An Unexpected Turn - Acoustic Neuroma Recovery Update - January 2014
Since I have been spending my time writing recently on sermons for Clark Baptist Church, I have not had much time to write for my blog. I wish that were the only reason, there has been a lot going on with my recovery that I was not sure I wanted made public.
Last message was Sept. 2013 and we had Amazing test results with no tumor. That has not changed! Things have been tough but no sign of tumor growth. No surgery in the future or anything like that.
2013 was a great year for my recovery. I was able to start riding a bicycle again and between indoor and outdoor riding was hitting 75 miles per week. I lost 20-25 lbs and a couple of inches off my waist. My balance was doing pretty good, but the rides caused brain fatigue. It wore me out but it was worth it. This last summer we drove over 2,000 miles to PA and KY to visit family and go to the creation museum. It was a great trip and I drove every minute of it. We also spent 3 great days at Six Flags St. Louis riding roller coasters and watching Awesome concerts. Matthew West, 10th Avenue North, Casting Crowns, and Building 429. They all rocked. Great concerts and great memories with the family.
Things started to change in August. Bike rides took a lot more out of me and I found riding 30-40 miles per week caused extra balance issues. It gradually got worse and I had to stop riding. As if that was not enough, I found myself stumbling all of the time. I would be walking in a straight line (relatively speaking) and find myself 2 feet to the right or left walking into things. If people did not know me better they might have thought I was drunk. One week in Oct, it was really bad and I almost hurt myself walking out of my office at work. I was also finding it difficult to drive without getting dizzy or off balance. I finally came to the conclusion (reluctantly like most guys) that I should not be driving. As all of this stacked up, I called the Dr. (again reluctantly) to try to figure out what was going on.
From the point I scheduled the appointment till Nov 25, 2013 I kept a log. Here is a sample of the things that would happen on various days.
Hand Tremors - shaking
Hand Spasms – sudden jerk
Head Aches – spikes of pain on tumor side of my head
Motion Sickness
Eye Fatigue
Fatigue in general
Driving wears me out – I had stopped driving outside of Centralia
Unable to walk in a straight line
Stumbling into things
Stumble on flat ground
Dizziness
Exercising makes it worse
Memory seems to be sketchy at times
Mumble or slurs occasionally
Visual stimulus (wind blowing leaves, rain, things shaking) cause eye fatigue
Water drains out of left eye
Tinnitus – has been constant since before surgery, can be overwhelming at times
I did not experience all these in a single day, but some days were pretty bad and others not so much. Something had caused a major setback and we needed to figure out what and how to fix it. I was not ready to accept this as the 'New Normal' as many AN suffers have had to accept major side effects as normal.
The Dr. really listened and seemed to have a good idea of how to address things. We also agreed we did not want to mask the symptoms but wanted to attack the problem. Two things came out of that appointment.
1. Cut caffeine intake in half. Caffeine has half the dizziness causing impact as alcohol. Feeling dizzy cut back on caffeine. I cut out roughly 2/3rds of my daily caffeine, still working on the rest.
2. He put me on a med that would reduce the amount of fluid in the inner ear.
For 6 weeks I tried this and had Thanksgiving and Christmas breaks from work that allowed me to get extra sleep and have more relaxing days. Things did not get better, in fact I would say they were slightly worse. There were days I did not feel comfortable driving the 1 mile to work, let alone driving home after a long day at the office. Most days my brain was so tired I really needed to take an hour or two nap, not something I could get away with at work.
On January 8th I returned to the Dr. and he clearly stated that we would have known if it worked, it would be a noticeable difference. UGH... not what I wanted to hear.
I was anticipating trying another pill that would help alleviate the cause, but the Dr. is taking a different approach. He has prescribed a new med in effort to allow my eyes to relax as they are working extra hard to help balance me. We believe that this is causing the severe fatigue I have been feeling. Lights from others cars on the road, rain falling, wind blown leaves, kids running on a basketball court, and so much more causes your eyes to constantly adjust. Our eyes readjust every time something in your vision changes, mine are also trying to keep me on my feet and causing my eyes and brain to essentially get worn out until I crash.
Before I was questioning if I should drive, on this new med I cannot drive, go out on the factory floor, and many other things.
After a couple of days, no improvement yet. Alexis drove to Columbia, MO (22 miles) and I was so tired when we got home I needed a nap and as I type this evening I am exhausted and my eyes hurt.
We will see how things go over the next couple of weeks.
Through all of this I am still thankful to God! My recovery to date has been better than many of the Post AN stories I have read. I am not in daily pain, I have lived a very normal life for the last 3 years 8 months, and God has been faithful. I know He will see me through this leg of the journey, I will either be fully recovered or He will give me the grace and strength needed to adjust to the new normal.
Having Jesus Christ as my Lord has carried me through this journey so far and I know He is not done with me or taking care of me.
If you are going through a struggle today, know that God is with you! You to can have Him as your guide and your strength no matter what comes your way. Depend on Him in all things!
"11 For I know the plans that I have for you,’ declares the Lord, ‘plans for welfare and not for calamity to give you a future and a hope." Jeremiah 29:11 NASB
Stay tuned for more as I continue through my journey with AN.
