Welcome to Schwannoma Case Study number seven, this one an anonymous person who had a Schwannoma at L2-L3 and only a partial removal. Though the person chose to remain anonymous, we sincerely thank them for sharing their story in hopes of helping others! - Neil
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1) How old were you at the time of your diagnosis?
I was 48 years old.
2) Do you have any
history of Schwannomas in your family?
No.
3) Where was
your Schwannoma located?
The June 2006
neurosurgeons review of my MRI showed an intrathecal mass in the L2-L3 area
that occupied ½ of the spinal canal. The
surgeon felt that it likely represented a cystic schwannoma or menignioma. He ruled out ependymoma as that tended to be
at the conus medullaris, which is in the L1-2 area. It looked smooth and without evidence of
bony destruction and he felt that it likely to benign. He stated there were no other options to
consider but surgery to obtain a diagnosis and eliminate the tumor. It was scheduled for July.
4) And what were the symptoms that lead to your
diagnosis?
I have always been a very
active person. I remember my first
noticeable pain in 2003 (age 45) when I was walking a flight of steps and had
skipped over a few at the bottom and landed on the ground. I suddenly had this sharp pain on the right
side of the groin area and along pain the inner upper right thigh. After feeling the pain for about six months
off I saw my family practice doctor. It
was found that I had a very small hernia on the lower right side groin so
surgery was ordered for Oct. of 2003. To
me it seemed logical, as I was prone to lifting heavy things and thought this
seemed logical. Following this minor
surgery in, I continue to feel pain. I
was thinking it was possible adhesion pain so I revisited the surgeon and for
about 3 months and received cortisone treatments. There was temporary relief. My primary care physician prescribed vicodin
for pain and I would feel fine for periods of time.
I was continually prodded
by my husband, who would witness my pain attacks, to continue to seek better
answers. So from early 2004 until my
2006 MRI which revealed the tumor I felt like a pin ball bouncing from one
specialists to the other. I was sent to gynecologist because maybe it was
endometrosis. It wasn’t. In hindsight the groin pain was what seemed
to be what was resonating more when I spoke to my family practice doctor
although sciatic was also brought up as a possible condition.
In December of 2005 I went
with my Mother on bus tour to Branson Missouri, I was the youngest person on
the trip. I think it was over a 12 hour
bus ride spread out over two days. After
eating a buffet I suddenly felt horrible pains once again in the lower groin
area. The only way I could describe it
was that it felt like something inside this area was twisting. That night in the motel I couldn’t lay down
to sleep because the pain was horrible when I was in a prone position. I was constipated and I remember walking the
hotel hallways because the pain less intense. The next morning I was loaded on
the bus (more sitting) and by mid morning at our first stop I called my doctor
back home and said I needed some kind of pain pills (vicodin) to which an order
was faxed to the Branson pharmacy. While
the rest of the busload went on a dinner boat show ride I laid in the motel
room in pain; even vomiting probably because I was downing the pain pills like
candy. When my Mother returned I told
her and the bus tour person that I needed to go to the ER; so off I went. After 4 hours in ER I left being given the
diagnosis of bowel obstruction issues and given some pills. I felt better gradually. The next day every senior on the bus tour had
some medical story to tell me in which they felt was my condition!
Once back home I saw my
family practice doctor about my episode. At one point, I was sent to a
nutritionist because based on the ER diagnosis of bowel issues they thought it
might be food allergies or lactose intolerant.
I had a CT scan, nothing showed up.
Then I had a colonscopy performed; once again nothing irregular showed
up.
I was getting frustrated
and feeling lousy I decided to visit a chiropractor seeking sciatica
relief. I noticed more pain after days
when I wore high heels or doing certain exercises like sit-ups. With weekly treatments I thought I was
feeling better or at least I wanted to convince my husband that I was. In hindsight I’m surprised this manipulation
didn’t cause more trauma to the cord. I
do remember my last treatment. I
climbed off the table and had an extreme spasm in up the lateral and anterior
thigh. After that episode, I sought out
acupuncture. It provided noticeable
relief but because of the costs I had to back off the number of treatments.
In May of 2006 I was in
having my annual physical and while in the doctor was doing one of the tests I
had an acute twisting in upper inner thigh area. Having witnessed this and she immediately
said this has to be nerve related and that’s when the MRI was order.
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 underwent partial L2 and
complete bilateral L3 laminectomy removal of schwannoma. The tumor was found to be arising from either
L3 or L4 nerve root on the right side.
The surgeon was surprised to note the tumor arising from the motor
branch because more than 90% of the time this type of tumor arising from the
sensory branch and the tumor could be removed totally with the sensory
nerve. In my case, the nerve that was
the origin of the tumor remained active.
Every time the nerve was stimulated during surgery a strong muscle
contraction was noted. After he
consulted with my family, none of them wanted to take the risk of causing grave
danger to this motor nerve and my right thigh by removing the nerve with the
tumor so he shaved the tumor off the nerve.
Estimating 60% of the tumor. It was
confirmed benign schwannoma.
