So, where do I start. I could start all the way back "in the beginning", but not yet. I'll get there some day. Ever watch the movie "Benjamin Button". Not the same condition as mine, he just got back to the beginning in the end and I guarantee you that I will get there with this blog at the appropriate time.
My blog title "facial differences", so I've learned today, is the politically correct and much simpler term now associated with "Atresia-Mircotia Hemifacial Microsomia". That's me. When I was born, I had no right ear and my right jaw bone was underdeveloped. Apparently, this congenital (meaning it happened in the womb, not genetic, not inheritable), birth defect occurs in anywhere from 1 in 6,000 to 1 in 10,000 depending upon which websites you visit. One website actually indicated that the chances of my offspring inheriting this condition to be 1 in 33. Yikes! My doctors always told me that it doesn't happen since my condition is congenital, not genetic, however, 1 in 33 has more of a chance of a facial difference than 1 in 6,000. Thank God, both of my children came out perfectly normal.
I was born in 1965 (see? we're already back at the beginning) at a time just prior to the pioneering days of "plastic surgery". I make that statement with the understanding that many reconstructive surgical techniques were "invented" and practiced in the fields of the Vietnam war. My first "corrections" occured at the Balboa Naval Hospital in San Diego. Those corrections involved skin grafting and a plastic insert to build an ear and bone grafting from a partial rib to lengthen and reshape my right jaw bone. I was about 5 years old when those surgeries occured. This was my first exposure to a hospital- military hospital- a ward full of children with a variey of infirmities. That was also back in the days when they knocked us out with a form of engine starting fluid, you know, ether. I remember being terrified and I seem to remember that my folks didn't get to stay there after visiting hours, maybe they did and I just don't remember it correctly- sometimes remembering back to my 5 year old days when I'm now 44 is a bit scewed. I remember being a very sensitive child growing up. Crying a lot about a lot of things. Of course that may have just been my born-in personality. I did manage to grow up with the average bunch of kids- did the average kinds of things kids did. One thing that was NEVER in question was my parent's love and acceptance of me regardless of my condition. I do know that it was a burden to them both financially and emotionally. They never expressed that to me, but I could tell.
And since this is a blog and it is getting late and I have to tuck my kids in for the night, I'll end this session. Please feel free to visit from time to time. I will try to dialog with myself and hopefully I can offer some sanity, encouragement and hope to parents of kids like I was or those of you out there that share my condition.
Until then-
Have a great day!
James
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James,
ReplyDeleteI can tell you first hand that the power you have to help others by sharing is unreal and rewarding. Keep writing and just know that you will lift others up.
Jim
Almost the same story for me, except I was born in '52 so went without benefit of any major surgery till I was in my Junior year of highschool in Santa Ana, CA. During three surgeries they took a bit of cartilage from my ribs, a 6x6 inch strip of skin off my right hip (worst pain I've ever gone through) and from that made a crude looking outer ear.
ReplyDeleteJump ahead to two weeks ago at my ENT's office after going over a recent CT scan of my sinuses. Since I was a child I'd had conflicting reports from doctors that "No, you don't have an inner year" to "Well, I doubt that, there must be something in there". By chance I got up the nerve to ask the doctor if he saw any signs of an inner ear. He put up one of the CT films on his lightbox, took a close look and said "The resolution on these isn't that good but I do see some structures in there. I'll refer you to the House Ear Clinic and lets see what they say."
Skip a little ahead to last week when the doctor simply took a tuning fork, struck it on the edge of the counter and held it to the right side of my head near my missing ear. He asked me where the sound came from. I pointed to my right. He struck the tuning fork again and held it to the top of my head, slightly to the right side and asked again where the sound was coming from. I pointed to my right again.
He set the tuning fork down and said simply "You've got an inner ear.". Funny, none of the other countless doctors I've seen over the decades I've been around could find out so easily.
One last skip, just a few minutes this time to where the doctor is telling me that surgery to open the ear canal and build an ear was possible but dangerous as many of the facial muscles come together in that area and there would be a chance of partial facial paralysis.
He went on to tell me about a device called a BAHA or Bone Attaches Hearing Aid. They 'simply' insert a tiny 4mm screw into my skull, wait 3 months or so for the bone to graft to the screw, then attach an abutment (fancy word for a the bottom part of a snap) and then I could attach the BAHA to that.
The day after tomorrow I go in for a test run of the hearing aid to see if I like it. Hopefully, I'll also find out if my insurance will cover the cost of the device.
I'll see then if I want to wear one of these BAHA's and look like I'm turing into a Borg, go for the surgery (if insurance covers it) or just keep truckin on like I have been for 57 years.
What a joy to hear from someone "nearer" to my age. I haven't seen many of us older folks around. I was tested with the tuning forks clear back in the 70's and was told back then that I had an inner ear. I have some surgical options, however, after investigating the BAHA and skin grafting and such just the same as you did. I opted out of all the options. Lots of reasons. Tired of surgeries, that should be the next blog (and yes, the hip one was the most painful for me as well), I didn't like the idea of becoming a borg either. I didn't like the risks involved with the skin grafting ear canal design either and didn't want to lose my facial nerves on the right side of my face since I had gone through about a year of that after one of my surgeries, it's not fun. eye doesn't close with the other one and smile is only half there. Anyway, I am so glad to have caught the attention of someone who has gone through a great deal of life as myself. What do you do for a living?
ReplyDeleteJames
I was born in 1960, and had the plastic insert, and that awful gas. So glad those days are past. Like you my deficit is small, relative to others. I have Brandemark dental implants and a prostesis, that works pretty well. Biggest trouble is hearing folks sitting to my right, and determining the direction of distant sounds. Like you I have a wonderful two-eared kid, first thing I looked for when she was born.
ReplyDeleteJim Secrist, Columbus, Oh.
Hi Jim! Glad to hear your story. I am so glad to share that wonderful story with you that our daughters came out better than us! She's a real beauty! My son came out real handsome as well. Thanks for visiting my site, Jim, be well blessed.
ReplyDelete~j