MY CHIARI STORY

 

Sharon Oram

 

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 ½ 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 ½ 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 Rae and the people from the NFRA for directing my path to his door.