Damn you, Cushing's Disease

How to disappoint all of your friends, relatives and two young children: Spend a month recuperating from pituitary surgery in June - and not have your remission stick. In September I realized that the Cushing's had returned, if it ever left, and I'm just now ready to admit to it.

Thankfully the road is paved already and my specialist is recommending a repeat surgery. Tomorrow I go in for a pituitary MRI and with any luck we can find the source. The abdominal MRI from two weeks ago shows normal adrenal glands. In a twisted way I was hoping that my adrenals were the culprit, even though it goes against all likelihood. Removing the adrenal glands would almost certainly put an end to the Cushing's misery. I'd take Addison's back with a warm heart, since my weight has ballooned beyond all recognition. (I avoid mirrors.) They discovered a cyst on my spleen and liver during the abdominal MRI. No one has addressed those findings, so I don't know what to make of it. A quick Google tells me that it is rare, ha - who knew?, and LORD HELP ME, I now know what 'non-parasitic' means. *la la la la la la* (fingers in ears)

I have some more blood testing to do at midnight, which runs a close second to my most despised form of testing torture, and the MRI tomorrow. As far as symptoms go, weight gain - cystic 'steroid' acne - flank pain - and very recently a deterioration of the vision in my left eye (again). The double vision is slight and I only get migraines once a week or so. My bout with constant 24 hour a day headache & migraine has ruined my ability to describe pain. I cannot fathom calling the first surgery a 'failure', since it single-handedly took away the constant headache.

I'm rambling and it is late.... I'll be back with MRI results soon.

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.

10 days post-op

This morning I woke up without a trace of a headache. For someone who has had a headache for 3 years and 2 months, this was a major event! I laid still for two hours, not daring to move a muscle in case it wouldn't last. Two hours of silently rejoicing over something most people take for granted, I suppose.

It didn't seem so pathetic until my headache crept back later this afternoon. *sigh* I guess progress has to start somewhere.

I'm really hoping that this intense and focused headache, somewhat different from my previous resident terror, is from The Scab. It hasn't fallen out yet. However, I am reluctant to wish for something so miraculous. There is the possibility of analgesic rebound, but very slight at this point. I go long periods between morphine dosages without problems at home. I'm waiting until I am stronger and more stable to discontinue the Fentanyl patch. There's no payoff with it, as I do not feel it when I am wearing the patch but I can only presume that stopping cold turkey would be stressful. I'll ask my specialist for his advice on that one.

I wish I was as overjoyed as the last time I posted, but hey - headaches suck! ;)

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. ;)

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. ;)

Tumor Free

It's two days post-op and I'm doing absolutely fantastic!

They took me in for surgery at 2pm on Thursday, kept me in ICU until 10pm (my left eye wasn't working, but who can blame it? It just lost it's tumah pal), spent the night in a private room and they discharged me yesterday at 10am.

We drove up to my Aunt's house to Niagara County in NY from Pittsburgh and I'll be here until tomorrow morning, then on to my Dad's house to stay until things heal up.

The surgeon says that the tumor was bigger than the MRI showed, he clearly and firmly stated that they did get ALL of it and he left the cyst to preserve my pituitary untouched. He felt it was best that way.

I can't disagree, since I feel really well. They had to cut the thin section in the middle of my nose to get more room to maneuver, but that should heal soon. I can't blow my nose for two weeks and I have a lot of drainage going down the back of my throat, but it's getting better. I just moistened up the overnight clogging and cleaned out my nose with saline gel when I woke up. Ewww.

The most surprising and wonderful thing I have to share is my new heart.

Before surgery my heart was a mess. Bumping, thumping, doing backflips and acting up all the time. The very first thing I noticed when I woke up in the recovery room was that I couldn't feel my heart beating. All of a sudden it was just humming along smoothly, like a heart should do I suppose. Up, down I went for a glasss of water this morning on the steep stairs here, and there wasn't even the slightest complaint or bump out of my new heart. It is the most amazing thing I have ever experienced beyond childbirth.

I am happy, happy, happy!!!!!!!

I'm back, with good news

I know I've been gone a while. I won't count off the months and days.

My father-in-law passed away after my last post. Cancer is a terrible thing. It was his second bout with the disease and, sadly, he went undiagnosed until Stage IV the second time around. Chemotherapy gave him some extra time but it didn't seem to be enough. I really miss Bill, and I always will.

On the way home from his funeral ceremony, which was delayed a few weeks for the Christmas holidays, I got the news that my mother was taking a turn for the worse. I flew out and drove straight to her beside getting there just hours before she drifted off into a coma. I never did get to talk to her in any meaningful sense, but that has defined our relationship for 36 years. I think its more difficult to lose a parent you weren't close to sometimes, at least initially. I spent the rest of my trip fighting an adrenal crisis that wouldn't let go.

Meanwhile the surgeon that will be performing my pituitary procedure insisted that I undergo an Inferior Petrosal Sinus Sampling. That's fine, as it assists him when mapping out an approach for surgery. However, arranging for the IPSS was another story. It took from the beginning of January until March 28th to have it scheduled, confirmed and carried out. Then another three weeks for informal results, four weeks for the official ones with a report.

I am happy to say that I do have a date for surgery: May 24th and I do have hope that this Christmas I'll feel better.

I seem to tick off years at Christmas, thinking 'Last year I thought I'd be better by now'. Maybe this is my year.