Bill's Health Issue

History
September 6, 2013

I have been having some hearing problems on my right side for most of this year, and issues with balance and fatigue for well over a year.     In addition, I have a loud constant ringing in the ear... more like a 250 psi steam leak on a locomotive than a ringing, and headaches all the time.   I figured it was just old age issues and visited the ENT doctor in June for a hearing aid.   Tests showed I am down to less than 30% hearing on the right side with no obvious causes.    

The ENT doc recommended an MRI, and they found an Acoustic Neuroma, aka tumor, on the auditory nerve about 8mm in size.   If you would like more info about this rare beast, click here is some reading material,

Good news -- yes, you can say 'brain tumor' and 'good news' in the same sentence --  is that it is a benign, slow-growing tumor;    bad news is that my hearing will never come back, and as the tumor grows, hearing and balance issues will get worse and other problems can happen.     The fatigue comes from the brain running in high gear all the time trying to compensate for the balance and hearing problems and that wears me down quickly.

We visited one neurosurgeon and he recommended a radiation treatment called 'Gamma Knife' to slow the tumor growth.    A second neurosurgeon opinion suggested that removing it by surgery, i.e., cutting a 2" hole in my skull above my ear, would be a better option.   Neither option sounds good to me, but neither does just letting it grow so I must make a decision soon.  

Assuming I go the surgery route, I will travel to Los Angeles to the House Ear Clinic for a couple of weeks sometime in Oct/Nov since my research showed they are the best.   Recovery seems to vary person to person, but periods anywhere from a few weeks to a year have been reported.

We have been cutting and packing kits like crazy to build up stock, but the reality is that some may run out before I can get back to work.   So, if you were planning on getting some kits for Christmas or to finish your sawmill complex, you might want to order real soon.

Diane will keep B.T.S. open during my surgery and recovery period.   At times, the phone may not be answered and email responses may be slow, but we will try to keep up and appreciate your patience during this period.


September 23 Update.

Surgery is scheduled for early November in Los Angeles.

Post-Surgery Update
November 26, 2013

Well, it has been a most interesting month! Surgery is over, and I am finally back on my mountain top after 22 days in Los Angeles!

Got out to LA on Nov 2. Spent Nov 4 undergoing several pre-surgery tests and evaluations. And there was 'good news - bad news' resulting from all that. Bad news - The 30% hearing on the right side was now gone. Good news - Since there was no hearing to save, the docs could use a different approach that allowed them better access to the tumor.

Surgery was on Nov 6. I have no idea what all went on that day due to some great drugs that kept me out! Was released from ICU on Nov 7, and had several rounds of extreme nausea, and lots of pain, but that finally subsided and I was released from the hospital on Nov 10. Left the hospital and traveled 50 yards to Seton Hall - a hotel-like complex for recovering patients and family.

The recovery week at Seton was boring. Watch a bit of TV, go to the hospital cafateria for breakfast, lunch, and dinner, and try to sleep. Sleep was evasive due to all the meds, but I did rest a lot. Went to a follow-up with the House Ear Clinic docs on Nov 14. More 'good/bad news' was received. Overall, things looked great... the tumor was benign, it was 100% removed, and there was no facial paralysis issues. The tumor had grown from 8mm to 10mm, so it was a good thing we got it out before it grew into other areas. Bad news was the lower part of the incision started to leak when they removed the stitches! More stitches were put back in, and I had to hang around another week!

The second week at Seton was even more boring than the first. Watched more TV, ate more hospital cafateria food, and got even less sleep. But on Nov 21, the second round of stitches came out, all was well, and I was officially released!! Then I had to find a decent flight home, and was able to schedule one on Nov 24.

The noises of the LAX airport and airliner were overwhelming, and by the time I got to Pittsburgh, I had a ripping headache, was totally stressed out, and ready to crawl into a dark, quiet hole. It is going to take a while for my system to get accustomed to being deaf on the right. For now, I need to avoid loud environments and even phone calls which seem to bounce around inside my head.

Overall, I feel good... just tired from the travel and from my brain trying to adjust to the new normal. However, I know I need to take it easy for a while so the brain can grasp this new normal, so that is the plan.

A special thanks goes out to the doctors and staff of both the House Ear Clinic and St Anthony Medical Center. I could not have had better treatment from folks who were both friends and caregivers. And thanks to all of you for your continued support and your understanding as Diane and I go through this most interesting time!!

Take care
Bill

Recovery Update
April 16, 2014

Five months and a week post-op finds me realizing that recovery is a strange place. Some things seem right... feeling has returned to the incision area - for a while it stayed numb, sleep is getting better, and I am finally starting to do some development work for B.T.S. The last four months all I have done is cut & pack existing kits and fill orders; nothing new has been created.

But recovery has lead me to what other AN survivors call the 'new normal' where things are as good as they are going to get, and I have to adjust to that. In this 'new normal' I am totally deaf on the right side, the right half of my head is always filled with tinnitus - a loud hissing noise similar to a steam leak, short term memory is not as good as it used to be, headaches are constant companions, and it takes more energy to focus on a problem. The brain is also using more energy just coping with the deafness so I still get fatigued easily. I really miss my old energy level!!

In addition to all that, going into a noisy environment, such as a grocery store, causes the tinnitus to increase in volumn and the headaches to get worse. So I avoid places like that! And just trying to talk with more than one person causes problems also; just too much noise makes it is hard to focus on the conversation.

But even with all that, I am grateful to God for keeping me here for a while longer.

Thanks for your continued support and your understanding!!

Take care
Bill