I was already like shaking cuz I knew it and he just told me that um they found
three tumors in my head and that it looks like I have a condition called
neurofibromatosis type 2 which I had never heard of before
we got used to her as a perfect little girl
perfect young woman you know very cheerful and I think nobody could have
imagined that there is some something to this to this magnitude is happening to
her he had asked around like what basically
like this is what happened does anyone have any information on
where we can go what's the best people to see and a lot of people recommended
dr. Schwartz and dr. Friedman but we thought that she would be a good
candidate for tumor removal and placement of an auditory brainstem
implant which can help her god forbid she loses the hearing in her other ear
just given the nature of our program we never want patients to wait to feel connected
and I remember that first phone call to the patient's father where he explained
about the diagnosis and hearing the fear in his voice and the anxiety and the
uncertainty you know I just I knew that we needed to connect with them as soon
as possible we all agree that that was like our first like breath of fresh air
is when we met you guys and like talk to you guys I mean everyone's just so
knowledgeable and confident and just to know that I was in the right hands like
it was just easier to note that so most patients with NF2 will lose their hearing
nerves on both sides and will end up totally deaf in this situation we have
to do whatever we possibly can to restore hearing so in the group of
patients with NF2 we've now been placing what's called an ABI which is auditory
brainstem implants but what we're trying to do with an ABI is give some auditory
information to somebody who otherwise would be in profound silence I think the
acoustic neuroma program at UC San Diego health is unique
as far as I know we're the only program who has a program coordinator
slash patient navigator and that's Kris Siwek who is so well-known to many many
patients around the world we have obviously a collaborative team between
dr. Schwartz and I and we also have collaborations with neuroradiology
neuro-oncology neuro anesthesia audiology all of Otolaryngology actually
and neurosurgery and we have a state-of-the-art hospital that recently
opened and it's it's just a fabulous place to care for patients why this is
so important to me is I was a patient of dr. Friedman and dr. Schwartz back in
2010 I know what it was like to go through the surgery I understand the
fears I understand the stress and I want for them so much to have the best
possible outcome and to feel that kind of support and more importantly to know
that there are so much life after this diagnosis the doctors and and everybody
was just so so kind and supportive of us and of her for them it goes outside of
the boundaries of the o.r suite and to the actual quality of life measures for
their patients being behind two surgeons are so committed to both the patients
and their families but also to outcomes is so important in today's medical
environment
I've gotten so much better at walking around I feel like I've gotten used to
how my brain is seeing it's less stressful it's less like alarming like
you were saying it's just kind of like my new normal and like I said I can
understand people better because I'm getting used to the way I hear and my
balance I can strut like I'm on a runway and I would like them to know that I
have recovered amazingly and I feel like that would not have been the case if
they hadn't done my surgery I feel like they did a fantastic job and the fact
that they've checked on me they FaceTime me it's just really nice to know that
they're still thinking about me not just like a patient it's like
well relationship