Miss Diagnosis: She's Melting!

Saturday, July 25, 2009

She's Melting!

It is so bizarre! I really don't understand how this happens but Alex's appearance is changing. She looks like she has lost a lot of weight but she hasn't actually lost any at all. Her face shape is different and her belly looks so much smaller. Brian thought it might be the change from fat to more muscle but that doesn't make sense at this point. She is still doing absolutely nothing; well, okay she did leave the house yesterday for the first time, but she sure isn't doing anything to build muscle yet!

Years ago when I first believed that Cushing's was the issue there were times we would see her face shape change. Every once in a while we would be sitting at the table eating dinner and Brian and I would look at her and look at each other and both see it at the same time. That silent communication thing (30 years together) where we said nothing but silently acknowledged that she had changed yet again before out eyes.

I am excited! It feels like we are started down a road to recovery!

4 comments:

JennyrJuly 25, 2009 at 4:43 PM
That's so great Rene! Alex must be pretty happy about that. It's news like that which spurs me on! Hugs to both of you.
Jenny.
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judycolbyJuly 25, 2009 at 5:39 PM
I know just what you mean. It's great isn't it? After awhile you almost forget what they looked like preBLA. Yet the scales don't quite reflect how they look.
Very strange disease.
I'm glad things are going in the right direction.
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GracieJuly 26, 2009 at 5:16 PM
It is a strange disease. I'm having the same thing happen. Still no real weight loss, but I'm looking smaller and even wearing some smaller clothes now. I stick to the muscle gain idea. LOL! Glad you are seeing changes already! It IS exciting!

Hugs,
Gracie
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Kristen TwedtJuly 27, 2009 at 9:35 PM
So glad she is getting better after surgery. You all have been through so much. Sounds like you are definitely on the road to recovery. I hope she is feeling less pain and getting stronger every day.
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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.