Miss Diagnosis: The Condensed Version

Monday, April 2, 2012

The Condensed Version

It's a long story...a decade in the making but I'm going to try for a synopsis here for any new readers.

My daughter, Alex, complained of a daily headache starting at the age of 7. By the time she was 10 she was having GI issue daily as well. No doctor could explain why, despite chronic diarrhea, Alex was gaining up to 10 pounds a month. By the age of 12 she was no longer healthy enough to attend "regular" school. At that point she had gained nearly 100 pounds, was tormented by a 24/7 migraine, suffered from frequent abdominal pain, had stretchmarks covering her body, and also suffered from anxiety, acne and horrible insomnia.

During this time I drug her from one specialist to the next, all to no avail. At one point I "Googled" "unexplained weight gain" and burst into tears when I read about Cushing's Disease. I knew, beyond a shadow of a doubt, this was what she had. If only I could convince the doctors.We traversed the country trying to find a doctor willing to "think outside the box" and eventually found a Cyclic Cushing's specialist in LA, only 500 miles from home.

Finally, Alex was diagnosed with Cyclic Cushing's Disease and scheduled for brain surgery. The surgery was less than successful; they were unable to completely remove her tumor. Another year of waiting and testing ensued before she again went to surgery; this time to remove her adrenal glands; a last ditch effort at a cure. Both glands were removed and life did get better. Over the first 2 years post surgery Alex lost 70 pounds and the majority of her other symptoms vanished. Without adrenal glands life is complicated by life sustaining medications with tricky dosing schedules but it's better than life with Cushing's.

The saga continues....in the latest edition of "Life With Alex"? It's back.

(continued tomorrow)

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Transphenoidal Pituitary Surgery- From the UCSF web site

What happens during surgery?
The surgical removal of the pituitary adenoma is performed by a technique called a transsphenoidal operation. The word 'transsphenoidal' describes the path the surgeon follows to reach the pituitary gland. The word comes from 'trans', meaning 'to cross or pass through', and 'sphenoid', the name of the cavity (the sphenoid sinus) that is passed through to reach the pituitary gland. Newer techniques and improvements in technology now allow removal of these tumors without the need for an incision under the lip or within the nostril. The surgeon begins the approach by entering through the nostril on one side. The surgeon uses a brilliant fiber optic light to illuminate the internal anatomy, a microscope to magnify the area of surgery to 12 times the actual size, and very tiny microsurgical instruments especially designed for this particular operation. The surgeon guides the surgical instrument into the nasal cavity and an opening is made in the sphenoid bone. The sphenoid sinus is entered, and then an opening is made in the wall of the sella turcica to expose the pituitary gland. The adenoma can be readily distinguished from the normal pituitary gland tissue and is removed without removing the normal gland. After the surgeon removes all the tumor tissue, the small cavity that is left is treated with alcohol to destroy any tumor cells that may remain. This cavity is then sealed, sometimes with a piece of fat that the surgeon removes from the patient's abdomen. The surgeon then applies a biological 'glue' that helps seal the pituitary area from the nose and promotes natural healing. No nasal packs are used with this approach.