Relevant Update 4 Year MRI Concern

It's been a few years (at least) since I have last entered anything on this blog. Well unfortunately  my last MRI results from 10/24/2013 showed something that needs further attention.
Two slices from the MRI show what could be a blood vessel but an acoustic neuroma can't be ruled out according to the doctor who reviewed the MRI. That gets me free entrance back into the House Ear Institute for further testing.
Hopefully I'm just getting myself all worked for nothing.
To be continued.

ONE YEAR

Hopefully anyone who's just been recently diagnosed with an Acoustic Neuroma will find this blog during their research. I hope it will be helpful for them, that's my intent.

Thanksgiving 2010

It was a very quiet Thanksgiving this year. Just my wife and I and a whole lot of food.

I decided to not make any new entries on this blog but after giving it some thought I've decided to do just one more. This one year entry will be the last as I don't see the need write about anything more on my recovery. Unless there is some new medical procedure that can repair my cochlear nerve there's really no more recovery beyond where I'm at now.

This is my head one year to the day after surgery.

(scar not too noticeable)

There's the old saying that the older you get the faster time goes by and I agree with that for the most part, but this year was an exception.
It seems like a very long time ago that I was lying on that hospital bed dressed in a hospital gown with my family surrounding me. I remember looking into all their faces and studying their expressions closely, trying to guess what they where thinking. I've never really imagined me being the one on the bed looking up.
Then in came the nurse with the russian accent who wheeled away from them into the OR. I can remember looking up into the bright lights and thinking how cold it was in there. Looking up towards the ceiling I moved my head around and saw the anesthesiologist standing right over me. He said "good night Michael we'll see you later".
Well that was one year ago.

So, with that being said lets discuss what life is like one year post surgery.

I'll start with the biggest problem first and that would be my hearing with only one ear or single side deafness (SSD).

Being able to hear out of only one ear really sucks. I can't think of a better way to say it without getting too vulgar so I'll leave it at that. I find myself having to get right into peoples faces when their talking to me in noisy environments. It's the only way I can hear what their saying. The loudest noise is the only one that I can hear so sometimes I have to stick my ear right in your face. You start to appreciate carpeted rooms more then big open rooms with no acoustic absorbing materials. Reflected sound is not good to me, it gets in the way of what I'm trying to hear. So anyone trying to talk to me in a noisy room your going to get a good look at my ear close up.
The other bad part of being SSD is sound direction, You have none. If I'm standing in a big room and someone yells "Hey Mike" I have to do a 360* look around to find you. I can hear you, I just can't tell where you are. Recently I find my self not even trying to find you anymore. I'll just wait until you come to me to say what you have to say. Sorry to any one who may take that offensively. But it's not polite to yell at someone anyway.

Then there is the constant ringing in the ear (tinnitus). It gets pretty bad occasionally, but I feel lucky when I read about some of the others who have constant severe ringing that has a big impact on their quality of life.

The second annoying problem is balance, or lack of it. I have been working extremely hard on regaining my balance and it's paying off tremendously. Unlike your hearing this is something that you can work on and you will see improvements. The best training I have found to date is hiking with rock hopping. I'll hike a few times a week down at the cliffs off the Palos Verdes Peninsula. I hike down the cliffs to the rocks and boulders and start hopping along where balance is a must. I'll also occasionally jump on my skateboard or bicycle to help with my balance. Looking backwards while riding my bike still seems to make me more dizzy more then anything else (it used to be so easy). So I don't recommend doing that.

But walk and walk and walk some more, that will significantly help your balance.

Other then those two issues there is not anything else I find problematic from the tumor removal at this point. I do feel an unevenness in my facial muscles when I yawn. A lingering residual from my facial paralysis. But it's not an issue.

I have not bumped my head yet on the surgery area, I'm very careful to avoid that. The scar does not bother me too much it's a little sensitive and while shaving my head so I shave very lightly over it to make sure my razor does not snag my scar. Ouch, it hurts just writing about it.

I once read in the AN forum-- http://www.anausa.org/forum/ that, "no one goes through this surgery and doesn't pay a price for it". Well, thats true, we do pay for it in some way.I would say my payment was about average for this surgery. Some come out better (hearing preservation) and some worse (severe tinitus, facial paralysis, vision complications and a few other bad things).

