To cut to the quick, I had
a grade 2 brain tumor. Of course, I was shocked to learn this -
especially since it was causing no symptoms. It was found by
accident. I chose to have it removed. The removal was successful, but
for reasons still unknown, I suffered a near-fatal hemorrhage near the
brain stem - the brain stem controls your body's vital functions. I'm
fine now, and all doctors feel that there is an excellent chance that I
have been cured. I thank God, my beautiful wife, my neurosurgeon and
the ENT that sent me in for my MRI.
Here is my posting to the Brain Tumor
mailing list on the Internet (a wonderful support group!):
Let me start my story one year ago. I am
a computer consultant, and after making a lot of money for other
companies and enduring their bureaucracy, I decided to leave a giant
systems integration firm and start my own consulting company. In March
of 1997, I formed DataInsight and today we have hired the
people that I've worked with and respected over the years and we have
grown to slightly more than $ 2 million in revenues. I am also the proud
husband of a beautiful wife and father of two lovely boys age 6 and 1 -
1997 was not so bad, right?
Well, in May of last year I began experiencing cold symptoms. At
first, just a runny nose. Then, I was getting this roaring noise in my
right ear that would come for a few days, then disappear for a week or
two. I went to the family doctor, who gave me some nasal spray and said
that if it wasn't better in two weeks she would send me to an Ear, Nose
and Throat specialist. After two weeks, I was still getting the
occasional roaring in my right ear. On a climb of Pikes Peak, I decided
that I should go to an ENT after my upcoming vacation to my homeland in
Illinois. While in Illinois, I experienced a bout of roaring. Upon
return, I promptly saw an ENT. I checked out fine (unfortunately, each
time I saw a doctor, I was not experiencing the symptoms). This was late
July. However, he was concerned that my noise was confined to my right
ear. He said that he wanted an MRI done to check for an acoustic neroma.
He said that he rarely saw these (2 times a year) and felt that what I
was experiencing was just a gradual declination in hearing.
Both my wife and I had sinking feelings, and questioned whether an
MRI was necessary. Well, my MRI of the auditory canals was just fine.
However, while I was driving to work the radiologist called my wife to
state that I should come in for further MRIs. She immediately called me
on my cell phone and I had to pull over. My fears were mounting, right
in the pit of my stomach. I called the hospital and the nurse very
kindly told me that my MRI showed a shadow and they wanted to do some
MRIs from a different perspective. At my request, I got patched through
to the radiologist. He said that he saw a shadow above my right eye in a
"silent" area of the brain. He couldn't tell what it was, but had talked
to my ENT and wanted to do some further tests.
Shocked, I called my wife and told her that I would be coming to
spend the day at home. We prayed and cried that day, and the next day I
went in for additional MRIs. After a couple of days, I went to see the
ENT for the results. There was much confusion with the nurses to
schedule this meeting...apparently, they weren't aware that my MRI had
shown something. Waiting in the ENT's waiting room was, retrospectively,
perhaps the hardest thing we have faced throughout this ordeal. The ENT
reviewed the MRIs and said that he didn't think it looked like any tumor
he had ever seen. However, he wanted me to see a neurologist. When
trying to schedule the neurologist, he was out on vacation so he
referred me to a neurosurgery group. Fortunately for me, I was hooked up
with the neurosurgeon that everyone recommended to us later on - by many
people's assessment, he was the top man in the Rocky Mountain region.
The doctor met with us a week later, and unfortunately ruled out what
we were hoping for - an old injury (banged my head a few times on my
mountain bike). He said that the only thing he could not rule out was a
tumor. He also said that this "incidental finding" was very good for me
due to my age (32 at the time) and the location - right up front, above
my right eye, near the surface; and the fact that it was small and
caught so early. He recommended a follow up in two months.
October follow-up MRI revealed no noticeable growth. However, the
doctor was concerned that it was a tumor because it didn't go away. He
and his partners discussed my situation and recommended removal because
it was a relatively easy procedure and was such a favorable size and
location. I consulted the reputed top neurologist in the area for a 2nd
opinion. I wanted to get a non-surgeon opinion. He reviewed my MRIs and
did an exam, and concluded that the neurosurgeon right on the fact that
the only certain way to tell the nature of the lesion was a biopsy.
(Due to the favorable location, it was recommended that the difference
between a biopsy and a resection was small enough to suggest a
resection).
However, the neurologist said that his recommendation was not to do
surgery but just to do follow-up, because it looked to be a low-grade
glioma if it was a glioma. Both doctors stated that removal might reveal
that it was a "grade 0" - a hamartoma or something similar. After much
thought and prayer, the "not knowing" was more than my wife and I could
bear. I simply could not tell myself that the right thing to do was to
go on not knowing and getting MRIs, then one day find out that it had
transformed into a grade 3 or 4 and I would leave my family because I
was too afraid to take the risk of surgery.
Surgery was Nov. 18 and removal was successful. The surgeon removed
the tumor and a wide margin around it. Unfortunately, it was a grade 2
by preliminary tests. A 2 had been explained to me as "the worst it
could be" because it could turn into a grade 3 and eventually a 4. Grade
0s or 1s, it was explained, didn't tend to transform to 2s but 2s quite
often became bad 3s and eventually 4s.
After this initial shock (I still wasn't coherent, but my wife and
parents and friends were!), my wife was called at 4 a.m. the next
morning by a nurse who stated that I was going to be taken down for my
MRI a bit early because I wasn't that responsive. When I was taken down
for my follow-up MRI, I had a seizure. They paralyzed me with
medication, did the MRI and found out why I wasn't as responsive as
they'd like. I had hemorrhaged near the brain stem and the bleeding was
causing pressure that wasn't good.
The neurosurgeon wanted me to absorb as much as I could on my own. He
told my wife that this could take as much as 3 weeks in ICU, but he was
pretty certain that surgery would be necessary sometime during this
time. Well, the next morning he didn't like my responsiveness at all,
and I was wheeled in for my "bonus surgery" - 2 days later, Nov. 20th.
The hemorrhages were successfully removed and my responsiveness
improved.
Saturday, the 22nd I have vague memories. I guess I asked my wife for
my pants and announced that we were leaving the hospital, all while
confusing her with my nurse, who was a man. On Sunday, I began
remembering pretty much everything. I was still in ICU, and Monday a.m.
was going to be moved. I decided that this whole assisted bathroom
thing wasn't for me, and pulled out my IVs and tried to make it to the
bathroom. Well, I fell and then bounced my head (yes, the one that
hemorrhaged on me) against the tile floor. A CAT scan revealed that
fortunately I did no further damage.
On the day before Thanksgiving, I went home. I was thankful, but my
balance was still off and I was still numb from the whole ordeal. The
hardest thing for me has been not experiencing my ordeal and hearing
everyone else's version about it. Some family and friends were obviously
worried that I would die, and some even said I almost did. According to
my wife and Dr., I "could" have. So, for the month of December I stayed
home.
I was edgy. My wife felt that I was doing very well considering
things. I began exercising, and by Christmas had built my stamina back.
I started downhill skiing at the end of the year - 5 weeks after my
surgery.
I am doing very well now. I enjoy the things I used to.
Take care,
Steve Helle
survivor