I have to give all credit for my
surviving through surgery to God. It is through prayers and
His Grace that I am here today to write this story.
These paintings are the works of Danny Hahlbohm.
I couldn't decide on just one so enjoy the wonderful
paintings. The link to Danny's page is below.
This is a picture of me taken June 6,1997.
Three days before D day !
It all started back on March 7, 1997.Disclaimer: The following information is not intended as medical advise. The experiences related are those of one person's, mine. Each person and experience is different.
Should you suspect you or someone else of having an Acoustic Neuroma, seek professional medical advice.
I went to my family doctor to see why I was losing my hearing.
Being that I was only 35 I was concerned.
It had been progressively getting worse for 9 to 11
years. After checking me over he couldn't
find anything wrong so he sent me to our local ENT.
My first appointment was March 31, 1997.
Dr. Bland did all of the initial tests and then
took me for a hearing test to see if that would
tell us something. The test showed that I had
hearing loss in my right ear but didn't show why.
He then scheduled me for an ABR,
a test that is more detailed and hopefully
would show us the reasons why I couldn't hear.
Well, much to everyone's dismay, it was inconclusive.
I was then scheduled for an MRI on April 23, 1997.
The test itself scared me, I had never been through
one of these before. It was done at my local
hospital with and without contrast. After a week
the results were in. My ENT doctor called early
one morning, woke me up, and told me that I had
an excessively large tumor. It was one that he
wasn't comfortable dealing with so he asked if it
would be ok to refer me to Morgantown,
which is about 30 minutes from my house.
On May 12, 1997, I met with Doctor Stephen
Wetmore. He reviewed the MRI films and
reports and confirmed that it was a large AN.
He was very understanding about our concerns
and showed it to us, at the same time he told
my husband and I that the tumor was so large
that surgery was the only option. It was so
much for me to swallow. I guess I was
in denial. I worked and took care of my family
like nothing was wrong.
On June 2, 1997, I saw a neurologist, Dr. Voelker,
who would be assisting with the surgery.
It was his job to actually remove the tumor.
Dr. Wetmore would get in and work around
the 8th nerve, the hearing nerve, and equilibrium.
I also had all of my pre-admission testing done,
EKG, blood work and chest x-ray.
By this time I had already taken leave from work.
There was a mountain of things I had to get done
before surgery. The most important thing to me
was getting back into the church. The priest was
very understanding and even though I told him what
was going on he said that now more than ever
I needed to be right with God. It scared me more
because I didn't know what the surgery would bring.
Everything I did was like doing it for the last time.
My husband, Tom, and I renewed our wedding
vows in the church on June 6, 1997.
Surgery was scheduled for June 10, 1997.
On Monday night before surgery I cried a lot.
My Mom and Dad came down from Pittsburgh to be
with my family and myself. I hardly got any sleep.
On June 10, 1997, we went to the hotel where
Mom and Dad were staying so they could spend some
time with me. We arrived at the Ruby Memorial
Same Day Care Unit at 5:30AM. This is where they
check you in for surgery and prep you,
start your IV. Father Harry gave me the sacrament
of the sick the day before but I still asked for
a priest to come in, just to say a prayer.
I didn't think it would hurt. Mom and Dad took
communion while I was waiting, I couldn't
because of the surgery. Mom couldn't handle
things anymore and started to cry. But good old me,
still in denial, calmed her down and said
everything would be all right. Finally a
little before 7:00AM they got ready to take me up
to surgery, Tom, Mom, Dad, and my children,
Steve 16 and Tisha 14 all went with me.
As we got off of the elevator they all said
see you later to me, I wouldn't let them say
goodbye, and went to the waiting room.
This is the time I would start to cry, I was
really scared and didn't know what would happen.
I didn't know of anyone that went through this,
so I had nothing to go on.
There were so many people in the operating room
I didn't know how they were all going to be able
to do their jobs. They gave me something to relax me,
they could see me shaking. There were nurses on
both sides of me holding my hands, they
were all so nice and considerate. Finally they put
me to sleep. Surgery took 20 hours,
the staff was very considerate towards my family
calling every 2 hours letting them know how
everything was going.
The only way to remove a tumor this large was the
Translabyrinthine approach. In lay terms the
incision was made behind but around the ear,
the mastoid bone removed, the inner ear structures
removed, thus destroying the hearing to my right ear.
Finally surgery was over, they took me straight to ICU.
My family got to see me at 3:30AM on the
11th of June. I stayed in ICU for one day and then
was put in step-down for 2 days. I don't remember
much about that time except my head hurt
and my belly was sore.
They took fat from my stomach to seal off where
they drilled the hole in my head, this was to keep
brain fluid from seeping through. When they finally
moved me to a regular room I was more alert.
That's when I realized that I had facial paralysis,
my right arm and leg were also very weak,
I couldn't control movement. I also had double vision.
I was released from the hospital that following Sunday.
Home was a welcome sight. I needed help walking
and eating. I had a hard time swallowing.
The first couple of days I spent at my in-laws,
they only live two doors down from me. On
Tuesday I went to my house, since my daughter was
taking care of me I really didn't need to be down
at my in-laws anymore, and they were close enough
that if anything happened they could get to us quickly.