From the surgeon’s notes- Initially, the tumor was not visible when
they first began surgery. However, after
all nerve roots were mobilized laterally to the right side and the tumor was
located anterior to cauda equina and became visible. It was well capsulated and smooth, with
multilobes. The nerve appeared to attach
running along the wall of the tumor. The
tumor was felt to represent a schwannoma arising from the nerve root which,
after stimulation, was found to be the L3 or L4 nerve root because that nerves
appears to a be a motor nerve which is not typical for a schwannoma to arise
from a motor branch. Every time it was
stimulated a strong vastus lateralis muscle on the right side contracted
strongly. The nerve at the distal
portion of the tumor gave a strong muscle contraction when it was
stimulated. However, at the proximal
portion of the tumor and the nerve proximal portion of the nerve, it required a
1.2mA to produce muscle contraction. The
contraction by stimulating the proximal portion of the nerve was also noted to
be weak, less that 50% of the distal nerve when it was stimulated with
0.4mA. Since the monitor indicated that
he tumor was arising from the motor branch which is unusual, the decision after
consult with my family, was to shave it.
However, because of bleeding, by doing so might result in damage to the
nerve with bipolar electracoagulation in the process of controlling the
bleeding, they had to accept leaving a portion of the tumor slightly away from
the nerve itself. After shaving it was
felt that 60 to 70% of the tumor was removed.
Based on the EMG monitor, it was felt that the tumor was arising from
the motor branch of the L3 or L4 nerve because that nerve innervated the right
vastus lateralis muscle.
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?
Well, experiencing only a
partial removal, I would pose these ‘what if” questions prior to the
surgery. I was told my surgery would be
4 hours with the outcome full removal.
It was seven hours because of the surprises encountered when they found
the source of the nerve. I think as the
patient it would be beneficial to be in a position to be as informed about what
situations could arise if they are unable to get the whole tumor. This question never crossed my mind prior to
the surgery.
I felt lucky with my draw
of surgeon as he was a very seasoned and well respected neurosurgeon in the
Madison, WI area. I think it’s important
to know the number of surgeries of this type they performed and their success
rate.
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)
I remember having a
horrible back pain while in intensive care.
The nurses rolling me throughout my time there and walking to the rest
room created great pain in this operated area of my body. But I was lucky to not have any complications
and was released to spend 8 days in rehabilation/therapy section. I took my pain pills as prescribed so that I
could get the most out of the therapy. I
went home and followed all directions like walking and I weaned myself off pain
pills. I was back to work after 8
weeks.
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)
I would like to mention
that I received twice weekly acupuncture treatments prior to my surgery. I wanted to prepare my body for the surgery
and also did regular treatments from until 2010. I exercised regularly and adopted a healthy
diet. During this time I had yearly
MRI’s done that showed no tumor growth.
I was active doing all my normal activities including biking, cross
country skiing, yoga and walking.
In 2011, there began major
live style changes related to my husband’s transfer to another state for his
job, my job became increasingly stressful, financial issues, death of both
parents, and eventual retirement and relocation to the state of KY. During these years I started to neglect a
healthy life style. The MRI of 2013 and
2014 showed tumor growth which now leads me to the “what next” phase of
revisiting surgery.
I had about four
noticeable spasms/pain since July of 2012.
One came as a result of a morning stretch that caused severe spasm/pain
in the inside muscle of my right leg.
The others resulted from movements that put the right leg in weird
positions (water aerobics and a yoga position).
In January of 2013 I visited a neurosurgeon who advised on the growth
but said we would just monitor it and to come back in a year. He went into the slow growing dialogue; minor
nerve loss in right leg when monitored.
I have to admit after meeting with him I had no intention of seeking his
counsel again as he didn’t have the personable touch that I had received from
my surgeon in Wisconsin.
In January of 2014 I had
an episode of drop foot; right foot. It
last about 3 weeks and so off to my family practice doctor I went. She provided the name of a neurosurgeon but
also sent me to an ENT after I complained about ringing in my ears. I met with the ENT and stated hearing loss in
my right ear, possible tintinus or allegies.
I informed him of the schwannoma cells in the lumbar area and so he
ordered a brain MRI as well as prescribing allergy meds.
April 21, 2014 I met with
the new neurosurgeon who reviewed both my new lumbar MRI and brain MRI. Nothing in the brain that was a welcomed
relief but the lumbar showed minor growth from the MRI of 2013. He was very interested in my 2006 surgery and
has ordered a cervical spine and thoracic spine MRI and a lumbar spine with
Cyberknife protocol of the L1-L4 area.
This will happen on May 5 and my husband and I will meet with him on May
12. He noted once again minor nerve loss
in my right leg and the slow growth of schwannoma. He emphasized the outcome of taking no action
being paralysis and incontinence. He
described the Cyberknife procedure that has now been the fascination of my
google searches! He was very
enthusiastic about this non-invasive surgery.
A second opinion will probably be considered as my husband’s insurance
does cover surgeons at John Hopkins which is 8 hours from my home. My hope is that the cervical and thoracic
spine MRI’s do not show tumor growth.
On April 24, I visited an
acupuncturist and had a treatment as well as cupping. I intend to journal my treatments and how I
am feeling. It’s my hope to get my body
prepared for whatever future surgery I may need and also for the benefit of
anyone else who may wish to include this as part of the wellness prior to a
surgery.
