Miss Diagnosis: The Never Ending Low

Monday, May 18, 2009

The Never Ending Low

The last couple weeks have been so weird. Alex has been in such an extreme low it's unbelievable. She has lost 10 pounds, she has no appetite, the acne is gone, and other symptoms are going as well, but she feels AWFUL. This is what I expect after the BLA, not before. She has been taking whopping doses of hydro ( 5mg at a time, but up to 30 or 35mg in a day) just to keep from vomiting and shaking. Along with feeling physically awful she seems to be in a really major depression. I just don't know what to think. I'm theorizing that her pituitary has completely quit making ACTH on it's own, it's gone to sleep as the tumor has taken over it's job. The problem with that is that when the tumor cycles off her pituitary isn't "waking back up" to fill in the gap anymore. After the BLA she is supposed to live on 25mg. of hydro a day, so I really don't get why she needs more than that now. Hopefully things cycle again soon and change. this isn't a fun place to be.

1 comment:

KWMay 27, 2009 at 9:29 AM
Rene - I'm sorry to hear that Alex is having a difficult time. Just when you think you start to understand Cushing's, it does something to throw you for a loop again.
Your children are lucky to have a mom who is dedicated to their well-being.
Each day is a new day and some are better than others. Keep going & stay strong because those good days will be here 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.