Miss Diagnosis: Phase 2- diagnosis

Sunday, March 8, 2009

Phase 2- diagnosis

This starts from where my "In the Beginning" post leaves off.

After returning from NIH with no answers I was initially frustrated beyond words. With a little time and encouragement from my friends at cushings-help.com I mailed the disk with Alex's pituitary MRI that was done at NIH to Dr. McCutcheon at MD Anderson Cancer Center in Houston. I also scheduled a January appointment in Los Angeles with endocrinologist Dr. Theodore Friedman.

On New Years Eve, December 31, 2007 I received an email from Dr. McCutcheon. Here is part of his response, "By my reading there is indeed a lesion in the pituitary, largely occupying the right half of the gland..." He went on to explain, in detail, what he saw and the implications. With this piece of the puzzle we were finally getting somewhere! With this Alex's pediatrician was able to refer us to neurosurgeons at both Stanford University and the University of California, San Francisco (UCSF) both in January. Although the radiologist at NIH was unable to see irregularities in the pituitary all 3 neurosurgeon were able to see a problem.

January also took us to Los Angeles for our initial appointment with Dr. Friedman. He told us from the beginning that he was fairly certain Alex had Cushing's disease. He ordered more testing and on Easter of 2008 we received an email from him with an official diagnosis and recommendation for pituitary surgery. Surgery was then scheduled at UCSF with Dr. Sandeep Kunwar.

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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.