Miss Diagnosis: Life Changing Email

Sunday, April 8, 2012

Life Changing Email

There are days when my in-box leaves me speechless. Mixed in among the email offers for male enhancement and Groupons I find life changing messages.

After sending an email to the National Institute of Health in Maryland in 2007 I received this response:

"...Dr Stratakis agreed that we would accept her for evaluation..."

After sending a disk of Alex's pituitary MRI (that had been read as "clear" by a radiologist) I received this response From Dr. Ian McCutcheon, at MD Anderson Cancer Center in Texas, on New Year's Eve 2007:

"...there is indeed a lesion occupying much of the right half of the pituitary gland..."

And from Dr Friedman, on Easter Sunday 2008 I received this:

"I THINK THAT IS ENOUGH FOR THE DIAGNOSIS OF CUSHING'S. PLEASE FAX ME BACK THE CONSENT. HAVE YOU DECIDED ON A SURGEON?"

Where would we be without computers and email? I don't think it's an exaggeration to say I don't think Alex would be alive today.

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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.