Congenital Adrenal Hyperplasia

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re: New vs. old techniques of surgery
Feb. 11th, 2005   12:27pm
Do a medline search for citations by Baskin and Rink. Baskin has done much in the area of clitoral structure, and Rink specialises in chopping off sensitive clitoral tissue. There are some resources out there (and online) that include photographs of the surgery if you look hard enough.

The issue is you can have what you (meaning the doctor) thinks is the absolute best but until the person who had it done on you gives you feedback indicating that's the case, it's all hyperbole and assumptions.

I have an interesting contrasting story to share about not writing before follow-up. About 5 years ago (when did JFK Jr. die---it was the same day) I had a bicycle accident that tore up my shoulder pretty good. First they tried to fix the shattered collarbone with a plate. My body rejected the plate (not sure if that is CAH related other than the fact that I learned from the osteo doc the problems with steroids and calcium leaching; the endo never said a word). To make a long story short, the doc wanted to try some radical new technique he deamt using pieces of cadaver bone, string and wire (I suspect there is duct tape in there too). He drew me lots of pictures, explained it carefully, and I asked tons of questions. Eventually I said okay because do nothing option would have meant I would have eventually lost use of the arm. 5 years later, this doc is writing and asking how the arm is because he would like to write and present about his technique. I learned he never did previously because he wanted to make it continued to work. What a concept, huh? Waiting until the patient can give qualified feedback before bragging about what you did is a foriegn concept to docs who seek to tell the world using lectures, and slides of your daughters' surgery online.

Also, the best technique in the world doesn't overcome the fact that the surgery is still cosmetic and unnecessary in most cases.

Betsy




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