Hello everyone! Welcome to Case Study # 27, this one the story of Brooke and her Sympathetic Nerve Schwannoma. We thank Brooke for kindly offering to share her story, and we hope that this case study is useful to those who are suffering from Sympathetic Nerve Schwannoma. - Neil
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1) How old were you at the time of your diagnosis?
I was 27 years old.
My grandfather on my dad’s side had a benign tumor removed
from his neck when he was in his 40’s. However, I do not think it was diagnosed
as a schwannoma. Other than that, nobody in my family has had schwannomas.
3) Where was your Schwannoma located?
And what were the symptoms that lead to your diagnosis?
My schwannoma was located on the left side of my neck,
high up in the neck and a few inches away from my jaw joint and ear. Originally
I was told that this was a vagal schwannoma, but after surgery discovered the
tumor was on the sympathetic nerve chain. I was having symptoms for years, all
on the left side of my body. Symptoms included horrible headaches, floaters in
my left eye, an off balance/dizzy feeling, muscle tension in my neck and left
shoulder, and a TMJ diagnosis.
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)
I had surgery in
January 2017 for complete removal of the schwannoma. My surgeon was experienced
in the surgery and was able to remove the schwannoma and surrounding lymphnodes
while preserving the sympathetic nerve. I would consider this a very successful
surgery. The total surgery time was under 2 hours and I stayed for one night in
the hospital.
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?
I think someone going through the same thing that I did
should write down any questions or concerns that they have regarding their
schwannoma, including the variety of treatment options that are available. I
met with my primary care doctor, two different surgeons, and a CyberKnife
radiologist all before making my decision. I was fortunate in that my
schwannoma did not need to be removed immediately, so I had a lot of time to
think about my decision and ask all of the questions I needed to. Make sure
that you understand the surgery before going into it, and also talk with your
surgeon about the recovery process. Even though the tumor will be removed, it
will take a long time for your body to heal completely after surgery.
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)
The first few days
of recovery were more intense than I had imagined. I could not bend my neck and
needed help to do everything. Sleeping was very uncomfortable since I could
only lay on my back in one position without turning. I had a surgical drain in
my neck for a few days, but when that was removed, a lot of pressure was
released. I slept a lot the first week of recovery. I also had a case of
Horner’s Syndrome (droopiness and sensitivity in my eye), but it was amazing to
see how much my eye improved each day. I had ice on my neck and jaw constantly
to relieve the swelling. I was on a
liquid diet for about the first week of recovery, since my whole mouth, jaw,
and neck would ache with any chewing movement. I was on the pain medication for
only about 2 weeks.
The most
surprising part of the recovery process that I did not expect happened 3 days
after surgery. I woke up and it felt as if I couldn’t swallow or breathe. I
went to the ER and they called in a head and neck surgeon to do a thorough
examination. They put a camera up through my nose and down into my throat. They
determined that the swelling from surgery had just gotten pretty bad, so when I
swallowed, it felt like a blockage. My airway was not compromised even though
it felt like it. They made sure I could swallow water and gave me stronger pain
medicine, and a steroid through my IV that immediately reduced the swelling.
The steroid’s effects lasted a few days, but then the feeling returned. I ended
up getting prescribed a week’s worth of the steroid and it helped a ton. That
was really the only setback in the last 3 months of recovery.
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)
Overall, I feel
so much better after surgery. The anxiety I had anticipating the surgery had
really taken a toll on my well-being. I have been schwannoma free for over 3
months now and feel like I can finally be normal again. I waited about a month
and a half before doing intense exercising, and now I am easing back into my
usual workouts. I was experiencing dizziness and an off balance feeling for a
year and a half leading up to my surgery, and now that is gone. I am feeling
great!
You can email Brooke at: more.brooke
