franjo

Hi Andrea!!

I was beginning to wonder if I was the only one in the world with a congenital disability! It's nice to feel special, but I don't think I'm THAT special!

Thanks for replying to my post. I'm sorry that you've had to have so many surgeries. I hope they were successful ones. I'm scheduled to have a tethered spinal cord release on June 5 (my second). All in all, I've had about 16 surgeries. Not all of them were related to my disability though.

If you are like me, a lot of your childhood was spent counting the little dots on the ceiling tiles, post-op. I can still see those d*%# tiles in my mind!!! I missed most of my 4th grade, but was able to keep up with home tutoring. Shriner's has school in hospital, which made all the difference.

There was a lot of teasing to overcome too. I don't know how old you are, but in the 60's children weren't as politcally correct as, I hope, they are now. Most of my energies were spent trying to be as normal as possible. I would sneak regular shoes to school, put the old clunky orthos and my Milwaukee brace in my locker, then continue through the day until time to go home. Then I would don all the paraphenilia once more and return home....no one the wiser. I was such a rebel!!

Also, back then, at least in my experience, doctors did not seem to think that the young patients needed to be apprised of what was in store for them. I often had to glean information from what I'd overhear, and even then, most of that I didn't really understand. For instance, at age 10 I had my first myleogram. They gave me a sedative injection, whisked me from Shriner's to Barnes hospital in St. Louis for the procedure. No one told me what was happening, and I thought my parents were not aware of what they were going to do to me. I thought I was going to have surgery and my parents didn't even know. So, I fought that shot with everything I had...I was determined to stay awake....I really felt as if I was being kidnapped. I get angry when I think of some of these experiences. No one even bothered to tell me what was going to happen to me! I hope it's different for children today, because when you're a child, and left to your own frightened imagination, the images conjured up are often more frightful than what is actually about to take place. But those images are very real to a scared child. What were they thinking?!??!! GEEEEZ!

I hope this finds you well today. And I do hope you'll post here again. Take Care....

~Teri

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Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 and 57 degrees); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; various developmental abnormalities of the spine.

Surgeries include, but not limited to:
Lumbar fusion-1968
Fusion with Herrington Rod instrumentation-1970
Femoral osteotomy-1971
Tethered cord release-1987
Rod removal-1987
Chiari-type pelvic osteotomy-1988
Trochanteric osteotomy-1989

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Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 thorasic and 57 degrees lumbar); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; cysts on cord; various developmental abnormalities of the spine: narrowing of all disk spaces, defects in posterior arches, ectasia of the spinal canal and dura, segmental disease, sclerosis in L. iliac bone and adjacent sacroiliac joint, unilateral osteitis condensans ilium, hypertrophic facet disease L4-5 and L5-S1.

Surgeries include, but not limited to:
Lumbar fusion-1968
Fusion with Herrington Rod instrumentation-1970
Femoral osteotomy-1971
Tethered cord release-1987
Rod removal-1987
Chiari-type pelvic osteotomy-1988
Trochanteric osteotomy-1989
Tethered cord release-2003
Fusion with instrumentation with lots and lots of screws-2003