So my recommendation for anyone going into this would be, don't expect to keep your hearing on your AN side, prepare to be out of work for 8 to 12 weeks, there is a good chance that you will experience some temporary facial paralysis. This is normal so try not to get too freaked out about it. My paralysis did not start until one week after surgery and lasted for about three weeks. The most important thing you can do is to prepare yourself. Research all your options thoroughly, leave no stone unturned. You only get one shot at this so be absolutely sure you are prepared for what you are about to go through. Make sure all your questions have been answered PRIOR to surgery. Hopefully you have family or friends to help you out before, during after surgery. Take full advantage of their help you deserve it and you will need it.

For all who have been diagnosed PLEASE do yourselves a big favor and join this forum.

http://www.anausa.org/forum/

It was by far the most helpful place I found after my diagnosis. Think about it, these people have all been through this and are willing to share all they have been through. I was even lucky enough to personally meet some of them. Some only a few days after surgery while they were still in the hospital. This forum is the best place for any information about your choices. Any questions you have will be found there.

I will also be glad to help out any one who wants to talk about your AN concerns. Contact me by sending me a PM through the forum and I will reply to your message. My forum name is loose screws (tightened).


This was originally written on November 16th my one year anniversary. I've waited until now to post it.

I can't believe what just happened.
I just took a break from writing this to go get something for dinner with my wife and granddaughters. We walked into the restaurant to get some pizza and surprise, there was my kids, family and best friends waiting to greet me. I was really overwhelmed. My wife really got me on this one.

And I guess I'll have to take back the no one remembers part I wrote earlier (I deleted it).

Thank you to all of you who were there and especially to my wife and Lyndsay for pulling that off. You being there really means a lot to me.

my boys

My girls

My closest friends

And thank you to everyone who helped me through this year.

A very difficult year in my life. thanks for all your help, support and prayers.

Mike

Finding Normal

Time waits for no one thats a well known fact. My bout with acoustic neuroma has come and gone and I've paid a price for it that I'll carry with me for the rest of my life.

But, time and life go on and I don't want to get left behind.

Going on after surgery is proving to be quite a challenge. It seems that a lot of people forget that five months ago I had metal instruments moving around in my brain. I know everyone is busy with thier life, I am too, it's just one of those humbling experiences.

I've included some photo's in this update to show that I'm alright and back to living life to the fullest extent I can. My two year old granddaughter doesn't even know grandpa was down for a while and I give her credit for getting me up and moving around soon after surgery. She never lets me rest.

My wife and I recently went exploring in Anza Borrego. We hiked many miles during our two day adventure. This is the Carrizo overlook a beautiful place.
Here's another place in Anza Borrego, the wind caves.
Another overlook in AB.
My first tagged trout at the Lake Isabella fishing derby.
Physically

Balance-- I still feel a little wobbly, I don't think it will get much better but I do believe I will get used to things as time goes on. Hiking really helps.

Hearing-- This is a very tough one to get used to. I have always loved my music and have played guitar since I was a kid. Because sound is now one dimensional music does not sound as good and I just don't have the motivation to play as much. I also have a very sore elbow that makes it hard to play so I'm sure that is a contributing factor also. I still have difficulty sensing which direction sound is coming from. Another thing thats kind of related to hearing loss is my tinnitus, not just a constant ringing but there's popping and crickets that I occasionally hear.

Stamina is not quite what it used to be but from what I've read having to concentrate on your balance does work against your stamina. I just have to try a little harder.

Finding my new normal is something that I may do but I'm never going to give up trying, and it's just one more challenge in life that must be dealt with. I don't want to get left behind life is too short.

10 Weeks Later

The Irony of deciding to update my blog today is all's been well until today. This is the first day I've felt some reoccurring facial weakness. Here's a quick report on my progress.

PAIN- Every once in a while I can feel my jaw muscle ache when I smile or eat. My temple area is still very sensitive with some swelling Other then that no pain.

VISION- Is good, I can see as good as I did prior to surgery. The only thing I can notice thats a result from surgery is my right eye is always a little dry.

