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Personal Stories

Carol Jean's Story

Iím writing my story to share with all of you that read the Chronic Fatigue/Fibromyalgia newsletter.  In the January issue I read about Harry Jensen and his experience.  I knew I had to go to the February meeting and hopefully meet Harry and his wife Kim.

My name is Carol Jean Downs.  I am a retired teacher and my husband and I live near Black Hawk.  Several years ago I noticed whenever I would tip my head back I would get dizzy.  I found doing several things like hanging curtains, reaching in high cupboards, changing a shower curtain, working on the bulletin board at school, or getting my hair shampooed at the beauty salon would immediately cause me to become nauseous.  I learned to compensate for many of these things by using a step stool to reach high places.  I mentioned these things to my doctors and received many different responses of which I wish I would have recorded, and now cannot remember.

In 1992 I was diagnosed with bursitis by Dr. Sabow which they later called Fibromyalgia.  As the year went by I had strange symptoms.

I was diagnosed with B-12 deficiency by Dr. Vogele and started B-12 shots.  He sent me to the Mayo Clinic in 1993 for a checkup.  This illness causes symptoms of the nervous system.  It is corrected by taking a B-12 shot once a month.  These things didnít seem to end my problems.  I continued having dizziness, numbness down my back, vision problems, rapid heart beat, nauseasness, and elevated blood pressure.  I was in the emergency room many times.  They would keep me a day or two in the hospital and send me home.  Dr. Hanna ordered a MRI of my head.  I was then set to Dr. Ganz and he said I had Arnold Chiari Malformation I.  He said he would do the surgery, but wanted to clarify some of these other symptoms first.

Dr. Bochna arranged for my appointment at Mayo Clinic in Sept of 1999.  They found I had hyperparathyrodism, Chiari Malformation I and Fibromyalgia.  I had surgery for the thyroid problem.  They suggested I go home, recover, and come back in a couple of months for the Chiari surgery. 

The symptoms from the thyroid problem disappeared, but the others got worse.  I had additional tests from the neurology clinic in Rapid City and from Dr. Carlson for my ears because I was so dizzy.  Soon my blood pressure became so high that Dr. Hanna hospitalized me to control it.  A week later in March of 2000, Dr. Ganz did the surgery for the malformation.  The lower part of my brain was protruding down into the area where only the spinal cord was supposed to be.  The doctor removed a cap of the bone from the base of the skull and also removed a cap of bone from the first and second vertebrae in my neck.  This relieved the tension or pressure on that area and allowed that small portion of the brain to go back up where it belongs.

After a ten day stay in the hospital and physical therapy for three months I was on my way to recovery.  I am feeling well again and able to enjoy life.  This was the reason for all those strange symptoms over the years and as I got older, they got worse.  I feel fortunate to have such caring doctors here in Rapid City.

There has been controversy over whether or not this surgery will cure fibromyalgia.  The surgery cleared up the Chiari Malformation I symptoms (dizziness, numbness down my back, vision problems, rapid heart beat, nauseousness, and  elevated blood pressure), but I still have Fibromyalgia.   In my case I do not believe that it has any connection, even though Iíve gotten some relief from the Fibromyalgia.  Last August I had bursitis in my shoulder and Dr. Hanna gave me a cortisone shot.  It took away the pain and gradually my arm got better.  However, the next morning I was not stiff and after a few days I realized I was feeling so much better.  Fibromyalgia must be a form of arthritis that for me responded to cortisone.  It has been the only thing I have taken that has given me relief from the symptoms of Fibromyalgia.

    Coral Jean Downs

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