This is supposed to be the easy part. Have tumor, have diagnosis, have referral, get surgeon - right?
Nothing comes easy in medicine anymore, or at least not for me.
Ten years ago I made a friend in Los Angeles; it was like meeting a long lost brother. The weirdest experience in meeting someone and the most comforting one also. When I first moved to LA I roomed with him for about a year. His cousin Ginnie is a very interesting woman who does spiritual travel tours. She is into everything and anything paranormal, is that the right word? From arranging group tours of Machu Picchu to Stonehenge, she's your girl when you want to seek out something different. She also knows the best ghost trackers and clairvoyants. We went to lunch one day and I asked her if I had some sort of hex on me, as I can get bad service anywhere. lol She leaned back and took me in, then leaned back in and confided that indeed there was a problem. I have an 'inverted aura', she said. According to her it is common in people with severe ailments. I think she was finding a nice was to say I am transparent. :)
It must be my aura that is keeping two surgeon assistants from returning my calls, despite my daily inquiries. Either that or I am getting the hint that no one is allowed to contemplate scheduling surgery if they are planning their holiday festivities. *sigh*
When my heart gives out, I'm sure it'll be at shift change. On a Friday. Before Christmas. Or in June, with fresh interns. Good Lord, the medical community is hell-bent on killing me.
Wednesday, November 22, 2006
Wednesday, November 15, 2006
Surgical Consult
I saw the surgeon for my consult today. We sat down in the conference room and pulled up my last MRI on the huge monitor attached to the wall.
He flips through my MRI images, points to this tumor and tells me that this is the absolute worst location for a pituitary tumor; midline. If I have it operated on I have a 50% chance of losing all pituitary function, including ADH (antidiuretic hormone).
That'd mean my body would be unable to concentrate my urine and I'd be dependent on medication for the rest of my life, along with other medications to replace the rest of the hormones I'd lack for (I already am missing most of them). I happen to know a few people with DI and it truly is a horror-story disease. Insurance companies don't want to pay for the medications because it is so expensive, medications don't work all that well and it just haunts your day, all day - every day. I've read quite a bit about it, but none of it describes the daily battles my friends go through or the games insurance companies play to not pay for the medication. Ugh.
He tried to blame my 2-1/2 year headache on something neurological or optical, the typical shuffling off of the problem to another specialty or doctor to deal with. But I've been to the top of the food chain for specialists in Southern California and I called him on it. He supposed that I may have a small bleed off of the tumor area that is irritating my optic nerve (left eye) and research shows that even the smallest of pituitary tumors can cause incredible headaches. Size doesn't matter, for some reason the excess hormones they produce triggers intracranial pressure. The left eye problem leaves me unable to drive after dark and the constant headache is debilitating, fentanyl & morphine or not.
He recommended that I wait until things got worse, bad enough that 50% was a better choice.
I'm not sure if I want to know what is worse than wracked with pain, chronically bedridden, unable to keep up with just the dishes, properly care for my kids, or - you know - work in my profession & support myself.
Can this be any more of a nightmare????
He's supposed to call my specialist and discuss our meeting with him. And for what it is worth, he has been following my case for over a year through my specialist - so my MRIs and condition aren't new news to him and he's had plenty of time to review the films.
Maybe I am at a point where I am so invested and depressed that all I hear in regards to my case are the negatives, and perhaps my specialist will email me that I am on my way to surgery? Who knows. I don't know, but when I find out - I'll post about it.
He flips through my MRI images, points to this tumor and tells me that this is the absolute worst location for a pituitary tumor; midline. If I have it operated on I have a 50% chance of losing all pituitary function, including ADH (antidiuretic hormone).
That'd mean my body would be unable to concentrate my urine and I'd be dependent on medication for the rest of my life, along with other medications to replace the rest of the hormones I'd lack for (I already am missing most of them). I happen to know a few people with DI and it truly is a horror-story disease. Insurance companies don't want to pay for the medications because it is so expensive, medications don't work all that well and it just haunts your day, all day - every day. I've read quite a bit about it, but none of it describes the daily battles my friends go through or the games insurance companies play to not pay for the medication. Ugh.
He tried to blame my 2-1/2 year headache on something neurological or optical, the typical shuffling off of the problem to another specialty or doctor to deal with. But I've been to the top of the food chain for specialists in Southern California and I called him on it. He supposed that I may have a small bleed off of the tumor area that is irritating my optic nerve (left eye) and research shows that even the smallest of pituitary tumors can cause incredible headaches. Size doesn't matter, for some reason the excess hormones they produce triggers intracranial pressure. The left eye problem leaves me unable to drive after dark and the constant headache is debilitating, fentanyl & morphine or not.
He recommended that I wait until things got worse, bad enough that 50% was a better choice.
