Miss Diagnosis: Three Weeks and Gratitude

Thursday, August 6, 2009

Three Weeks and Gratitude

I am emotionally overwhelmed this morning. I am thankful to God and to all of our family and friends who have supported us through the years. We wouldn't be here without all my friends and advisers at cushings-help.com. Thank you all. The tears are flowing.

So, the big news? Today is Alex's first day of work. I truly believed that it was likely she would never be well enough to leave the house; that she would live with us forever on permanent disability into adulthood. Many times I felt she would die before she was cured. It is incomprehensible that after only 3 weeks she has shown such vast improvement.

There have been a lot of ups and downs over the past couple weeks, but the steady progress forward is apparent. The GI stuff has all normalized, we hope that means Crohn's is a thing of the past but realize this may just be a remission. The headaches have been bad, but we think that once we get the dosages stable on both the hydro and fludro things will improve. Most mornings she is up at 7:00 or 7:30 feeling fine but there seems to be a mid afternoon crash, with tiredness and headache for the rest of the day. We are still working on it.

Stay tuned for more positive updates!

4 comments:

JessicaAugust 6, 2009 at 8:28 PM
Have you maybe considered either upping her afternoon dose, or adding another small dose somewhere in the day?
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judycolbyAugust 6, 2009 at 8:55 PM
Rene,
I'm glad that things are going so well for Alex. Having a job is great. Also good that the GI issues are resolved, hopefully for good. I don't think Justin has any GI issues anymore either.
Amazing what a cure can do.
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JennyrAugust 6, 2009 at 11:03 PM
This is wonderful news Rene! Tell her congratulations for me. I hope she continues to improve and live her life to the fullest.
:)
Jenny.
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Hi, I'm ReneAugust 7, 2009 at 10:06 AM
Thanks!
Jess,we are are playing around with the times and dosages; hopefully we will get it right soon!
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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.