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

Adios Magic Scarf

Today marks the end of a significant time in my life. The passing of the magic scarf. Yeah, it's only make believe but it's the connections with the others that's so special. When I first found out I had a tumor I searched the web for any information I could find. That's when I found the ANA discussion forum (where the scarf travels through) and I knew that I found the right place for answers. To be able interact with real people who are heading for surgery or have already gone through it and are willing to share their experiences with others is invaluable. It's a very special forum with very special people. Amy and Cheryl were the first two that I met on the forum and they both had the magic scarf during their surgeries. Little did I know then that Dennis would receive the scarf from Amy and then hand it off to me. I thought it was a chick thing until Dennis took possession of it but I'm glad he did because I got to meet him, then Tammy and Jay when it was my turn to hand it off. Hey, no homophobes here.

This is wear the handoff takes place. A very special place I might add. This is a view of St. Vincent's Hospital taken from the House Ear Institute. You can see the back of the memorial of Dr. House (the real one) looking towards the hospital.

Well, this is where I part ways with the magic scarf. I have had it since November 13 (much too long) and was ready to pass on to the next person, Tammy. I first wrote Tammy around October 29 on the ANA discussion forum and we stayed in contact throughout my surgery. I knew soon after that, that she was the one I wanted to pass the magic scarf to and I was very happy to hand it to her in person. That was one of the most emotional hugs I ever felt. She is a very sweet lady and Jim her husband is a very nice man. I really wish the best for the both of them.

Here's the L.A. group with Tammy and myself. From left to right Lainie, me, Tammy, Nancy and David. This is the most incredible group of people who care about others that they've never even met. They give their own time to meet with others before surgery and answer any and all questions that they might have heading into surgery. They did this for me before my surgery and it was invaluable. They give you all the confidence you could ever want and take away a lot of the anxiety you feel going into surgery. Tammy really looks good with that scarf around her neck. I sure the magic will work for her.

This is Jay, another that I have come to know through the ANA discussion forum. He is here to have surgery Wednesday at St.Vincent's and we were able to meet him (and Tammy) between their testing appointments at the House Ear Clinic just across the street from the hospital. I just caught him as we were leaving for this photo. Unfortunately we could not get the full group shot. Tammy and Jay's appointments were overlapped and we couldn't all get together at the same time.

Well as I write this Tammy is in surgery and I'm wishing her the best. She and Jay are using the same surgeons that I used Dr's Brackmann & Schwartz. The best in my opinion.

Jay's surgery is tomorrow and I wish him the best also. I will be constantly thinking of you two and will be anxiously waiting for any news about your recoveries.

Until next time.

Mike

Well maybe a few days isn't enough to notice any difference. Guess I'm getting impatient. Any how I thought this photo comparison is relevant. This photo was taken 11-19, 3 days after surgery. Face was working fine.

This photo was taken today, 19 days since surgery. Face not working fine.

I'll guess I'll wait until there's a visible improvement before posting anymore photo's.

As for other progress, I would say that there's little if any improvement. Starting to taper off steroids, sleeping more but still not normal. Pain is all gone. I'm still feeling weak and because of my delayed facial weakness, my eye is still not blinking. This is my biggest complaint because it causes a few other related problems with my vision and balance.

Patients.

Mike