I'm not sure if I want to know what is worse than wracked with pain, chronically bedridden, unable to keep up with just the dishes, properly care for my kids, or - you know - work in my profession & support myself.
Can this be any more of a nightmare????
He's supposed to call my specialist and discuss our meeting with him. And for what it is worth, he has been following my case for over a year through my specialist - so my MRIs and condition aren't new news to him and he's had plenty of time to review the films.
Maybe I am at a point where I am so invested and depressed that all I hear in regards to my case are the negatives, and perhaps my specialist will email me that I am on my way to surgery? Who knows. I don't know, but when I find out - I'll post about it.
Thursday, November 09, 2006
In my email today:
The Star card suggests that your alter ego is the Goddess, whose superpower for rising to the occasion lies in your innate ability for inspiration. Pursue your dreams and what makes you happy -- life's too short. Allow time for you today. You may even get your fifteen minutes of fame by seeking recognition from others and striving to sparkle in the limelight. You are immortal! Sometimes it's better to burn out than just fade away.
Friday, November 03, 2006
Surgical consultation next week
I hope. I'll keep my fingers crossed. I have completed the cardiology appointment and subsequent scan at Cedars-Sinai. Also went to the ophthalmologist and followed up with the visual field test. Those were the final tests, folks. (Folks, as if anyone is listening - rofl!)
Cedars-Sinai tried to kill me. My standing pulse was running 111, I thought for sure it would go down if I just had a few minutes of rest on the cot. To my surprise it only lowered my pulse to 96. I guess that is what I gave up when I stopped taking Atenolol after the Stress Echos showed that my blood pressure was bottoming out and bottoming out worse while on Atenolol. Anyhow, the on-call cardiologist at C-S tried to give me 100mg right off the bat, but my bp was 100/60 and I drove myself there. Yikes. I talked them into trying 50mg but they weren't happy that it 'only' drove my heart down to 73bpm. WTH? After 100mg they couldn't give me nitro on the CT table because my bp was too low. Uh, duh!? 68/40 is quite low, you say? Then I had to get up and drive myself home to watch my two children. Good Lord.
I made my husband hire a babysitter. Mind you, this is a man that laughs in my face when I tell him I am sick and would not lift a finger to help me even though our children suffer for my inability to do what I used to do. Little things like, get out of bed every day - or - clean the house - or - do laundry to completion - or - make homemade meals and bake from scratch like I used to. :( I didn't give him a choice this time and it wasn't up for discussion. My chest felt imploded the whole drive home.
The visual field test showed a splatter of blind spots off on the edges of both of my visual fields. I expected it, as I bump into people that stand beside me in blind spots all the time. I work extra hard in traffic to check, re-check and look directly when I am changing lanes because I know I have a deficit. I didn't need anyone to tell me there is a problem, but at least the proof is there this time.
I wish I felt up to mixing in family posts with my updates. Here is a picture of my baby girl, she was Tinker Bell for Halloween and loved every moment. Every compliment made her walk even more dainty; she has the cutest 'dainty' walk and loves to play ballerina. I asked her to model her Tinker Bell outfit again today and she found it in a flash. lol
Cedars-Sinai tried to kill me. My standing pulse was running 111, I thought for sure it would go down if I just had a few minutes of rest on the cot. To my surprise it only lowered my pulse to 96. I guess that is what I gave up when I stopped taking Atenolol after the Stress Echos showed that my blood pressure was bottoming out and bottoming out worse while on Atenolol. Anyhow, the on-call cardiologist at C-S tried to give me 100mg right off the bat, but my bp was 100/60 and I drove myself there. Yikes. I talked them into trying 50mg but they weren't happy that it 'only' drove my heart down to 73bpm. WTH? After 100mg they couldn't give me nitro on the CT table because my bp was too low. Uh, duh!? 68/40 is quite low, you say? Then I had to get up and drive myself home to watch my two children. Good Lord.
I made my husband hire a babysitter. Mind you, this is a man that laughs in my face when I tell him I am sick and would not lift a finger to help me even though our children suffer for my inability to do what I used to do. Little things like, get out of bed every day - or - clean the house - or - do laundry to completion - or - make homemade meals and bake from scratch like I used to. :( I didn't give him a choice this time and it wasn't up for discussion. My chest felt imploded the whole drive home.
The visual field test showed a splatter of blind spots off on the edges of both of my visual fields. I expected it, as I bump into people that stand beside me in blind spots all the time. I work extra hard in traffic to check, re-check and look directly when I am changing lanes because I know I have a deficit. I didn't need anyone to tell me there is a problem, but at least the proof is there this time.
I wish I felt up to mixing in family posts with my updates. Here is a picture of my baby girl, she was Tinker Bell for Halloween and loved every moment. Every compliment made her walk even more dainty; she has the cutest 'dainty' walk and loves to play ballerina. I asked her to model her Tinker Bell outfit again today and she found it in a flash. lol
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