Family is important. Knowing your family history is important, especially when it contains critical medical information.
The Worth side of the family carries a fairly rare genetic code for a condition that may or may not be life threatening. Ignorance is bliss. Knowledge is power. I will tell the story that I have repeated over the years. Direct descendents from the Worth side of the family need to pay close attention.
These are my handsome sons now.
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| Tom |
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| Nate |
It was 1993. We were living in Portville across the street and down a few houses from Mom and Dad. I was teaching in Portville.
Nate had a regular eye exam at Dr. Mortimer's office and, during that exam, Mike asked, "Has Nate had a black eye recently?" In fact, Nate had taken an elbow in the eye during a back yard football game just a couple of weeks prior to the eye exam. What Mike was seeing appeared to be bleeding in the back of the eye. I agreed to bring him back in a month when I had my annual exam.
A month later there was no change in the back wall of Nate's eye. The apparent signs of bleeding were still there. And then Mike found the same thing in my left eye. It was time for a family referral to an ophthalmologist and Tom was going, too, just to be safe.
Dr. Alwan dilated our eyes and broke the news. Tom had them too.
What were they? They are called cavernous hemangeomas. They are present from birth. They do not grow. They are not a tumor, but they can bleed. It is where they are that gives cause for concern, so Dr. Alwan sent us the University Eye Specialists in Warsaw, NY.
UES is a teaching facility and many residents and interns were paraded through to get a look. "You have got to see this. You will not likely encounter this clear, family manifestation ever again in your career." It was here that I learned that these abnormalities in the capillaries can be anywhere in the body. All three of us were sent for full body scans - MRIs.
The results were not what I wanted to hear. Nate and I only had them in the back of one of our eyes. Tom had one of these buggers in the front, left lobe of his brain, half the size of a golf ball.
Next stop, Buffalo Children's Hospital and Pediatric Neurosurgeon Dr. Mark Diaz. An angiogram was ordered and completed. Recommendation: Take it out.
Whoa. Brain surgery? Tom had no symptoms, or so I thought. A second opinion was in order. Dr. Diaz supported my thinking and off we went to the Cleveland Clinic ~ Pediatric Neurosurgery . Tests were repeated. Recommendation: Leave it alone.
Yikes. Imagine me standing with both my hands extended out, weighing the two opposing recommendations like this:
Now imagine me bringing my hands together like this:
I laid a fleece before God. I needed a clear, direct answer, nothing subtle that I might miss. I prayed and I waited, but not for long.
Back then I subscribed to Reader's Digest. When the next issue was delivered to my mailbox, Dr. Fred Epstein, a renowned pediatric neurosurgeon at Beth Israel Hospital in New York City was featured on the cover. Nothing subtle about that. I had my answer.
I got the phone number and I called. I expected a receptionist or a nurse to answer the phone. He answered. He listened as I told our story and said, "You have done all of the right things. You do not need to spend the money or take the time to come to NYC. Send everything to me and I will give you an opinion."
I did and he did. Recommendation: Take it out. "If Tom is not already having symptoms, he will likely have troubles by the time he hits his early 20s." Dr. Fred Epstein never sent a bill. He was our angel and, ironically, died in July 2006 after his own serious brain injury from a bike accident, ending his career only able to watch brain surgeries.
I had my answer from Dr. Epstein and opted to return to Buffalo Children's Hospital and Dr. Diaz. Surgery was scheduled.
The night before the procedure I was allowed to stay in the room with Tom. At about 2 a.m. a nurse came in to start a saline drip as he was first on the table. Within the hour I witnessed my son having a grand mal seizure. God provided yet another assurance to my lingering doubt that brain surgery was being performed on my boy who exhibited no symptoms.
Surgery was postponed. Dr. Diaz said that Tom was likely having night seizures all along and we just didn't know. An anti-consultant was prescribed. A seizure on the table could have been catastrophic.
Tom's rescheduled surgery was on the same day, at the same time that my Uncle Sal died in Connecticut, September 28, 1993. I had a vision and saw Uncle Sal with an angel under the tree where he died. Uncle Sal went for Tom. I believe it with every fiber of my being.
Tom is 30 now and, with nudging, sees a neurosurgeon. He has many more miniscule hemangeomas in his brain, the largest is 8mm. I have concluded they were always there, but so small that they were undetectable in 1993 or the big one was the main concern and that was treated.
There is more to this story. Remember, this is a story about family genetics and good eye exams. It is also is a story about faith and God's love and power.
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| This is Emery Jay Worth, my father's father. He died when Dad was just 13 years old of an unexplained cerebral hemorrhage. |
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| This is my first cousin, Barbara. She is six years older than I am. Her father, Jay Worth, was my Dad's oldest brother. In her 30's she ended up in a wheel chair. The explanation then was some kind of virus settled in her spine. After Tom's surgery and an eye exam, Barb's doctor's concluded that likely it was a cavernous hemangeoma on her spine that bled and burst, leaving her paralyzed from the waste down years ago. Back then they didn't have the technology to diagnosis it. |
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| This is my first cousin, Connie. She is ten years older than me. Connie's mother, Betty, was one of my Dad's older sisters. Connie has had brain surgery because of cavernous hemangeomas, as has her daughter, Denise. For many years after her surgery simple monitoring was enough. This is not the situation now. Connie has been under complete medical care for more than two years in Daytona, FL, for long periods of time in a drug induced coma. Her husband, Denny, stands by her side and continues to pray for her recovery. |
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| Now, on a good day |
Brad and Nancy will be sure that Baby Ethan gets good eye exams.
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| Can he be more perfect? I think not. |
Following, from Wikipedia, is more detail for those interested in learning about Cavernous hemangiomas.
They can arise virtually anywhere in the body and are considered to be benign neoplasms.
| Central nervous system cavernous hemangioma | |
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| Classification and external resources | |
 Histology of a cavernous hemangioma |
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The incidence in the general population is roughly 0.5%, and clinical symptoms typically appear between 20 to 30 years of age.[2] Once thought to be strictly congenital, these vascular lesions have been found to occur de novo. It may appear either sporadically or exhibit autosomal dominant inheritance.
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