Hi Lisa,
I was pretty much in exactly the same situation as yourself.
My AN completely filled the IAC, and the MRI showed my hearing and balance nerves were squashed flat like a ribbon instead of being round, and that the tumour had been pushing so hard on the IAC that it had deformed the boney internal auditory canal. When I asked my Neurosurgeon about post radiation swelling he informed me that it was caused by the tumour cells being unable to control the amount of water within the cell as it dies. As your tumour grows naturally it will put immense pressure on the nerves and blood vessels. This happens regardless of whether the tumour is radiated or not, although radiation will speed up the process.
Personally and my opinion only I would much rather have radiation performed on the IAC than right next to my brain stem.
The less grey matter zapped the better in my opinion.
My neurosurgeon informed me that 2mm away from my tumour I received only 20% of the radiation. So very comforting to know that very little else was radiated. One of the advantages of having the tumour treated while it is small is that far less radiation is required and the dose fall off is much quicker.
My experience post Cyberknife was very similar to how I felt before treatment except that all the symptoms were worse.
Symptoms were annoying not debilitating.
Mind you the symptoms may have got worse anyway as a natural progression of the disease, I will never know.
Pre Cyberknife I had hearing loss, mild tinnitus, 50% reduction in my balance nerve on my right side, I was often tired, and had a lot of concentration and memory problems. Typing became very difficult for a month, I would press wrong keys continually and sentences would be just wrong. I run my own business, which means I am constantly in meetings with staff and customers. I found speaking on complex issues increasingly difficult. My concentration was at times terrible, and I would often get confused mid sentence.
Hearing loss also meant I was struggling in large meetings, and I also had that living in a cloud feeling and "Wonky Head" as people have so appropriately named it on this site.
All of that happenned before treatment.
After Cyberknife, it was like a magnifying glass, what ever symptoms I had got worse, again annoying not debilitating.
Balance problems, hearing loss and tinnitus being the most obvious. Not everyday it came and went in cycles.
Slowly all symptoms got better. At 5 1/2 months I had my first hour where I felt completely normal again.
My hearing had improved, balance was much better, the cloud had lifted, the "wonky head" gone and I completely forgotten that there was anything wrong with me.
Very slowly things improved, a week later I felt good for 2 hours.
A month later I felt good for a day, and so things continued to improve.
I am now 20 months post treatment. I recently had 2 months straight of feeling completely normal.
My hearing, balance, concentration, tinnitus, all fixed. The increase in my energy levels in the last few months has been particularly surprising. I thought I was getting old.. But beginning to realise the fatigue was probably caused by my AN.
Had a hickup a few weeks ago with increasing symptoms, which lasted about a week.
All good again now.
I never thought I would feel normal again. I am back to the old me of 5 years ago, long before I even knew I had a tumour.
My hearing is better than pre treatment and at my most recent test 2 weeks ago, my hearing in my AN ear tested at -20db across all frequencies, compared with -10-15db in my good ear. -20db is considered to be within the normal range of good hearing.
I am so greatful to have the old me returned.
This has been my experience with radiation. I feel very fortunate and privileged to be where I am today.
