I've had it. Up to my neck, err - brain.

My brain is still leaking. Dammit.

"My brain is leaking! My brain is leaking!"

Friday will mark four weeks since surgery and I am spitting mad that they didn't believe me when I told them I had a leak at the hospital. Sorry, dear city of Houston, I don't think we have a future together. We don't seem to mesh well. ;)

I've tried laying flat on my back every night when I sleep and it isn't helping. Can I just say I deserve a medal for even sleeping like that for one night, let alone four or five? Yes, I do. I've had to resort to sleeping on the couch so that the width of sleeping area discourages my sleeping self from turning.

I'm trying to arrange for the radiological tests to determine the exact location of the drip, and have an appointment with an ENT/surgeon on Monday. There is no way I am going under without them knowing exactly where to stick in a plug. *sigh*

I started the daily growth hormone shots seven days ago. It is really starting to help. Now I can almost actually lift my feet when I walk. Yeehaw!

I'm making an effort to get off of the steroids so that I can start testing again soon. I managed to drop from 60mg of cortef to 20mg in less than five days. *blowing on knuckles, rubbing on chest* Holy wean, Batman! :)

The Aftermath

It has been two and a half months since surgery and about time for an update.

I've had my post-op blood work and visit with my specialist. It was basically a review on, at 8 weeks post-op, how the (hormonal) chips had fallen so far.

My pituitary is making ACTH hormone in the mid-range and my adrenals are responding. This is terrific news, coupled with the fact that I did not sustain any damage to my posterior pituitary or ability to produce ADH. I have no secondary adrenal insufficiency or diabetes inspidus, the two life-threatening hormone deficiencies. Very cool!

However, my levels of FSH, LH, TSH, IGF-1, Testosterone and DHEA are all very low. For now we are implementing testosterone gel, estrogen gel, DHEA and maintaining my thyroid medication. My T4 values are good, but my body doesn't seem to be converting T4 to T3 like it should be doing.

I'll do more lab work in 6 weeks and we'll see if I need to start growth hormone and T3 medication.

I have to say that losing my 2-1/2 year headache after surgery was more than I could ask for. Life without a headache is still so amazing to me that sometimes I just sit still and enjoy 'being'. I used to try to meditate in an effort to control the pain. Everyday I would practice and never quite get there. I think all of that practice was good for me and I find it easier to drop into relaxed state now.

Being hypopituitary isn't something I'm thankful for, I still wish I hadn't been put off for years and the damage would have been avoided. But it is a heck of a lot better than panhypopituitary, untreated hormone deficiencies, and a 8/10 headache. :)

I'm doing well.

Six days post-op

morning of day 6, talking to my girls:

I think I have discovered the reason why people go downhill at 7 days post-surgery.

Today friend, and fellow pituitary Cushing's survivor, Robin forewarned me that around 10 days after surgery the big ol' scab that is lurking in my sinuses will fall off. Yeowza! She casually mentioned that it gagged her. Oh, I can't wait! Eww.

It's day 6 and I am out of Percocet. Is it any wonder that other people get worse at day 7? I don't want to go on one of my tangents about pain management, but that is just silly. By the time a Cushing's patient has made it to treatment they've endured plenty of pain; joint, muscular, headache, and unrelenting pain that people can't imagine. Excess cortisol breaks down your connecting tissues, and for some related reason the pain of anything knocking into me or even a normal bump into a wall hurts like you could not fathom. Giving someone 7 days of pain medication and telling them it'll take 2-3 weeks for the surgical site to heal is plain mean, imho. I'm a walking pharmacy, so I have fentanyl and morphine to fall back on but I didn't want to go back to those medications after my cure. I despise morphine, but had to break down and take some tonight. I have a huge scab in my sinus cavity, of course my head hurts like hell. A steamy shower only provided temporary relief.

I can't wait to choke on that scab. ;)