Intractible crying and timing of surgery in females with classic CAH
8/25/99 7:49 PM
We have a 4 month old daughter with classic CAH. She has crying spells which are prolonged (hours) and suggest abdominal pain to us. Any thoughts? She will receive corrective surgery with clitoroplasty performed next month. The entrance of the vagina to the urethra is about mid level. The urologist involved suggests that vulvoplasty (exteriorization of the urogenital sinus)and flap vaginoplasty (connection of vagina to exterior) may need to be delayed, possibly until pre-sexual activity. He says that scarring and fibrosis results from aggressive vaginal reconstruction at a young age, unless the anatomy is favorable (related to entrance above or below the bladder external sphincter and possibly other considerations). If anybody out there has experienced this surgery, has experience or knowledge of this surgery, please answer these questions: 1. How bad is the vaginal scar tissue problem and how bad is the late "reconstruction" surgery? 2. What is the real scoop about dialators? 3. What happens with periods (and use of tampons) if surgery is delayed past the start of menses? 4. What are the psychosocial implications of delayed surgery? 5. Does anybody have a sense of what the best time is for surgery with "difficult" cases? Our daughter's genitogram (retrograde urogram) suggested a mid entry of vagina to urethra, but the doctor treats it like a posterior entry. 6. Who are the best surgeons and centers nation-wide? 7. Will the timing of surgery affect the crying spells? 8. We are trying to make a decision for our daughter. If you had to do it over again, would you have preferred late initial surgery to dealing with scar tissue/late reconstruction surgery? Is there anybody out there who has had late initial surgery? What can you tell us? Thanks Beth and Edward
Beth & Edward
Rare Disease Search Engine, Homeschool Sites, Online Homeschool, Online Income, Ethical Adsense, Creative writing, Family Web Hosting, Christian Radio, Tulsa Parks