Friday was long day. My appointment started at nine and we walked out of OHSU a couple minutes past noon. So much information my head hurts and this time I don't think I can blame the tumor.
Blood work results will take at least a week.
Dr. Delashaw, the neurosurgeon and specialist on primary brain tumors, reviewed all my MRI’s and concluded that in 2006 my pituitary tumor was misdiagnosed. My elevated prolactin then was a ‘stalk’ effect, the mass of the tumor pressing against the pituitary cells caused malfunction.
I have a non-functioning pituitary tumor. It doesn't secret hormones which explains why I felt so bad (tumor was growing)yet my hormone levels remained normal. I also explains why the medication I was given didn’t effect it. Medication doesn't effect a non functioning tumor.
Dr. Delashaw examined all my previous MRI's and informed us that the 2007 surgery didn't remove all the tumor as I'd been told.
So the mass effects of the tumor which is now larger than it was prior to surgery is the root cause of my medical. Nice to know I’m not crazy.
I wonder why just one of the many doctors I saw last year didn’t take 5 minutes and call a specialist like Dr. Delashaw. Why didn't they make certain before patting me figuratively on the head? Before saying ‘while its understandable why what I’d been though would make me anxious about my pituitary not everything is related to it.’ Well it was and is. The pituitary isn’t called the master gland for nothing. 5 minutes vs. a year of my life. Grrr.
Moving on.
When a non-functioning tumor grows to the point it's causing problems there are few options. At this time surgery is it.
Radiation isn’t recommended because it would cause me to lose all pituitary function and if that can be avoided it should be.
Dr. Delashaw wants to schedule surgery ASAP. He’ll try to remove as much as possible using an inoperative MRI, detailed imaging during surgery but warns full removal is usually impossible. Lessening the pressure buys me functioning time. Surgery isn’t a solution but a management tool. I’ll be managing the care of my pituitary for the rest of my life. I’ll probably have to have surgery yet again but the hope is that if enough is removed it’ll take many years before it regrows to the point where I'm at now, where it’s causing problems.
Surgery is scheduled for Feb. 19th 2009 at OHSU.
1/26/09
1/12/09
An Appointment
Dr. Delashaw's assistant just called and I scheduled an appointment!
On Jan. 23 I hope to have a least some of my questions answered.
Fingers crossed.
On Jan. 23 I hope to have a least some of my questions answered.
Fingers crossed.
1/10/09
Worry or tumor?
I feel so emotional, wanting to scream it’s not fair. I'm having a hard time sleeping with a monster headache for the last 12 hours.
I wonder is it caused by worry or the tumor?
I wish I could fast forward to summer, I'd be out camping with my hubby and boys and all this would be a fading memory.
I wonder is it caused by worry or the tumor?
I wish I could fast forward to summer, I'd be out camping with my hubby and boys and all this would be a fading memory.
1/7/09
A wonderful person
in HR has stepped in to help straighten out the snags between the doctors' offices and our insurance. I should hear from Dr. Delashaw by tomorrow.
Fingers crossed I get an appointment, some answers and options soon. :)
Fingers crossed I get an appointment, some answers and options soon. :)
1/6/09
waiting for an appointment
Still haven't gotten in to see Dr. Delashaw.
Sigh
It's hard to wait for answers and information on options, I want to know NOW :)
Think speedy thoughts for me please.
Sigh
It's hard to wait for answers and information on options, I want to know NOW :)
Think speedy thoughts for me please.
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