Hi all,
What a journey
![Cry :'(](https://www.anausa.org/smf/Smileys/classic/cry.gif)
I had an acoustic neuroma removed (middle fossa) in August 2016.
Although I made a lot of progress in recovering it wasn't an easy road and it feels like things are standing still and isn’t going to get much better.
A week after the operation I experienced facial paralysis, my left side of my face was completely dead. This has gotten better with time and I am grateful that I got most of my facial movement back besides my eyelid that still doesn't close 100%. I wake up every morning having to wash my eye as the bottom and top eyelid are completely stuck together due to my eye tearing during the night. My eye also constantly tears when eating and my nose starts running uncontrollably.
It is winter here now and I suspect the cold weather is causing my headaches on the place where the hole was made in my skull.
My hearing on the right side was already at 40% with tinnitus before the operation and on the left side my hearing was still 94% with no tinnitus. The acoustic neuroma was removed from the left side and the hearing in this ear is now down to 20% with worse tinnitus then the right side. The tinnitus also varies and some days are worse than others. I had to get hearing aids to assist me with my hearing and I am managing ok.
I have learned to live with these discomforts and I am grateful that I still have some hearing left.
What is really getting me down is the following issues, I have been back to the doctor that did the operation and my general practitioner and I get the same answer all the time, this is normal and can still improve with time.
- My constant fatigue, I am a programmer and I sort off manage, my eye is a great discomfort as it loses focus and this seems to get worse as I get tired, which happens every afternoon.
- My concentration and focus is also not what it was before the operation and I find it more demanding to concentrate and notice that I cannot perform the way I used to due to the lack of concentration and focus.
- The slightest physical exercise or activities are a big no as it takes up to a week to recover.
- I was going for vestibular rehabilitation for 2 months but it didn't seem to help but rather make things worse and I had to stop the exercises as it completely drained my energy levels. I have tried several times in the last 10 months to continue the vestibular exercises but it is still to draining.
- That brings me to the balancing issue, my balancing nerve was cut during the operation and I was told that my balance will get back to normal once my brain stops using my eyes to balance and starts using the remaining balancing organ on my right side which would take a couple of weeks to months. This has not improved at all and has restricted my activities tremendously. I cannot walk straight when there is limited light and even during the day I tend to sway when walking. I am also not allowed to cycle or ride my motorcycle anymore which is quite depressing.
I have been on anti-depressants since the operation to prevent me going into a depression as I suffered from major depression a few months before I was diagnosed with the acoustic neuroma.
I am very lucky to get a lot of support from my family. I have noticed that my boss at work is getting less and less accommodating and is losing patience with my recovery taking so long which raises more concerns as I cannot afford to lose my job.
I currently manage to make it through the day by taking a 2 hour nap when I get home after which I wake up, have supper, spend some time with my family and head back to bed at about 21h00.
Weekends consist of sleeping most of the time so I can make it through the next week.
After 10 months I still have hope that my situation might improve although the rate of recovery has slowed down a lot, they eye and balancing problems don't seem to get any better and the headaches seem to get worse.
Regards,
Frederic