Wednesday, May 27, 2009

Getting closer to surgery

I have been focusing on pregnancy and baby Elena for over a year now. She is great. 8.5 months old. I can't believe it, really. She is a wonderfully curious and loving child. She is a very good and happy baby. I am proud to be her mama!

I met with the endocrinologist who diagnosed my Cushing's in December 2007 today. She sees that my symptoms and labs have gotten worse, and she is willing to follow me post op-- in tandem with my local endo at home-- and is ready to do it if the neurosurgeon is ready.

I expect to get cleared for pituitary surgery by noon tomorrow.
I have a 3T MRI tomorrow at 9 am, appt with neurosurgeon at 11 am to discuss MRI and set surgery date. This is the same one who ordered the IPSS (diagnostic!), cleared me for surgery in December 2007, and understood that I needed to try for a baby. Here I am back and ready to get back to surgery. He said it would be no problem, no additional testing required--only a new MRI. I expect that the surgery date will be in the next two weeks. Once you are a confirmed surgical case, he gets you in right away.

How big will my 5-mm-on-right and 3-mm-on-left barbell wrap around tumor (that's 8 mm, right??) be after an active period of pregnancy (9 months) and breastfeeding (7 months)? We will know that answer in the morning.

So, to my big question for the night:

Has anyone ever heard of Cushing's patients taking dexamethasone -- instead of hydrocortisone/Cortef -- as the cortisol replacement after pituitary surgery?
A fellow Cyclical Cushie who just had surgery at Mass Gen and my endo-neurosurgeon team both use dexamethasone for the first six weeks and then augment Cortef after that point. This is so different from the way we have seen everyone on the boards do it, so I am looking for feedback and explanation and knowledge. Help, too. These docs also don't allow the patient to crash in the hospital, and I believe, dex is given in the hospital after surgery, not after specific cortisol results.

The benefits, as explained to me, is that Dexamethasone stays in the system longer so the body isn't as sensitive to "drops" or "crashes", but they are still possible. Also, docs are able to measure the "real" cortisol levels of a post op Cushie because Dexamethasone does not interfere with testing (UFCs, blood serum, saliva, I assume but not sure). One of the possible downsides is that it may be more difficult to wean off dex than cortef.

Does anyone have any medical lit they can share? Can anyone shed more light on this? I am so confused!

Good night everyone!


P.S. I really want to say thank you to all of you who have taken the time to read this blog, and especially to those who have written encouraging notes to me. I feel your warmth and caring through this impersonal medium. I really do. And I am grateful to see each little comment as it arrives in my inbox. Such a lovely surprise. I thank all of you.

P.S.S. Thank you especially to those who have shared pregnancy success stories post op with me. You give me hope and I feel so much better that I "know" people have had gone on to grow their families after pituitary surgery for Cushing's. If you want to write up your experiences, I will post it here as a guest blogger entry, and that way people can benefit from all of our experiences. If you post the comment, I will not approve it. Instead, I will copy and paste it, in case you want to give me your phone number or email so we can stay in touch.