Miss Diagnosis: I Met Another BLA'er

Tuesday, October 6, 2009

I Met Another BLA'er

On Saturday I met with Sybil (Sylvia) from the cushings-help message boards. Aside from talking to a few possible Cushies in Dr. F.'s waiting room this was my first ever face to face with another Cushing's patient. Sybil had pituitary surgery (failed) with Dr. McC about 6 months before Alex's pituitary surgery and she had her BLA With Dr. Chiang about 6 months before Alex had hers. Sybil was also diagnosed by Dr. F. after fighting many years with the local endos. We spent 2 hours chatting and had a great time. She is really fun and had lots of insight into the changes a body goes through with recovery.

Alex is finally down to 20mg of hydro a day and has lost a few more pounds. Since surgery she is down a total of 7. We have a really long way to go 100+ pounds is the goal. At least the number is going down consistently instead of up.

1 comment:

AnonymousDecember 7, 2009 at 9:14 AM
Rene, Please let us know what's happening and how Alex is doing now. I follow your blog and it helps me understand the whole process as a mother of a teenager who has just been diagnosed with Cushings.
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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.