HEARING- GONE! This is the hardest part to get used to. There's been an increase in the volume level of my tinnitus with a lot of new sounds (clicking, screeching, heartbeat, clicking, etc). When in a loud room such as a room without any sound absorbing objects, the only thing I can hear is the loudest thing in the room. I also cannot tell what direction the sound is coming from. It's really hard to talk to anyone under those conditions. The thing that's the most upsetting is listening to music. It's just not the same, it seems to have lost it's depth. Now all music sounds two dimensional and I get discouraged when I pick up and play my guitar, it just doesn't sound right.

BALANCE- Better. Not anywhere close to where it used to be but much better. I'll have an occasional momentary laps of balance, but I'm getting used to them and I'm able to roll with it and regain my composure without anyone noticing. Moving backwards still needs some work. My new test for myself is to walk as straight as possible while turning my head back and forth. Try it.

FACIAL WEAKNESS- Being paralyzed on my right side for a few weeks I'm not complaining about a thing. That was the scariest part of this recovery, wondering if I would ever have use of the right side of my face again. I'm very fortunate that my facial nerve functions close to where it did before surgery. I can feel that the movement is not quite symmetrical. The right side does not move as good as the left. It feels stiff. But I'm not complaining, I know I'm fortunate.

THE SCAR- It's heeling very well and if you were walking by me you probably wouldn't notice a thing. I can highly recommend Dr. Bien's cutting and suturing. Being a person who shaves his head I still cannot use a razor over the raised scar just yet. It's still the electric razor for a while. It also appears that some of the skin is dying within the circle. There some brown blotchy spots on the skin within the circle.

COGNITIVE ISSUES- I feel great compared to a few weeks ago but, I still feel like I'm in a slight haze, not that bad just a little slow. I've noticed that my speech seems to be effected by this. Some words seem to be slurred or not there in the middle of a sentence. I'm hoping that because I have been in recovery away from people. That my communicative skills have gotten a little rusty.

To sum it up.

I went back to work last week and everything went as good as it possibly could have. In the last two weeks I've made some huge improvements. I feel that I'm getting very close to finding my new normal. It's really amazing how far I've come in the last two weeks. There's not much if anything that I can't do now that I could do before surgery. I feel that I've turned the corner.

Mike.

7 Weeks Post Op & 3 New Tricks

It's been a couple of weeks since my last update. There has been some improvements with my recovery so I'll share them with you.

I decided to see just what I'm capable of balance wise so, what's the one thing I've spent the most time doing that requires good balance. Any one who has known me for a while knows it's skating. No pools or ramps yet, just the street. I'll save the vert for later.

Trick#1 Skateboarding

I was in Tucson for Christmas and rode my brother in laws skateboard and it felt very easy to do. I felt more "normal" riding a moving skateboard than standing still.

I have a theory on this.

During surgery to remove the tumor, they have to cut out a section of one of your vestibular (balance) nerves from the brainstem. Because of it's removal you can't balance without concentrating . That includes just plain standing. Standing is something that you normally don't even have to think about doing, it's a sub-conscience act. After they remove the tumor you (at least temporarily) loose the ability to balance sub-consciencely. When skateboarding you always had to concentrate while riding your board. I believe this is not as big of a difference to your system and feels more normal then standing and even walking.

OK, here's my next trick #2. Riding a bike. This one's a bit harder to get the hang of. I first rode a couple of weeks ago, and once I maneuvered down the narrow driveway into the wide street it wasn't bad. The only real threat I had of crashing was when I had to turn my head around to see if any cars were coming from behind before I crossed the street while going down a hill. I can't trust my hearing as I once did. Turning my head from left to right quickly still throws of my balance off quite a bit, especially while rolling down a hill on a bicycle.

Trick#3
Now here's a fair warning to all. I'm driving. Dr. Brackmann gave me the OK to drive at my last appointment on December 22. He said take some short easy drives first, no freeways for a while. The next day Pam & I left to Yuma AZ. on our way to Tucson. She let me drive from Jucumba CA. to Yuma Az. About 150 miles. No problems. The next day we left for Tucson and I drove the first 200 miles. Again, no problem. I ended up driving all the way back so I guess I passed the test.

Work is 14 days away and I'm really looking forward to going back. You get bored not working, especially when you can't drive.

So to sum it up.

Pain- Just a little around the suture area and some occasional pressure from the temple area.

Balance- Getting better. Still act as if I just downed a 6 pack at times.

