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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Chiari Malformation (A Mother’s Story)


By Jim and Chrys Hochstetler
November 2001

Jeff was totally disabled, wheelchair-bound and unable to attend high school due to an undiagnosed condition. We had been to 40 different doctors, driven many miles to such places as The Cleveland Clinic, Columbus Children’s Hospital, Medical College of Ohio and The Mayo Clinic. One group of cardiologists decided a pericardiectomy was the solution, but the stress of that surgery only worsened his condition. Labels such as Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS), and dysautonomia, became diagnoses of exclusion as doctors gave up looking for a treatable cause. Some were convinced that the problem was “all in his head."

Brain/spine MRIs had revealed the presence of a Chiari Malformation, the herniation of the cerebellar tonsils down into the spinal canal. This anomaly had been detected in 1996, six months into Jeff’s illness, and was obvious on two subsequent MRIs, but doctors saw it as an insignificant finding and chose not to tell us it was there.

After reading about the possible link between this deformity and Jeff’s condition, we finally asked a local neurologist if Jeff might have this malformation. When he confirmed the presence of a Chiari Malformation, he was quick to add that it was not responsible for his illness, and called it a “red herring.” But parental love leaves no stone unturned in the search for a child’s wellness. After nearly four years of complete debilitation, we prayerfully sought the opinion of Dr. Jon Weingart. We had found his name on the Internet, as one who surgically corrects the condition with some pretty remarkable outcomes.

Taking our very sick 17-year-old son, along with MRI films, on a nine-hour van trip to Baltimore was more than a little intimidating. We had no idea how this top-notch neurosurgeon would react to our speculation that perhaps the Chiari Malformation was the culprit in our son’s "mystery" illness.

Dr. Weingart was the first doctor to ever show us the abnormality on the MRIs. After meeting with us for barely thirty minutes, he concluded that Jeff might indeed benefit from the decompression surgery. “As sick as he is, and as obvious as the Chiari is, I believe the surgery could definitely improve the quality of his life. I never try to persuade anyone to have this surgery, but in your son’s case it would be wrong not to do it. He at least deserves the chance to get well.”

On Oct. 15, 1999, Jeff underwent a suboccipital craniectomy, C-1 laminectomy with bovine dural patch. The post-op pain was very intense, but the pain management team at JHH was superb in giving him the much needed relief. Dr Weingart told us that improvements would be extremely slow, and in fact there may not be any for at least two to three months. But even while still in the hospital, we began to see slight improvements in Jeff’s condition. Hands and feet were warm for the first time in four years, and his eyes, which had been very drooped, began to open wider.

Four months after the surgery, Jeff began to take a few steps during his physical therapy session. The therapist's comments indicated that Jeff’s muscles were beginning to show signs of improved tone and increased strength. His weak, frail voice grew stronger, and lights and noise were once again tolerable. Heart rates and blood pressures normalized. He began spending more time out of bed, as his energy level increased. He progressed from wheelchair to walker to forearm crutches to unassisted walking to treadmill exercise. There were tears among the therapists, who having once assisted with passive range-of-motion pool therapy, were now witnessing restored health to his lifeless body.

It has now been two years since the surgery, and Jeff once again has a life. He drives, takes walks, rides his bike, and has friends. Having missed all four years of his high school brought about the tremendous task of somehow making up those credits. Since he no longer fit in the age group of those students at school, he elected to make up those years through post- secondary options at the local Ohio State University Academy. Amazing as it may seem, Jeff is now ranked number “one” in the senior class due to his academic achievement at the college level. His greatest desire it to have the opportunity to attend a reputable college, and get an education that will allow him to be of service to others.

Words are inadequate to express our heartfelt gratitude for Dr. Weingart’s skill and compassion. He saw what other doctors did not see, did what others would not do, and gave hope when others gave up. By having the courage to perform a surgery that was somewhat controversial, because he felt in his heart it was the right thing to do, a young man now has restored health and hope for a future.

Thank you, Dr. Weingart for being God’s hands in fulfilling Jeff’s scripture of hope: For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

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