Balancing Ministry N' Work

November 26th is 4.5 years since I had my tumor removed. Hard to believe it has been that long. It has been a long while since I have posted anything on here. Most of my writing has been for the weekly sermons at Clark Baptist Church. That being the case I wanted do an update as my last couple of posts have been about the issues I have been facing. I have continued to follow through with the doctors directions taking med after med. Felt like being part of the medicine of the month club with something new every month. We tried a handful of different migraine meds with no success. In September I went to see the Neurologist again and when he walked in he stated he did not know what to do to help me. The only option he could think of was to send me to a Neuro Otolarygnologist at St. Louis Hospital. This is doctor number 10 at the 4th hospital since I started having balance issues since fall of 2013, just over a year. So, I did as suggested and saw this Dr. on November 3rd. It was a...

For the past 10 months I have been dealing with increased balance and fatigue issues. First doctor tried several drugs and even had me on valium for a couple of months. Second doctor decided it was due to sleep issues and I had a sleep study, already use an APAP machine and the setting was the same. That was not the issue. Third doctor wanted me to try Provigil, essentially prescription speed. He thought treating the symptoms would make me happy. Would have had helped with the fatigue not the balance issues and would have made me a bear to be around. Fourth doctor listened and started us on a new path. Fifth doctor ran some VNG tests, etc... and spend 2.5 hours with Alexis and I. Very informative we found out that the tests were normal. It tested for 70+ balance causing issues associated with the inner ear, they were not the problem. Sixth doctor ran some additional balance testing and we found out that for some reason the balance nerve on my good side is not communicating ...

I wanted to share a couple of updates that I have been sharing on ANAUSA which has a discussion board for Acoustic Neuroma patients and caregivers. Update from June 8, 2014 I saw the balance Physical Therapist on June 6th. She is a PHD who runs the balance physical therapy at Boone hospital in Columbia,  MO. Spent an hour with her on this first visit doing exams and talking about the sudden onset of balance issues and any other things that may have caused it. I have 3 sets of vestibular exercises that I am to do 3-4 times a day. She cut back on how much she wants me to do since 'I am trying to work full time'. She also seemed concerned about our upcoming vacation and how much I am going to be able to do at the lake. So far the exercises are kicking my butt so I hope they are retraining my brain. This week will be challenging with work, new exercises, and life in general. I am to call her next week and follow up appointment on the 27th after her and our vacations. She will r...

I celebrated my 4 year anniversary this week with a nice buffalo burger from Fuddruckers. While life has not always been easy since my surgery or all that I had to go through 4 years ago, May 26th will continue to be a day of celebration. So here I sit 4 years post op wondering what to type. For those that have read the last couple of blog posts from a couple of months ago you know things have not been great. Last summer I was very active, riding bikes for 80 miles a week, riding roller coasters, and driving half way across the country and back. It was a great summer. When fall hit it seems my body started having issues. I had started stumbling and having minor vertigo issues. Over the last handful of months I have seen several doctors, 3 ENTs, 2 Neurologists, and help from our local GP. Sadly as of today they have no idea what is causing the issues. One Dr. gave us several wild guesses and said he has no real clue. None of the tests are telling us anything. I am sure there will be m...

The last 6 months have been a down hill trend for me and how I have been feeling. Balance and fatigue issues have been plaguing me and getting worse day by day. Last week the Surgical ENT told me he was not sure of the cause so I reached out to a Neurologist. He agreed with us that the latest test on the ENT list was not something that was needed. It would only show that I am missing a balance nerve. So today I had two vials of blood taken to check a few things and they want me to have another sleep study done. I have Sleep Apnea and the Dr. thinks that I am not getting deep enough sleep to accommodate for the damaged nerves and other issues. The increased fatigue (obviously) and the extra balance issues 'should' improve if they update the settings on my CPAP machine. I am very hopeful that the Dr. is right and either the blood work or the sleep study will find an easy solution. The alternatives would most likely be life chang...

Here is part of a note sent to the Dr. this evening. Still looking for the cause and how to recover.   Summary so far: Nov 25 th started taking Dyazide 37.5-25 cap – no improvement Jan 9 th began taking Valium 5mg 3 times per day – leaves me a little foggy but has not knocked me out Jan 24 th started taking Robinul 2mg twice per day – no improvement Since November I would say things have stayed flat to gotten worse. The eye fatigue is just as bad as it was if not worse. Blurred vision, the same eye pain, and eye fatigue were me out significantly. I regularly need to close my eyes for a moment to try to relax. Any excess movement causes the fatigue to be more extreme. I cannot watch 5 th grade basket ball games without being exhausted. I think it is safe to say that it is a visual stimulus issue and we have not had much luck figuring out what is causing it. The question I have now is what is next? Do you have another option you want to try med wise, or sho...

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 coaste...