| Sharon
My 54th birthday was
one I will remember for the rest of my life. October 29, 2000 was
the day my life turned a corner. CINN called that day and confirmed
that I did, indeed, have Chiari Malformation.
In the spring of 1990 I recorded
in my journal, “I have developed a very painful condition this spring
in my neck and shoulders.” It was the beginning of eleven years
of extreme pain, frustration, anxiety, and an exhaustive search to find
an answer. After about two years my family doctor finally diagnosed
me with Fibromyalgia and Chronic Fatigue Syndrome. His words to
me were, “The good news is I now know what you have. The bad news
is there really is no cure for it.”
Over the next few years I went
to over 15 different doctors and specialists. I was tested for Cancer,
Lupus, MS, Graves Disease, Rheumatoid Arthritis and diseases I can’t even
pronounce.
In July of 1994 I drove to my
office with my head hanging out the window so I wouldn’t fall asleep at
the wheel. When I got to my office and turned the computer on I
could tell there were words on the screen but I couldn’t make my eyes
focus to read them. I shut my computer off and went home and promptly
went to sleep for several days. The company I worked for at that
time sent me home and told me to get well—they would take care of me.
Their idea of taking care of me was to force me to see a psychiatrist
for 10 visits and insisted that I pay for half of it. The psychiatrist
looked at me and said, “What do you think is wrong?” I wanted to
reach out and wring his neck.
In November of 1994 I returned
to work on a part time basis. In April of 1995 I had to quit.
It was 1 ¼ years before I was able to return to work and I spent most
of that time searching for an answer. I tried every herb and natural
remedy that anyone told me would do some good. I went for acupuncture,
chiropractic adjustments, massages, and osteopathic manipulations as well
as spending countless hours in doctor’s offices trying to find anything
at all that would help. By the time of my surgery in January of
2001 I was on ten different medications. I had been on painkillers
for at least five years. Without them I would have been in bed all
of the time instead of just a whole lot of the time.
I had pain in every part of my
body. I was dizzy, nauseated, had ringing in my ears, hearing loss,
blurry vision, headaches, irritable bowel syndrome. My memory was
so bad I had to write everything down. If I didn’t—it was gone.
I had whole conversations disappear. I was so absolutely exhausted
that in order to get up in the morning I would picture a rope beside my
bed. I would visualize putting one hand over the other to pull myself
out of bed—much like climbing a rope in a gym.
In February of 2000 my daughter
went to work for a company in Salem, Oregon. She called me one day
very excited. She said, “Guess what Mom—the company I work for sponsors
a Fibromyalgia research association. I am sending you a big packet
of materials.” A few days later she called and said, “You have to
watch 20/20 this Friday night. They are talking about a possible
cause for some people’s Fibromyalgia symptoms. It is called Chiari
Malformation.”
As I watched the program that
Friday night, March 6, 2000, something spoke to my heart, and I knew I
had found my answer.
The next week I was in my specialist’s
office asking for an MRI. He discouraged me but told me in order
to make me feel better he would order it. A few days later he called
and said they were seeing a Chiari Malformation but no brain compression.
A few days later he sent me an article out of the Wallstreet Journal that
very much disparaged the surgery. I visited with my family doctor.
He was also very cautious.
My feeling was, “What have I
to lose? Nothing else has worked.” I sent my MRI’s to Dr.
Heffez and began the long wait—several months long.
During those months I got much
worse. I remember very vividly thinking, “It would be so much easier
to just close my eyes and not wake up. But if I did that who would
buy Christmas gifts for the grandkids. I’ll keep going.”
On October 29th, the
call came. I was so excited I called all my family and told them
how thrilled I was that I was going to have brain surgery. I was
so relieved that there really was an answer—I wasn’t crazy, I wasn’t a
hypochondriac, there was a legitimate reason I had felt like death for
eleven years.
On January 10th I
traveled to Chicago. When I got to the airport my flight was canceled.
At the very last minute we got on another flight. My husband stood
by the window to make sure the plane got off and heard one of the airline
employees say, “It makes me so mad when people are late—what they really
need is brain surgery!” The other person working with her said,
“That is exactly where they are going!”
After two days of testing I was
operated on the morning of January 15, 2001. As I was coming to
I heard my husband say, “Oh honey you are so pink!” For several
months I had been gray—I just couldn’t get any oxygen.
I would never suggest this is
an easy surgery. Dr. Heffez warned me that it was a rough surgery
and a rough recovery. He was right. But living with the symptoms
I had was pretty rough as well.
It has now been three months
and I feel wonderful. I no longer have headaches, dizziness, nausea,
irritable bowel syndrome. I had a hearing test the month before
surgery. I was losing a lot of hearing in all ranges. I was
tested two weeks after surgery and my hearing was back 100%. I wake
up at 6:30 in the morning feeling good. I can shower, dress, do
my hair and put my makeup on without sitting down. That hadn’t happened
for a long time. I walk about 1 ¼ miles a day and have started working
out again on my Total Gym. I don’t head for the bed every time I
walk in the door. I never take a nap during the day. In fact
in less than three months I was back at work and loving it. I actually
have enough energy after work to go to the grocery store without having
to ride an automatic cart around.
I still have some pain in my
mid back but little by little it is lessening as I strengthen those muscles.
I think my husband summed it
up very well when we went to see Dr. Heffez on my follow up visit.
He said, “Dr. Heffez I want to thank you with all of my heart for giving
me back my wife.”
I thank Dr. Heffez for giving
me back my life. And thank you to the people from the NFRA for directing
my path to his door.
National Fibromyalgia
Research Association
PO Box 500, Salem, OR 97308
|
Compare
Symptoms