Vision- Im back to normal (except when I'm having a pressure headache in the temple area).

Hearing- There's annoying tinnitus when things are quiet. Loud rooms with a lot of people are the most dreaded places for me to be. I can only hear the loudest noise so if your talking to me keep that in mind. My hearing is the most challenging thing for me to get used to since my surgery.

Mike

5 weeks later

Yep, 5 weeks and 1 day. Today I had a follow up appointment with Dr. Brackmann (my neurotologist) at the House Ear Clinic. Things went well, he asked me how I was feeling made me scrunch up my face and smile really big a couple of times. He looked at my scar, asked me about my balance and said he was happy with my progress. I'm scheduled to see him again in a year with a new MRI.

This is how I feel that I am progressing.

I got board last thursday and decided I would test myself with riding my bicycle (thanks Cheryl) to where I work to say hi to my colleagues . I didn't do very well going down the driveway but once I got out to the street where I had more room to maneuver I felt safe. After that everything was going smooth until I got to the last block that's downhill. I figure I was going around 20 mph when I had to cross the street to enter the park. Having only one functional ear means that I have to look backwards over my shoulder to look for cars. That didn't go very well. But I managed to stay on two wheels. Coming home uphill was a much easier ride, it was very slow.

The next day friday, I had my friend Steve drive my truck with me in it of course, up to the Kern river. We had to take the canoe back to his cabin and pick up some things. Saturday morning was a morning I've been visioning ever since I was laid up in the hospital. We hiked down to the river and fished all day, what a great day. I felt like that was a major step in my recovery.

My face is about 90% back to where it was before surgery. My eyes are starting to track together most of the time and I'm starting to notice some tearing. It seems the more fatigued I am the less things work right. I have a constant ringing in my ear but it doesn't really bother me, it's just there if I listen for it. There is still some swelling around the temple area and I can feel a sense of pressure coming from behind my eye. But it is subsiding. So, overall I really can't complain much. You can't go through something like this and not pay some kind of price for it. I feel I didn't have to pay too much.

I'll update again when it's worthwhile.

Mike.

PS. Best wishes to Amy who's having surgery tomorrow to correct some complications from her AN removal surgery. I'm with you in spirit.

And best wishes to Marie on Monday. May the magic scarf give you all the magic you need.

Delayed Facial Weakness Progress

As many of you know, I experienced what's referred to as delayed facial weakness. This weakness is common in many acoustic neuroma patients. The facial nerve experiences some trauma that causes the nerve to swell on the side of the face during the tumors removal. That causes the facial nerve that controls the movement on that side of the face to temporally stop working until the nerve swelling goes away.

Quick recap;

My face worked fine until I got home 5 days after surgery. By the 6th day after surgery I had almost no use of the right side of my face, it went numb.. I also lost my ability to taste on the right side of my tongue. Since my right eye could not blink my eye would get dried out often especially at night while trying to sleep.

Little by little I noticed some improvement every day. I'm not back to 100% yet but getting close. Today I noticed enough improvement that I thought it would be worth posting an update. Today is the 28th day since surgery, or 23rd day since my delayed facial weakness started.

Here is somthing I couldn't imagine doing one week ago. Close right eye only.

This has been my indicator for improvement. My smile. It's getting close to normal, you can see more teeth, but you can still see a difference from one side to the other, especially around the eye.
The scar seems to be looking better. The only time I can get a good look at it is when I take a picture of it like this. The fact that I decided to start shaving my head a number of years back really makes it a challenging look. Imagine having to shave around a speed bump shaped like a backwards question mark. It aint easy!
As the rest of my recovery goes, stamina and balance remain the biggest obstacles for me. I'm sure that the lack of balance subconsciously is what causes my being fatigued so easily. You have to consciously balance yourself, one of the things you take for granted along with blinking, smiling and other things.

I'm looking forward to getting back to work. Being dizzy and not being able to drive, run, ride my skateboard, hike to a nice fishing hole and have a beer sucks.

One last thing before I go. Today is Lynette (AKA lawmama on ANA forum) from Florida's surgery to remove her acoustic neuroma tumor. She's someone I've met through the ANA forum. I'm wishing her a uneventful surgery and speedy recovery free of complications.

Hopefully I'll update soon.

Mike