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Old 05-15-2008, 09:23 AM
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Default Macroadenoma - Benign tumor on pituitary gland

I really didn't know where to put this thread so I put it here. I am just basically looking for anyone out there to tell me they had this and to give me a success story because I am not really finding many answers.

I had my son 3 years ago last month and since then I only had a handful of periods (mostly at the beginning and none now) and I have been lactating since. I went to the doctors last year and the gynecologist but I didn't follow up with the blood work until this year (just procrastination and stupidity). Well I finally got my blood work done this year and was told my prolactin levels were high and I was scheduled for an MRI. I had that last week and got my results back yesterday saying that I had a macroadenoma (tumor on the pituitary gland) and that I was referred to a neurologist. Anyone gone through anything like this?
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Old 05-15-2008, 12:11 PM
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Macroadenoma is a benign (non-cancerous) growth in the pituitary gland that is larger than 10 millimeters in size.

I don't know anyone that's gone through this Briliam...sorry.

Can anyone help?
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Old 12-08-2008, 09:33 PM
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I do!!! I was diagnosed just this year after being hospitalized with bacterial meningitis...it was when they did my MRI that it showed. After 2 surgeries my neurosurgeon told me there was no tumour...yay for me!!! He said all he found was infection...only for my follow up mri to show it is there.

I felt like I was the only one out there with this, I see your post is from awhile back...how are you doing?
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Old 08-17-2009, 11:10 AM
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Default same but micro

I have had similair symptoms. I had a normal pregnancy and gave birth to a healthy boy. I went on depo provera (birth control) for only one dose, two years later i was concerne i did not recieve my normal menstrual cycle, went to the docotr and took blood work, found my prolactin levels were high and was scheduled for an mri immediately and found a small pea size tumor on the pituatary gland. It is inoperable but i have heard they have surgery done in the U.S. I am currently finding out more and also want to find others who this has happened to as well. I was told this happens to 3/5 people but does it when i've had 2 miscarriages with empty sacs? Thats what has happened to me. Right now i am scheduled for another appointment with a neurologist. It is frustrating but we'll pull through with God's will.
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Old 06-03-2010, 01:25 PM
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Just curious if Brilliam found any answers or help? I am 2 years into still dealing with the tumor, my neuro keeps sending me for MRI's and giving me the run around. I am now at the point of cronic headaches and misrable trying to figure out why he won't just do something!!
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Old 06-04-2010, 11:15 AM
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Hi Donna,
You are so right!! I think I have been way to passive and just accepting the 'brush offs'. I always put on a brave face and just accept what they say, only to come home and cry and deal with the pain.

I wonder if my neuro is this way because he did my first surgery and when I came out he told me and my family there was no tumor, it was only infection and then on top of that I developed a csf leak and had to have yet another surgery. When I went for my follow up MRI it showed the tumor was there...he had just missed it!!!
I have had my eyes tested and he doesn't tell me the results, just that there is not a HUGE concern (yet I feel my eyes get fuzzy and my vision has changed).
I am thinking of going back to my endo dr and getting her on my side to get the ball rolling. I am going to borrow your line and start asking who I sue! Great idea.
How are you now? Did the surgery damage your pituitary at all? (they keep telling me it could and that could be worse than living with the tumor) How is your vision?
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Old 06-04-2010, 12:17 PM
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In the city where my Neuro is there are tons of others. That's why I am so frusterated that it's not easier to get referred to someone else, but I think that goes back to me not being more forcefull.
I go for my MRI on the 15th and I am just going to bluntly ask my doctor why she is hesitating to just referr me to someone else.
Thank you for your encouragement, I was starting to feel it really was "all in my head".
The eye tests he sent me for were feild visual testing. The tumor is pressing on my optic nerve....so scary to think I could go blind from the doctors hesitation...lazyness....not caring....take your pick.
I am going to read the website you put up. Thank you so much!! It's so nice to know there are others out there who have had to deal with this as well (sad that we even have to deal with it though).
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Old 06-04-2010, 02:16 PM
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Thank you so much!! I had no idea there was a test like that. I am so upset my Neuro didn't even send me for that. The other tests I had only tested my periphial (sp) vision. This is awesome information for me to go into the doctor with. Just today I recieved a msg I need to call his office! Fingers crossed!
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Old 03-16-2011, 02:31 PM
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Smile Have you tried any drugs?

I was recently diagnosed with a similar condition, I had headaches for a good while that I put down to sinusitis and then last Oct my vision went cloudy and I noticed my pupils were uneven I went to hospital and they did some tests and found a 3cm tumor. They gave me dostinex (cabergoline) to take twice a week, headaches were gone the next day and my vision returned to normal after a week and a half, also would be nice to hear from others with the same issue?
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Old 03-17-2011, 06:19 AM
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Quote:
Originally Posted by Donna View Post
hi,
are they going to take out the tumor? i know someone who is on caber to lower her ACTH but that is after having gamma knife(radiation). i have had the pituitary surgery to remove the first tumor and when the second tumor came they used the gamma knife. i am now on Keto to lower the cortisol and if my ACTH is not coming down on my next blood work then the might start me on the Caber. The tumor causes Cushings disease. i have not heard of anyone taking just the Caber without having had surgery first to remove the tumor.
At the moment the doc says the drugs would be better than surgery. I will have an MRI in 5 months and I have regular checkups.
They say I have a secretary tumor and my prolactin levels are high, what the cabergoline will do is bring down my prolactin levels and hopefully shrink the tumor. I don't fancy surgery or the gamma knife, however I haven't heard many success stories of drugs alone...
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Old 05-19-2011, 02:09 PM
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I was diagnosed with my pituitary tumor right before Christmas. I am a big guy so our MRI machine will not accept my broad shoulders so I have to travel out of provice to get an MRI...I have had 2 CT scans but the Dr wants more definition to a scan...I do not have alot of the symptoms...I am lathargic and get severe headaches...but the dr almost wants me to have vision problems to justify the risk/reward of having surgery. I will be going to Quebec City in the coming weeks for my MRI and hopefully can get this all figured out.
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