Page 12 Success Stories

A.Jarvis
 I was diagnosed with Chiari in November 2000 after about a 6 month process of going through first my primary care physician (who thought I had a viral ear infection), my ENT (who also thought it was inner ear related) and finally to a neurologist who had the experience and knowledge to order an MRI. He thought it was a tumor or Chiari (and in fact was betting on a tumor) so I was actually relieved to get the real diagnosis. Through Dr. Nelson's contacts at UCLA, I got an appointment with Dr. Ulrich Batzdorf and ultimately had surgery on January 19, 2001. I was off work for 6 weeks and
have progressively gotten better since that time. Some of the dizziness is still there; my neurologist warned me that that might happen due to the degree of herniation. But nothing I can't live with. Ice skating professionally, kick boxing and rugby, etc. are out of the question but WHO CARES!

My symptoms included dizziness, equilibrium problems, neck spasms, coughing and sneezing attacks, headaches (not as bad as some), difficulty swallowing, incontinence problems, numbness in my fingers. Depression also. I believe the degree of herniation was about 25, fairly significant. Some symptoms I have had for years but didn't seem significant enough to go to a doctor. By the way, I am 51 years old (female).

What did I learn?

Don't give up. Invent the possibility of being healthy and honor that commitment. Get off the poor me racket and get moving. Take charge of your own research, including the selection of a surgeon. This is your brain we are talking about!

Turn it over to God and agree to cooperate - the path will open up. Lean on your friends; then let them lean on you. 
LIFE IS GOOD!

If I can help, please email me directly at ajarvis1@san.rr.com.

Kim Jensen writes:
Hello my name is Kim Jensen and my husband Harry was diagnosed with chiari malformation type I, but not until we went through a lot.  We started this in April of 2000.  It was as if over night my husband became ill.  He was experiencing memory loss, sever pain in his back, knees, hips, neck, he also experienced vision changes, headaches, fatigue, weight loss and many other symptoms.  We doctored for over a year, seeing every type of doctor there was and having test known to man done.  Nothing was found.  He then was diagnosed with fibromyalgia, only because no other reason for these symptoms.  We attended a pain program to see if we could help him to get his pain under control.  Then one day as he was talking on the phone he just "went out", collapsing and was not responsive, his respirations dropped to 4 and at one time he quite breathing.  The ambulance was called and he was taken to the hospital. 

 At the hospital is seemed that no one would believe what he was experiencing, he did come around at the hospital and the observed him for awhile, did an MRI (which they stated was normal) and sent us home.  I was livid, I'm a nurse and I knew there was more going on then they were finding.  I was told if this happens again to call the ambulance and bring him back in.  The next day I loaded up all our records and took my husband to the Mayo Clinic in Rochester.  They found the chiari malformation on the copy of the MRI from the hospital ER.  A doctor in from a closer distance was recommended for the surgery and we checked him out, as I knew him. 

 My husband felt comfortable with this Doctor and we did the surgery June of 2001.  He came through it with flying colors and is doing very well.  He is not back to pre-illness "normal", but he is 100% better.  Now and then he will experience some neck discomfort, but nothing like the pain and symptoms he had prior to the surgery.  We are so thankful that we continued to pursue and not just take certain Doctors word as to what was the actual problem.  My husband loves to build, he does construction and he was unable to do this when he was so ill.   He is now back to building and he is a happy camper.  He still takes things slower and does not do what he thinks will be to much.  He is loving life not having all the pain and the fear of passing out.  He even had to quit driving because of the passing out thing and he is back to driving.  He has regained much independence that he had lost.  This was quite a ride  for everyone in the family.  We have 4 grown children and they were very concerned and having a hard time understanding what was happening to their dad, who always went to their games and such and not could not even do that, because of the pain.  We are so thankful that this diagnosis was found and treatment of surgery was available.   We knock on wood everyday that Harry will continue to do as well as he is.  I would be happy to talk to anyone about our journey with Arnold Chiari Malformation.
I can be reached at nurseinga@hotmail.com