Miss Diagnosis: Three Years Ago Today

Monday, July 16, 2012

Three Years Ago Today

Three years ago today Alex had her adrenal glands removed. Four weeks ago today she had an ablation done on the suspected area of rest tissue. It feels like today is a day I should do an update...

As of the past two weeks I'm having some serious doubts that the procedure worked. At the two week point I was feeling oh-so-confident. Not so much any more. To begin with her weight dropped a few pounds and she was feeling much better. She had no new acne and was sleeping at night. Sadly, over the past 2 weeks her weight has gone up about 10 pounds. She has actually been feeling pretty well, so that's obviously a positive sign but there have been a few nights when she seemed pretty ampy and a few days where she was having some pretty big mood swings.

She's been on 15 mg of hydro since a couple days after the procedure. That's the same as the lowest dose she has ever been on since the BLA. After the recent weigh-in she dropped 2.5mg off of her afternoon dose to bring her overall dose down to 12.5. I'm definitely worried. Again.

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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.