Miss Diagnosis: Anger and Bitterness

Tuesday, April 14, 2009

Anger and Bitterness

Negativity is seeping from my pores. Most of the time I handle it, but some days...it gets the best of me. Right now I hate most "medical professionals", those who don't care, those with the big egos, those without enough time. This round of bitterness stems from an e-mail last night from the surgeon at Stanford. He hasn't heard back from Dr. Friedman and feels that we should, after all, see the endocrinologist he works with. Why don't we just come back down to Stanford and see what he has to say? Ummm...maybe because I don't care what he has to say? Maybe because Alex doesn't need to suffer through another 7 hour day of driving? Maybe because he will say he has a different opinion and doesn't think that a BLA is the best decision? I am well aware that Alex's case is "complex". Why do these guys get to spend a half hour with a patient and determine what is "best". Okay, so they went to medical school while I was at beauty college, but I am the one who has exhaustively researched what is right for my child. I guess this means we got to S.F. for the Friday appointment with Dr. Duh. I suppose he will say the same thing?

1 comment:

KWApril 16, 2009 at 3:32 PM
Rene,

My heart goes out to you & your family. Doctors can be so frustrating. At times, I wish there was more bedside manner - meaning that they took the time to have empathy for their patients rather than treating them like a medical chart.

Thanks for joining the Cushing's Partner Program. I hope that it'll bring you some solace in knowing that you're not alone :)
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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.