Miss Diagnosis: This Is It~ The Time Has Come!

Wednesday, July 15, 2009

This Is It~ The Time Has Come!

We leave for S.F. later today, when Brian gets home from work. It's lucky we booked a room for tonight; the surgeons office called to tell us she has been bumped up to 7:30am with a 6:00 arrival time tomorrow morning at the hospital. The good news there is that she doesn't have to go without food and water till noon, and with the earlier appointment they only ask you to arrive 1.5 hours prior to surgery instead of 3.

Since the Sunday trip to the hospital Alex hasn't been able to eat anything. The abdominal pain is better and there has been no more bleeding, but she still has diarrhea and is very nauseous. She's taking Zofran for the nausea but it doesn't seem to be doing much good. We saw the G.I. doctor yesterday. She thinks the high dose steroids in hospital will be a nice treatment for the Crohn's. She says move forward, get the surgery done, get on a maintenance dose of steroids and then we will do the scopes again. I suppose the Crohn's was aggravated by stress. Between the upcoming surgery and having the dog die on Saturday it was just too much.

So... this is it!

2 comments:

Kristen TwedtJuly 15, 2009 at 9:32 PM
Hi, Rene,

I found your blog tonight and couldn't believe that it just so happens to be the night before your daughter's long-awaited surgery.

After reading your posts, I felt like I had found a kindred spirit. My daughter is 15 and has been on an amazingly similar journey. I know all too well that heart-wrenching feeling with doctors look at you like you have a third eye. Cushing's. Even if my daughter does not have it, I know that despondency of spending countless hours and the expense of seeing multiple specialists and never getting a diagnosis that fits.

Please let your readers know as soon as you can how Alex is doing. Know that I will say a specific prayer for you and your family that this will be the beginning of much healing and happier times for you all. It is well past time.

Thank you so much for taking the time to share your story. I hope tomorrow brings you much hope and relief.

Best,
Kristen
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Hi, I'm ReneJuly 20, 2009 at 8:58 AM
Thanks Kristen, it's nice to meet you! Are you a memeber of cushing-help.com message boards? They have been a God send for me.
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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.