I'm a big weaner

I've managed to wean from 60mg of hydrocortisone to 5mg in less than 7 days! Yay! Yippee. Actually I think I could have skipped the 5mg today, but I took it just for the hell of it. One tiny ping in my adrenals and I dropped 5mg, you know, just in case.

Ok, honestly? That isn't good news in the Cushing's world. My body shouldn't be able to compensate for that rapid of a drop in steroids in such a short time. I suppose it means that the source of my Cushing's is finding a way to come back to life. *fingers in ears* LA LA LA LA LA

I saw my primary doctor's assistant today to see if they could order a radiological test to find the source of my leaky brain. They were pretty stumped. I don't want to bug them, but they haven't called me yet. They said they would. I'm afraid he'll drop me as a patient if I keep 'coming down' with questions and problems that they can't deal with. I really like him and his staff; I try to send them goodies for the office whenever they help me through situations like the one I am dealing with. He must really like people with strep or UTIs after my visits. ;)

I made an appointment with an ENT surgeon for Monday, just to cover my bases. Once again, I hope I don't scare the bejeezus out of him and have him send me packing. It was already suggested that I go back to Houston for the leak repair. No. Freaking. Way. is my non-verbalized response.

I know a neurosurgeon in Los Angeles, but I don't think a neurosurgeon is needed for this - more an ENT problem. I think. I don't know. Which brings me to my most recent thought: wouldn't it be nice to just have NORMAL PROBLEMS? How about that osteoarthritis I have in all of my left-side joints. Couldn't that be my only cross to bear? Wouldn't that be nice?!? I try not to talk about my medical issues out loud to normal people any more. I scare them. *ducking*

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.

5 days post-op

I'm healing up very nicely from surgery.

My nose is getting better. A shower or a little time over a steamy pot is enough to loosen things up and make me comfortable. I think that if my biggest annoyance with brain surgery is a little swelling and stitches in my nose, well then things went very well indeed! I need to send the surgeon, Dr. Jho, more than just a thank you card. I'll have to find a way to ask Sid at SurgeonsBlog what would please a surgeon the most from a patient filled with gratitude. Dr. Jho specialises in minimally invasive techniques for Brain and Spine surgery. He can do surgeries that do not exist to fix problems that are taken for granted as permanent elsewhere. His innovations, dedication and attitude impressed me to the core and I have searched the continent for 'The' Surgeon. His post-op morbidity statistics were the best I have seen.

I pay strict attention to the Diabetes Insipidus statistics, both transient and permanent, for a few reasons. Foremost, because I know a wonderful woman who has a bad case of DI and lives attached to her nasal medication. The ongoing horrors she endures to ensure she has adequate medication, medical coverage w/o pre-existing condition clauses, she ends up w/ Rx's that do not last as long as they should (due to medication distribution inside of the dispenser), her insurance regularly rejects paying for the $1000+ a month med. That alone is enough to feel constantly at war. I think of her often and what she endured, not just now, but to get to her diagnosis.

People with instances like hers opened my eyes to the life that begins after the cure, and I decided to do my very best job guiding my post-cure life before I got there. My key was the very best minimally invasive surgeon I could find on the planet. I found him, with much help from selfless and thorough Cushing's advice source MaryO'Connor's Cushings-help.com. Mary is my true hero in the lifelong Cushing's story of my time. Without her dedication to Cushing's and helping other people find help, I would be somewhere today lost & still fluttering in the wind, undiagnosed or probably dead.

Mary runs her site out of pocket, so please stop over and donate to her cause, I use Paypal. :) She is truly and directly saving lives with her work, and at the very least should not have to be worried about money to keep the place going. She also has health issues of her own that I would prefer to see magically disappear and fix, for Mary deserves a long healthy happy life with Tom. :)

The Start Of My After-Cure Life:

Dr. Jho took the entire tumor without disrupting the pituitary gland. He advised to leave the Rathke's Cleft cyst inside of the pituitary alone, for the same reason: "preservation"

Today is post-op Day 5, so we arrived to do my blood work this morning @ our local hospital. The lab technician was very well-schooled on ACTH draws and it turns out that their lab computer system is well-programmed. Normally I have to have fight to get the tech to ice the drawn immediately and spin it down right away. Their tag system had it on the vial slip. That was refreshing! And here I am in rural NY, they did it right. Go to Los Angeles and see who you have to throw down the hall to get a glove baggy of ice and a centrifuge. LOL

I'm trying to sleep more, so I am off to bed. I wanted to show the progress with the facial swelling. My dimple areas are back (true dimples, not those fat folds LOL) and I can feel my cheekbones coming to the surface. My legs are still swollen and such, but I'm being patient. Just trying to take it easy and get better. I still have a slight headache and my vision hasn't recovered much more, but I think it'll just take time. Swelling and whatnot. ~ Lisa

11 days pre-op. Normal, mid-swollen.

5 days post op:

Eyes are open, cheekbone pads aren't thick. Natural dimples coming back to thinned out face.

Dark picture, but just shows more of the same. Those years I aged are falling off (thankfully!) so maybe I won't look so matronly anymore. ;)