Friday, February 29, 2008

Back from MD Anderson

Surgery went well. 

I'm home now, resting in bed. Physically I feel much better than before surgery. I can walk and go upstairs with ease. I feel very well except the head hurting. 

With Cushing's Disease it is not necessarily good news to feel so wonderful post-op, but I am taking it as confirmation that I can't take my six week reprieve from Cushing's lightly. The last time I had surgery I had a wonderful 6 weeks of feeling great, so I am presuming the same this time.

Shame on me for coming here with great news and turning it towards the bad, but I am going to get off of hydrocortisone as quickly as I can and get to testing my adrenals. I still suspect Primary Pigmented Adrenal glands or abnormal hormone receptors in the adrenals .

I still needed this surgery very badly, as the surgeon (who ROCKS, btw) found a pre-existing CSF leak in the sella area. IMCC couldn't find the exact "hole" so he used a liberal amount of "brain spackle" to seal it up. There was a whiteish lesion on the left side of the pituitary and he removed a lobe because it looked funny. The leak makes sense, or lack thereof now, because my ears no longer ring 24/7 and my left ear has stopping hurting. Pathology returned as normal, like last time. He doesn't know what the lesion was, but I am glad to be rid of it.

My 3 day post op numbers were excellent: 4.5 cortisol and ACTH at the bottom of range

After they removed the nasal packing I had some sort of leak, but with the brain spackle they say it is isn't possible for it to have been from inside the pituitary area. Laying flat helped, taking Aleve helped get my pain down & wits back.

Quite a few of us Cushing's patients have had problems with the nursing staff on the Brain & Spine floor.  I want to band together and write a letter reaching out to the Pain Specialist department and see if they will work in conjunction with IMCC's office to take pain management out of the nursing staff's hands for the first two days after surgery. We have to do this so that future Cushie's don't suffer what we have been through.

If I were given the option of living through those first two days again, or death - I'd ask for stationary. Because I need to write some letters before I go. It was that bad.

For Cushing's there is a hormonal interaction aspect with pain management and I believe we may have to step up for Cushing's at MDA, since their expertise is cancer. I want any one that goes to IMCC, such an excellent surgeon, to not have to encounter difficulties in the post-op period.

Anyone that makes me cry for 8 hours, laying flat with my mouth open and tears streaming out of the corners of my eyes, and makes my father cry with me usually gets special attention in the letter department. This time, however, an intervention & new alliance between the Pain Specialist & future Cushie patients may have the best impact.




The pain issue goes beyond your average nurse and hospital stay problems, I feel. I think that having Cushing's our incredibly jacked up hormonal system creates problems that cannot be anticipated. I have researched the underlying reasons for this previous, finding that the precursor hormone to ACTH also makes peptides that are involved in beta-endorphins.

Link: http://www.vivo.colostate.edu/hbooks/pathphys/endocrine/hypopit/acth.html

Right after surgery I would have to expect that our pituitary is "shocked" at the insult of being toyed with and that ACTH is low or none; of course being low due too a lack of the precursor hormone:

"The major attributes of the hormones other than ACTH that are produced in this process are summarized as follows:

Lipotropin: Originally described as having weak lipolytic effects, its major importance is as the precursor to beta-endorphin.

Beta-endorphin and Met-enkephalin: Opioid peptides with pain-alleviation and euphoric effects.


Melanocyte-stimulating hormone (MSH): Known to control melanin pigmentation in the skin of most vertebrates."

To me, it makes sense like nuts and bolts, if you keep throwing nuts at a problem it won't fix if you do not have any bolts to hold them. Am I making sense? I'm trying to say that people enduring pituitary surgery need specialized management for their pain. This should be recognized and dealt with by removing nurses from the decision role in immediate post-op pain management. 

And the nurses. Arg. They wouldn't even let me talk to a pain specialist OR the neurosurgeon on call, I begged them. I had to call the hospital and have him paged to call ME directly. Then everything changed. It was a complete blockage by the nurses. And they just kept closing my door so no one could see me in there crying. Nice. Real nice.

When the doctor got ahold of them, after our conversation - if you call weeping silently and barely managing to speak a conversation - the nurses were reamed for a few hours. Yowza! They came to me and yelled at me for calling the doctor. "You do not call the doctor directly!" and "How did you get his number?". *"Uh, because I am smarter than you are - bitch. Ding. Ding. Ding." After interrogation, I ended up crying out like Richard Gere in "An Officer And a Gentleman", with spittle and tears and raw emotion: "That's not my problem! That's not my problem!"

I know they felt that I was extra whiny. Extra dramatic. But in reality Cushing's Disease calls out for special monitoring and treatment by qualified medical doctors that can treat us.

I got the diladid pump after I managed to see the Pain Specialist, but it made me retain my urine. They refused to put a catheter back in, but also yelled at me for being up (to attempt to go pee) because I was pouring fluid out of my nose (and I did the halo test on a paper towel - very positive). I would have to get up every hour, go and sit & sit & sit forever on the potty and could NOT go. I also had an IV drip going, which added to the urine that was accumulating. Thank heavens for a friend that called the charge nurse for me. My regular nurse refused to check my bladder with a scan, she insisted that I wait another 6 or 8 hours!!! The charge nurse made her do it, and when it showed urine, the nurse did a straight catheter. A whole liter came out. !!! Even then I wasn't empty, I could tell.


My surgeon's assistant took me off of the diluadid pump and put me on Norco. By that time the pain wasn't as SEVERE as it had been, that spike going through my left eye like it had been before, so I was ok with it. They showed up every 6 hours to give me the Norco no problem. When I found out that I was getting out the next day, and after my mandatory lay flat day, I got up and took Aleve without telling the nurses. I was too scared of them to take it without telling them previously, but by then I didn't care. Aleve took away 100% of my pain, go figure.

Anyhow, back to bed for me. My head hurts, but in a good "healing" sort of way. :)

1 comment:

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