Harry's story
Harry had been experiencing
memory loss, severe pain in his hips, back, neck and knees.
He also experienced headaches, vision change, fatigue, inability to
sleep, restricted movement, nausea, weight loss, and a burning sensation to his
feet and hands (sound familiar?). After
he had been seen by several specialists and had undergone every test imaginable,
he was diagnosed with Fibromyalgia (there appeared to be nothing else wrong).
Harry entered a six-week pain management program to help alleviate the
pain. It seemed to help, but one
day while on the phone he collapsed, was non responsive, and at one point quit
breathing. He was rushed to the
hospital emergency room. After he
came to, the severe pain hit. He
was given pain medications, had another MRI
(which was “normal”), was observed for a while, and then sent home.
Harry’s wife, Kim (a nurse
at Rapid City Regional Hospital), did not believe that these symptoms were a
part of the Fibromyalgia diagnosis. What
really concerned her was the passing out.
This had resulted in a loss of
independence for Harry because he could
no longer drive.
Kim took Harry to the Mayo Clinic in Rochester. A neurologist found that he had a chiari malformation. This is when the cerebellum (the back part of the brain) has what the doctors call tonsils protruding out of the back of the skull. This area would swell with the change in spinal fluid due to sneezing, coughing, and even during a bowel movement. These tonsils would then have nowhere to swell and would put pressure on the brainstem. The brainstem is the overall connection between many functions, including breathing.
Next, Harry was seen by a Mayo neurosurgeon.
After discussing options and potential
further problems if the tonsils were
to continue to grow, he recommended
surgery. He also recommended that
the surgery be done in Rapid City and said that neurosurgeon Edward L. Seljeskog was familiar with the procedure.
They
followed Mayo’s advice and had the surgery done in
Rapid City by Dr. Seljeskog. It was
a very lengthy procedure. They
opened the back of his neck down to his brain
stem and removed bone from the skull to make the opening
at the back of the head bigger to accommodate any swelling.
In some cases they remove the cerebellar tonsils, but they felt that Harry’s
were not long enough to require removal.
Then they removed the membrane over the tonsils and brain stem and
replaced it with a membrane that would give a
little with the swelling of the tonsils.
They also did a laminectomy, a surgical procedure
that removes part of the vertebra to relieve pressure on the spinal cord or a nerve branching from the spinal
cord, and fused some of the neck bones together.
Today Harry does not have the
pain in his knees,
back, or hips. He does experience neck stiffness and discomfort at times,
but states it is nothing like what he
had before. He has increased neck discomfort with the cold weather, but the majority of his symptoms are
gone. He can drive again,
regaining the independence that he had lost.
If you have any questions or comments, Kim or Harry can be reached at nurseinga@hotmail.com or you can call 605 754-6106.
Editor’s note:
This article was written to bring you information on the controversial
chiari malformation surgery. The
medical profession is divided on the procedure. About half of the physicians believe that the chiari
malformation produces Fibromyalgia-like symptoms and that the symptoms
can be relieved through the surgery.
Dr. Seljeskog wrote, “The relationship between chronic fatigue
and Arnold Chiari Malformation is very tenuous based on my knowledge of the
subject. There have been several studies that have disproven a relationship.
Mr. Jensen’s symptoms were not those at all related to chronic fatigue
or Fibromyalgia, but were entirely different.” From what I’ve read, the test
of choice to diagnose the Chiari Malformation is the MRI (magnetic resonance
imaging). The MRI will show if there is crowding of the space between the brain
and spinal cord. The treatment of
choice is surgery to decompress the area
for persons with Chiari Malformation, symptoms associated with the
malformation, and clinical findings on examination.
When my co-worker, Harry, was diagnosed with Fibromyalgia, I thought to
myself, “This is the worst case of
Fibromyalgia I’ve ever seen. There’s got to be more going on here.”
The main difference was his passing
out and the extreme pain. After his successful surgery, I wanted others
in our support group to hear Harry’s story.
My thanks to Kim and Harry for sharing
their story.