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1) How old were you at the time of your diagnosis?
I
was 37 when I found out about my Schwannoma.
2)
Do you have any history of Schwannomas in your family?
I
do not have any family history of Schwannomas.
3)
Where was your Schwannoma located? And what were
the symptoms that lead to your diagnosis?
Mine
was located in my middle ear, it is called a vestibular schwannoma, and it came
from my brain stem and into my middle ear. It started with mild hearing loss
which I thought was just fluid in my ear. And when I was 27 or 28 I got really
sick and thought I got bells palsy but it was the schwannoma growing into my
ear attaching itself to my facial nerve thus weakening it. Since it was such a slow
grower it took another 10 years to completely fill my middle ear.
4)
Could you describe, in whatever detail possible, what kind of
surgical treatment was performed on your Schwannoma, and if you would
consider it successful? (Or describe what you may know about the surgery that
may yet be performed, if you haven't been operated on yet)
On
6/30/14 they used the translabrynthe approach due to the size and they could
not save my hearing. I have a fat graft in my ear, which hemorrhaged when they
took the fat from my stomach. It was a 6-hour surgery due to the size of it.
5)
Having gone through the experience, what do you think are the
most critical questions for someone to ask their doctor about surgery
and treatment of this kind of schwannoma?
Can
you save my hearing? What complications are there? How long will the surgery
take from start to finish (they told me 4 hours weeks prior and then the day of
it went to 6 hours)? How long will it take me to recover? What should I expect
to feel in my left ear after surgery during recovery?
6)
Can you describe what the recovery process was like for you – if
you feel you have made a positive recovery…and what things you have done
that have been of most help to you? (Also, you are free to describe what
doctors tell you to expect from your recovery if you haven't been in surgery
yet)
Recovery
time should be 6-8 weeks. I had a complication with a csf leak through a suture
and went back in for a week and had a lumbar drain; if that happens expect an
extra week after you are discharged on top of the 6-8. I was back to work on
light duty 10# and under 3 weeks after my leak. My balance was ok after the
leak was fixed. I was very unsteady the first 5 days home but I think I
recovered quickly because my ear was full already so my right ear was already
compensating for it.
7)
Are you able to do all or most the things you did before? (Also
feel free to describe your abilities even if you are still living with the
tumor or tumors)
As
of 8/25 I am back to full strength and can resume all activities. I can do
everything I could do before. My ear at time has pressure but that is just the
healing per my doctor.
Notes:
a CSF leak is very serious get to the ER as soon as you can. Take it easy
during recovery, you don’t want any setbacks.
