sends electrical signal through the skin, into the nerves that connect to my facial nerve. In theory, this will get the nerve 'used to' having signal go through it again, and help it heal. The improvements have been small and slow, but there has been noticeable improvement every month. It's a test of patience to do something for half an hour everyday, and not see results for weeks, if not months. I'd be lying if I said I have not been scolded for not using it enough. Another thing of note, my right eye still does not cry. It stays naturally moist like my left eye though, so that is awesome. It's just peculiar to me that it doesn't cry. Yes, I know this because I watched '7 Pounds' last month, and that movie got me!
I don't have a date yet when my third (and final!) head-related surgery will be. I also realize that I'm posting this exactly one year from my surgery. I'm going to sleep on it, and hopefully come up with something profound to say in the morning. Don't hold your breathe....
Monday, March 1, 2010
8 months post-op
I've been really slacking off the ol' updating of progress. It really is a good thing, because it means it's on my mind less and less, and I'm getting back to 'normal' so to speak.
I started physical therapy to hopefully improve my facial movement about 3 weeks ago. She gave me a list of about 10 exercises to do, 20 repetitions each movement, 3 times a day. Trust me, staring at your face in a mirror not moving very well is a depressing way to start your day. I had a 2 week check up last week, and there is some small improvements already. I have one complete wrinkle on my forehead, and the 2nd one is almost connected symmetrically now. When I say 'small' improvement, I'm not kidding. She said it is possible for improvements to continue for years. The lack of movement is now, in my opinion, all 'superficial' so to speak. It's not detrimental in my daily living because I have 5 wrinkles on my left forehead and only 1.5 on my right when I scrunch my forehead. All functional facial movement, I can smile, close my eye etc. has returned. I have another checkup in about a month to check progress again.
The sour taste in my mouth has improved greatly in the past month. I'm not sure if it's just strictly because more time has past, or if it's a byproduct of the facial exercises I've been doing. Either way, I am very grateful for the improvement there. The constant taste of a moldy gym sock in my mouth was getting old ; - )
On Wednesday of this week I received a BAHA tester that I am able to wear at home and work. It is attached to a sweet(cough cough) looking headband, and it just in general looks awesome. But it is absolutely amazing. When you turn it on and hold it in your hand, you can actually feel it vibrate when there is noise/sound. When it's on my head, you don't 'feel' the vibration though. It's magical, I swear. It's almost indescribable how I felt when I wore it at work. I could actually have someone talk to me on my right side, and I could look toward the left and I could still hear them. As if my right ear was still functioning. It's amazing how much I really do have to compensate by moving my left side toward the talker. It was an indescribable relief to not have to constantly re-adjust my ear towards the person talking to me. It really felt like someone took a giant boulder of stress off my shoulders. I'm not exaggerating. I knew I wanted the surgery and the BAHA before the demo. But now I KNOW the surgery will be worth it. The audiologist said my BAHA will sound better than the demo also, because it'll be a newer model than the demo, and it's not conducting thru hair and skin; it'll be directly attached to my skull bone via the post, not a silly headband. I go back this week to return the demo and schedule the surgery. I'm also contemplating which hairstyle I'd like to cover up the BAHA...maybe I'll give this one a try:
I started physical therapy to hopefully improve my facial movement about 3 weeks ago. She gave me a list of about 10 exercises to do, 20 repetitions each movement, 3 times a day. Trust me, staring at your face in a mirror not moving very well is a depressing way to start your day. I had a 2 week check up last week, and there is some small improvements already. I have one complete wrinkle on my forehead, and the 2nd one is almost connected symmetrically now. When I say 'small' improvement, I'm not kidding. She said it is possible for improvements to continue for years. The lack of movement is now, in my opinion, all 'superficial' so to speak. It's not detrimental in my daily living because I have 5 wrinkles on my left forehead and only 1.5 on my right when I scrunch my forehead. All functional facial movement, I can smile, close my eye etc. has returned. I have another checkup in about a month to check progress again.
The sour taste in my mouth has improved greatly in the past month. I'm not sure if it's just strictly because more time has past, or if it's a byproduct of the facial exercises I've been doing. Either way, I am very grateful for the improvement there. The constant taste of a moldy gym sock in my mouth was getting old ; - )
On Wednesday of this week I received a BAHA tester that I am able to wear at home and work. It is attached to a sweet(cough cough) looking headband, and it just in general looks awesome. But it is absolutely amazing. When you turn it on and hold it in your hand, you can actually feel it vibrate when there is noise/sound. When it's on my head, you don't 'feel' the vibration though. It's magical, I swear. It's almost indescribable how I felt when I wore it at work. I could actually have someone talk to me on my right side, and I could look toward the left and I could still hear them. As if my right ear was still functioning. It's amazing how much I really do have to compensate by moving my left side toward the talker. It was an indescribable relief to not have to constantly re-adjust my ear towards the person talking to me. It really felt like someone took a giant boulder of stress off my shoulders. I'm not exaggerating. I knew I wanted the surgery and the BAHA before the demo. But now I KNOW the surgery will be worth it. The audiologist said my BAHA will sound better than the demo also, because it'll be a newer model than the demo, and it's not conducting thru hair and skin; it'll be directly attached to my skull bone via the post, not a silly headband. I go back this week to return the demo and schedule the surgery. I'm also contemplating which hairstyle I'd like to cover up the BAHA...maybe I'll give this one a try:
Tuesday, February 2, 2010
Saturday, January 30, 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.
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.
Friday, January 8, 2010
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.
Monday, November 2, 2009
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)
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, 2009Monday, October 5, 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?
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?
Sunday, September 20, 2009
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...
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.
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.
Monday, August 24, 2009
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...)
Tuesday, August 18, 2009
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'.
...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'.
Sunday, August 16, 2009
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 ; - )
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 ; - )
Saturday, August 1, 2009
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.
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.
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