My cortisol function tested normal which is good news Testing for all other hormones has to wait until my mid April appointment, pituitary still swollen from surgery. Pathology on tissue revealed it was benign and negative for hormones which again confirms it's non-functioning.
So I asked the nice physician's assistant why I was told in the hospital I might be put on medication. She brought up the 2007 report and allowed us to read it. It basically said the tissue then had some cells with a variegated positive which she explained meant it had some prolactin but not the concentrated amounts a prolactinoma would have. So it IS non functioning and there is no medication I can take to suppress growth. I'm glad we got that straightened out.
Then asked about my low normal T4. She explained that although my level is much lower than it had been, I'm functioning well enough that it doesn't justify risking the side effects of medication to raise it at this point. If my health declines and over time the low normal result remains consistent then taking action may be considered. Man it felt good to have questions reasonably and respectfully answered.
We were cautioned surgery could've changed everything or nothing. So I'm taking each day as it comes and hoping for the best. The next round of tests are in April.
3/8/09
My hospital stay
My hospital stay was okay. Nurses over all were pretty cool, Doctors however were hit and miss. Since OHSU is a teaching hospital seemed like there were people popping in and out all the time and because of the fluid leak, my blood had to be drawn every four hours. I'm bruised from hands to elbows.
Sunday morning interns didn't arrive to remove the drain and nasal packing until the afternoon nurse demanded action. It took less then ten minutes to remove both and immediately my headache lessened. However since it was too late by that time to be released. Grrr.
Then one of the endocrine doctors popping in to say that I might have to go on medication. Confused because I'd been told medication wouldn't work for my type of tumor I questioned that. The guy stalked over to the computer where they'd been entering my vital signs and brought my record. There was a old report from 2007 that said last time my tumor tissue tested positive for prolactin.
What?
I started to explain what Dr. Delashaw had told us. The man interrupted, "if you’ll let me speak". Startled by his rudeness I fell silent. He made a few remarks on how medication works on prolactinomas then left. A good thing because though I was still on a lot of pain medication and weak from surgery my sweet, even tempered husband was only seconds from tossing him out.
An hour later my endocrinologist came in, said about the same thing and we just stared at her wondering if somehow we'd misunderstood in January. I decided then to ask about one of my hormones that was low 'normal' and she gave me a lecture on how giving medication when someone was ‘normal’ would lead to other problems. This was a complete 180 from her attitude during my pre surgery appointment when she assured us everyone’s normal was different, her focus wouldn't be on numbers but making me feel well. To my utter embarrassment, I started to cry and luckily she left.
Chris comforted me and after a couple moments I regained composure. We set aside our confusion, deliberately focusing on my recovery. We'll demand clarification on my follow up visit when I'm stronger.
Sunday morning interns didn't arrive to remove the drain and nasal packing until the afternoon nurse demanded action. It took less then ten minutes to remove both and immediately my headache lessened. However since it was too late by that time to be released. Grrr.
Then one of the endocrine doctors popping in to say that I might have to go on medication. Confused because I'd been told medication wouldn't work for my type of tumor I questioned that. The guy stalked over to the computer where they'd been entering my vital signs and brought my record. There was a old report from 2007 that said last time my tumor tissue tested positive for prolactin.
What?
I started to explain what Dr. Delashaw had told us. The man interrupted, "if you’ll let me speak". Startled by his rudeness I fell silent. He made a few remarks on how medication works on prolactinomas then left. A good thing because though I was still on a lot of pain medication and weak from surgery my sweet, even tempered husband was only seconds from tossing him out.
An hour later my endocrinologist came in, said about the same thing and we just stared at her wondering if somehow we'd misunderstood in January. I decided then to ask about one of my hormones that was low 'normal' and she gave me a lecture on how giving medication when someone was ‘normal’ would lead to other problems. This was a complete 180 from her attitude during my pre surgery appointment when she assured us everyone’s normal was different, her focus wouldn't be on numbers but making me feel well. To my utter embarrassment, I started to cry and luckily she left.
Chris comforted me and after a couple moments I regained composure. We set aside our confusion, deliberately focusing on my recovery. We'll demand clarification on my follow up visit when I'm stronger.
3/2/09
home from hospital and doing well
Dr. Delashaw believes he got most of my tumor. Won’t know how much remains until the follow up MRI in May.
I had a cerebral spinal fluid leak, a complication that kept me in hospital a couple days longer. A drain was placed at bottom of my spine to drain off spinal fluid to keep pressure off the leak until it repaired itself. Three days of sitting up in bed only allowed to move if nurse assisted sucked. Horrific headaches that increased dramatically after any movement, so for three days I remained mostly still. Sunday afternoon they finally removed the drain and nasal packing. It felt amazing to move, lay down and breath through my nose.
Last Monday afternoon I came home. I'm doing okay. As expected I'm sleepy, tired and have throbbing headaches that haunt me but every day is better than the one before.
Have appointment Friday, the start of several endocrinology appointments to see how my pituitary is functioning.
I had a cerebral spinal fluid leak, a complication that kept me in hospital a couple days longer. A drain was placed at bottom of my spine to drain off spinal fluid to keep pressure off the leak until it repaired itself. Three days of sitting up in bed only allowed to move if nurse assisted sucked. Horrific headaches that increased dramatically after any movement, so for three days I remained mostly still. Sunday afternoon they finally removed the drain and nasal packing. It felt amazing to move, lay down and breath through my nose.
Last Monday afternoon I came home. I'm doing okay. As expected I'm sleepy, tired and have throbbing headaches that haunt me but every day is better than the one before.
Have appointment Friday, the start of several endocrinology appointments to see how my pituitary is functioning.
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