Thanks and God Bless!
Robert
Last message was Sept. 2013 and we had Amazing test results with no tumor. That has not changed! Things have been tough but no sign of tumor growth. No surgery in the future or anything like that.
2013 was a great year for my recovery. I was able to start riding a bicycle again and between indoor and outdoor riding was hitting 75 miles per week. I lost 20-25 lbs and a couple of inches off my waist. My balance was doing pretty good, but the rides caused brain fatigue. It wore me out but it was worth it. This last summer we drove over 2,000 miles to PA and KY to visit family and go to the creation museum. It was a great trip and I drove every minute of it. We also spent 3 great days at Six Flags St. Louis riding roller coasters and watching Awesome concerts. Matthew West, 10th Avenue North, Casting Crowns, and Building 429. They all rocked. Great concerts and great memories with the family.
Things started to change in August. Bike rides took a lot more out of me and I found riding 30-40 miles per week caused extra balance issues. It gradually got worse and I had to stop riding. As if that was not enough, I found myself stumbling all of the time. I would be walking in a straight line (relatively speaking) and find myself 2 feet to the right or left walking into things. If people did not know me better they might have thought I was drunk. One week in Oct, it was really bad and I almost hurt myself walking out of my office at work. I was also finding it difficult to drive without getting dizzy or off balance. I finally came to the conclusion (reluctantly like most guys) that I should not be driving. As all of this stacked up, I called the Dr. (again reluctantly) to try to figure out what was going on.
From the point I scheduled the appointment till Nov 25, 2013 I kept a log. Here is a sample of the things that would happen on various days.
Hand Tremors - shaking
Hand Spasms – sudden jerk
Head Aches – spikes of pain on tumor side of my head
Motion Sickness
Eye Fatigue
Fatigue in general
Driving wears me out – I had stopped driving outside of Centralia
Unable to walk in a straight line
Stumbling into things
Stumble on flat ground
Dizziness
Exercising makes it worse
Memory seems to be sketchy at times
Mumble or slurs occasionally
Visual stimulus (wind blowing leaves, rain, things shaking) cause eye fatigue
Water drains out of left eye
Tinnitus – has been constant since before surgery, can be overwhelming at times
I did not experience all these in a single day, but some days were pretty bad and others not so much. Something had caused a major setback and we needed to figure out what and how to fix it. I was not ready to accept this as the 'New Normal' as many AN suffers have had to accept major side effects as normal.
The Dr. really listened and seemed to have a good idea of how to address things. We also agreed we did not want to mask the symptoms but wanted to attack the problem. Two things came out of that appointment.
1. Cut caffeine intake in half. Caffeine has half the dizziness causing impact as alcohol. Feeling dizzy cut back on caffeine. I cut out roughly 2/3rds of my daily caffeine, still working on the rest.
2. He put me on a med that would reduce the amount of fluid in the inner ear.
For 6 weeks I tried this and had Thanksgiving and Christmas breaks from work that allowed me to get extra sleep and have more relaxing days. Things did not get better, in fact I would say they were slightly worse. There were days I did not feel comfortable driving the 1 mile to work, let alone driving home after a long day at the office. Most days my brain was so tired I really needed to take an hour or two nap, not something I could get away with at work.
On January 8th I returned to the Dr. and he clearly stated that we would have known if it worked, it would be a noticeable difference. UGH... not what I wanted to hear.
I was anticipating trying another pill that would help alleviate the cause, but the Dr. is taking a different approach. He has prescribed a new med in effort to allow my eyes to relax as they are working extra hard to help balance me. We believe that this is causing the severe fatigue I have been feeling. Lights from others cars on the road, rain falling, wind blown leaves, kids running on a basketball court, and so much more causes your eyes to constantly adjust. Our eyes readjust every time something in your vision changes, mine are also trying to keep me on my feet and causing my eyes and brain to essentially get worn out until I crash.
Before I was questioning if I should drive, on this new med I cannot drive, go out on the factory floor, and many other things.
After a couple of days, no improvement yet. Alexis drove to Columbia, MO (22 miles) and I was so tired when we got home I needed a nap and as I type this evening I am exhausted and my eyes hurt.
We will see how things go over the next couple of weeks.
Through all of this I am still thankful to God! My recovery to date has been better than many of the Post AN stories I have read. I am not in daily pain, I have lived a very normal life for the last 3 years 8 months, and God has been faithful. I know He will see me through this leg of the journey, I will either be fully recovered or He will give me the grace and strength needed to adjust to the new normal.
Having Jesus Christ as my Lord has carried me through this journey so far and I know He is not done with me or taking care of me.
If you are going through a struggle today, know that God is with you! You to can have Him as your guide and your strength no matter what comes your way. Depend on Him in all things!
"11 For I know the plans that I have for you,’ declares the Lord, ‘plans for welfare and not for calamity to give you a future and a hope." Jeremiah 29:11 NASB
Stay tuned for more as I continue through my journey with AN.
Thanks and God Bless!
Robert
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