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 Douglas Ewing

 Where to start? In the summer of 1990 I was a successful art dealer, occasionally published writer and president of a professional association, all for just short of twenty years. I had raised my son from a pup and he was soon to graduate from Harvard. Within the next six years I had, in order: lost all my savings, been evicted twice, once by a landlord and once by a "friend," moved residence thirteen times, been accused of embezzlement and other malfeasances, been reported in the national press as having been convicted of that even though no investigation or procedure in law had ever taken place - with good reason. After declaring bankruptcy my status was changed from Chapter 11 to Chapter 7 by a hostile judge and all my physical property - plus that of my son and wife - was seized by the bankruptcy trustee, contrary to law, to be auctioned. My I.Q. was diminished by about 40%, I was chronically paranoid or depressed or both, and I was incapable of  processing new information.

 I had many new physical problems, too, including rapidly diminishing motor skills on my right side. I was unable to pay for necessary prescribed heart medication, medical care or legal protection, and a number of "friends" of many years, many of whom I had helped in a number of ways, including financially, somehow forgot me.  But not all. A new wife married just at the beginning of this period supported me in all ways; a few friends offered help when it was most needed. One of them, the psychiatrist L.A. Downs, M. D., who had known me well when I had been "healthy," sensed something was dramatically amiss. He pressed me to see a neurologist, and when the first and then the second "distinguished" specialist found nothing wrong he prevailed on me to keep trying. Stroke seemed to be the only remaining possibility so I went to see J.P. Mohr at Columbia - Presbyterian in New York. After taking my history, It took him ten minutes to diagnose me with ACM, that long because we had a common interest in offshore fishing and because he made his diagnosis slowly and aloud for the benefit of a visiting fellow in neurology.

As soon thereafter as possible, Paul C. McCormick, M.D., of Columbia - Presbyterian performed a suboccipital craniectomy and C-1 laminectomy, duraplasty with autologous thoracodorsal fascia and drainage and excision of a large (fist-size) posterior fossa cyst. That was on 6/24/96, thirteen days after my 53rd birthday.

The surgery turned on the light in the darkness that had become my life. Depression and paranoia disappeared; physical symptoms diminished slowly but definitely; my intelligence, such as it is, returned (this was actually recorded in psychological  tests taken before and after surgery). I have started a new business which is just on the edge of success after two years, in a new country (I had quite enough of the American adversarial legal system, thank you very much). Most of all, I now have a life, hour to hour, day to day, week to week. Three and a half years ago I could not remember a day that was not filled with despondency or fear; today I laugh through the day (but only at the appropriate places).

I am haunted by the thought that others, in similar condition, suffer similar assaults and indignities, but without the offset of eventual diagnosis and remedy.

Douglas C. Ewing  
Stockholm, Sweden
7/13/99

Andrea Tatro   I am a 22 year old female. About a year ago I was diagnosed with Arnold Chiari malformation. When I found out I was both happy and upset. I was happy because I finally, after years of suffering knew what was wrong with me. But I was also extremely shocked and upset that it was something so serious and that it required brain surgery. All my life I had symptoms of chiari such as headaches, fatigue, dizziness and nausea. I was also having a hard time swallowing. The doctors that I went to all attributed it to stress, but I knew that there was something physically wrong with me. About 4 years ago things started to get worse. I would get headaches every single day, and I couldn't do anything physical without my head starting to pound. It got so bad that I never wanted to go anywhere because I didn't know if I'd get sick or not. I felt like a hypochondriac because I was always sick and nobody knew why. But finally I switched doctors and she sent me for and MRI. A few days later I found out the results.
                 About 2 months after this I had the decompression surgery. I had the surgery on a Monday morning and left the hospital Wednesday afternoon. I had a pretty easy time of it except for Monday night-I was very sick from the anesthesia that night. For a few months afterwards I had a little bit of headaches, dizziness and nausea. My surgeon said that these were normal post-op symptoms. I went back to work a month later. I am now 8 months post-op and I can honestly say that I have never felt better. No more headaches, I can swallow fine now and am not  nauseas anymore. I still get dizzy sometimes but nothing major. I never expected to feel this good again. I feel like a whole new person and I have no regrets about the surgery.  I can finally enjoy life again!!!             
                    

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