Tisha cooked, made sure I ate, and from the
beginning fed me. Steve washed clothes and together
they kept the house clean. They are just kids
yet gave up their summer for me. When Tom would
get home he would relieve them. I had to use
artificial tears through the day and lacri-lube
at night for my eye.
On July 3, 1997, I had my follow-up visit. Stitches
were removed. The doctor was upset with my
walking. He thought I should have progressed
better than I did. Because of the facial
paralysis he scheduled a second surgery,
reattachment of my facial nerve to one of
the two nerves under my tongue and a gold weight
implanted in my eyelid, so I could blink.
I still had my double vision.
On July 14, 1997, I saw the doctor again,
he seemed to be ok with my progression this time.
I had the pre-admission testing and was sent to
the optical department for my vision.
On July 29, 1997, I had my second surgery.
This one would take 5 hours. They told me that
the nerve reattachment would take 6 to 8 months to heal.
On August 25, 1997, I had my follow up with Dr. Wetmore.
Everything was healing ok, stitches were removed.
Now the inside stitches were getting infected.
I had to have my neck lanced two times and it
opened three more times on its own
before it finally healed up. Even though my double
vision is still present, my eye is going back into
place. The doctors were surprised to hear I had
been doing exercises that my Dad and my Aunt used,
whatever works I was going to try.
On September 12, 1997, I had to see Dr. Ellis,
the vision doctor. He's talking about giving me
a pair of glasses with a prism in the right lens,
to correct the double vision, then
I can finally get rid of this patch.
As of now, almost 4 months later, I still have
a long way to go on my recovery. I just hope I
can do it.
During all of this my family has helped me
a great deal. Steve and Tisha,
my children have given up their summer to
take care of me. My husband, Tom has been
the biggest support of all. It seems like he
always knows just what to say and knows just
when I need to hear it. Without my family
I don't know where I would be today.
As of today, September 30, 1997, I still have
weakness on my right side, double vision and
facial paralysis. My speech is also slurred
some but not as much as it was in the beginning.
I still use artificial tears and the lacri-lube
for my eye.
I had another Doctor's appointment today,
October 6, 1997. Everything seems to be going
as expected. I also found out today that my tumor
according to the MRI was 3 x 2 cm and had
pushed my brain stem across the midline to the
left side. They had told me when they first did
surgery that the tumor was larger than expected.
That probably explains the weakness on my right side.
I also found out that the gold weight that was
put in my eyelid weighed 1.5gm.
On Tuesday, November 25, 1997, I had an eye
doctor appointment with Dr. Ellis. Finally,
some good news, the double vision is gone!
I got to take the eye patch off for good.
Now my eye just needs to strengthen up as it
is weak from being covered for so long.
Now I am done with my appointments until
after the 1st of the year.
January 5, 1998, I went back to Dr. Wetmore. This
time I didn't get the news that I was hoping for,
it doesn't look like the reattachment is going
to work as expected. While my face, when just
looking at me appears to be fairly normal,
I now have a gap between my lips making
eating nearly impossible. I have lost 23
pounds since my last visit to him three
months ago. If I get back any movement on
the right side of my face he is only expecting
it to be minimal. I go for neurological testing
February 3, 1998, to see just how much nerve
damage I do have.
Well, it is now July 13, 1998, I know that I haven't
updated this in a while. It has been a little over
a year. I went to the doctor last Friday.
It seems that I forgot to write a very important part
of the reason that my recovery has been so hard.
Please forgive me because this detail explains a lot.
You see the reason the MRI wasn't accurate is because
my acoustic neuroma had tentacles growing from it
going into my brain. The balance problems that I
presently have are here to stay. I had to break down
and buy a cane to help me. I go back to the eye doctor
this coming Friday, the vision in my left eye is
weak still so I am afraid that I may have to get glasses.
December 16, 1998. I had a follow up MRI today
both because it was due and I have been having headaches.
Once I got past the needle for the contrast, the rest
was a piece of cake. My cousin laughs and says "Gez,
you went through 20 hours of brain surgery and you are
afraid of a needle." The preliminary report from the MRI
shows no tumors. The radiology report will confirm his
findings. I don't have to go back till June.
March 1, 1999. I haven't updated this in a while, I did have
an eye appointment a month ago. I don't understand what
is going on but now I am going color blind. Dark colors
right now all look black to me. I am also loosing my sight
in my right eye quickly. They were very surprised at just
how much it did change.
February 1, 2000. I have all but stopped adding to this page,
as of right now things have not changed at all, so I don't expect
miracles anymore. I know that nothing is going to ever change now,
if I can only convince myself this is as good as it gets.
One more note....Please don't let this story scare you into thinking
this is normal. Fact is 99.9% of all acoustic neuroma patients return to
normal everyday pre surgery life. I happened to be one of the unfortunate
ones who didn't. I have listed below in the drop down links to other AN Pages.
Please take the time to visit them, you will see for yourself.
Thank you,
Debbie Johnson
THANK YOU AND ENJOY YOUR STAY !
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