Questions relating to a tumor on my pituitrary gland.

[anothername]

I was diagnosed with a tumor on my pituitrary gland when I was 19, I am now 43 next month. At first they told me it was a calcium deposit I found out 6 years later that it was a tumor. I have had regular CT Scans or MIRs every 2 years till I moved to Queensland. In Queensland it is different and hard to get MIRs without a specialist giving the go ahead. Last scan was 2004. I am due to have one next week. The findings in my last scan were as follows:
"Findings:
There is a well defined ovoid hyperdense mass at the superior aspect of the pituitary gland extending upwards into the suprasellar cistern and slightly posteriorly over the top of the dorsum sellae. The lesion measures approximately 11mm AP, 8mm transverse and 7mm in height. The lesion is closely contiguous with the remainder of the pituitary gland which is of normal size. There is no apparent bony erosion and the cavernous sinuses appear normal. No intracerebral lesion is detected.
Conclusion:
Small suprasellar mass. Differential diagnosis includes pituitary adenoma and suprasellar meningioma. "

I didn't have the dye as it turns out I can not as I have thyroid problems - thyrotoxicosis and can not have the dye. The last time I saw the specialist he question surgery. But I am with the thinking if it aint broken don't fix it. But over the last few years things have gone from bad to worst. After being diagnosed with a thyroid problem and going on PTU I have put on approximately 30 kilos, I can handle the fact that I can't fit into a size 10 anymore but I hate the fact that I look pregnant and the stress it puts on my low back. I got Bells Palsy on the left side of my face. I lost my smile but most things work ok except the nerves got mixed up so that when I smile the left eye twitches. I was recently diagnosed with Fibromyalgia but having read the latest about pituitary tumors the symptoms are very much the same. Over the last year I have been seeing things. By this I mean at night when I am trying to sleep for some unknown reason I am jolted from sleep and when I look at the ceiling or wall I see things moving. At first it was just like shadows then it turned into shapes. The shape looks like a spider and I have to say since moving to Queensland I have a fear of spiders as they are really large up here. Anyway sometimes I open my eyes and find them dangling from a web in front of my face. I jump back turn on the light they disappear. Now I know they are not real but it's getting to the stage I don't want to go to sleep. I actually dread it. A few weeks back I got sick of these visions that I got the broom and hit the spider shape so I do really know they are not there cause it didn't kill it. The other night I opened my eyes and could have swore an arm waved in front of my eyes. I say arm because that was the colour I saw but it was just a flash and then gone made me jump though. I have told the doctor and got him to check my eyes he says I do have floaters to which I can see and thought that this could be the problem. But after reading what I have read I am more inclined to think it is the tumor because I also get real bad headaches that take days to go away and headache tablets don't work. The headaches are behind the eyes, but just to say I have  headache most days the pain level just changes from mild to extreme. Anyway to my question and it is to what I am seeing. Is it possible to see moving things that are not there because of the tumor? The only things that I can find say double vision, blurred vision or dropping eyelid. The things I have seen in the last two days are like skinny legs moving around in a circle. Very much like looking into a microscope. One thing I forgot to mention in my blood test for my thyroid levels everything is in the normal range except for my pituitrary levels to which are slightly elevated but the doctor said that it might just be normal for me as I have the tumor. Well that it so any help with my visions would be appreciated. Thanks in advance.

[rumpled]

Ectopic means it is in another place - like the lung usually, but it can be anywhere. Yes, they are rare. So is your tumor.

They are saying in the report that your lesion is not typical and that you have one on your pituitary stalk. Stalk rumors can cut off the blood supply to the whole pituitary.

"Pituitary stalk tumors are relatively rare group of intracranial tumors and often very slow growing. Symptoms vary depending upon size, nature, position and local effects which are predominantly compressive in nature. Regular review and high degree of suspicion is often needed to diagnose at early stages."

I take reductions in size with a grain of salt... the machines have to do things in slices, and so they *miss* - mine used to get different sizes all the time - but when surgery came, it was a tad bigger than anyone expected.

I would still think your symptoms are from your tumor. Especially the headaches.

[anothername]

Got the results today they say it still only one and it has had a substantial reduction in size it is now only 9x4x3 mm instead of the 11x8x7mm it was 5 years ago. What the comments where was:

'The known suprasellar lesion is not  a typical pituitary adenoma, although an ectopic adenoma of the stalk remains a likely consideration. In any event, the lesion shows a substantial reduction in size over the last 5 years without treatment.'

It also says about having a MRI to show more and that there is no evidence of compression of a chiasm and there is no clear reason for my visions or headaches. So as far as they know it's not the tumor that is causing problems. Which is good news no need to operate. I looked up ectopic adenoma but all I found was medical stuff no real info on it.  All it say was they were rare. But I guess I find on my next appointment.  I am gonna go into a glasses shop and get them to have a look at my eyes when I walk past them this week. They might be able to see something. It is possible it might be cause from a few other things so only like sinuses or even a head injury from a few years back so gonna get the doctor to check on those too.

[sugarsmommie]

Rumpled is right. CT's are not the test of choice for pituitary tumors. MRI's with contrast usually are the tests preferred to show those tumors and how big they are. I have had issues with a pit tumor since 2004. I have had many repeated MRI's with contrast for the same tumor. Sounds like she was just trying to help and not scare you. Sorry that took place. There's lots of information on the web that should help. Have you looked into websites like the following for more info? Pituitary Network has a good website with lots of info. If you type in "pituitary tumor" in any search engine it comes up with LOTS of websites. American Brain Tumor Association is another good website. Either way you go about it, it sounds like they need to get to the bottom of what's causing your symptoms. Educating yourself in order to help yourself is the 1st step. Headaches like you describe, i had due to the pit tumor. Sounds like they need to get you to a good opthomologist that knows how to test for issues related to a pit tumor. Good luck with your tests. Hope this has helped...that's what rumpled was trying to do. Hang in there.

[rumpled]

It is in the conclusion -
"Conclusion: Small suprasellar mass. Differential diagnosis includes pituitary adenoma and suprasellar meningioma. "

Those are two different types of lesions.

I am not trying to scare you at all. Just letting you know what I know. I am so sorry you are freaked out. Menigiomas are also benign. I thought you knew. But you are not the first person I have run into given the wrong scans, or had two lesions (I did, several friends did) and I know of at least one other person with a pit tumor and menigioma.

You can do your own research and find out everything I have told you, but I had no intention of frightening you and for that, I am truly sorry.

[anothername]

I am confused. I have never been told I had two tumors. Not by any doctor so where do you get this from what I thought it was the same thing. As for CT scans showing up a pit tumor you are the only one who has ever said that no professionals have. I think I am better of leaving this site cause you are scaring the hell out of me and that is not good. I went from only wanting to know if seeing things could be a symptom to being totally freak out. Thanks for that I appreciated it. Bye.

[rumpled]

I assume the CT was for the menigioma - not the pit tumor, as pit tumors are not usually visible on CTs.
Yes, contrasts do cause issues so that is why they ask questions.

Have you seen a neuro-opthomologist?

[anothername]

Thanks for the answer. I have done a lot of research and I had a CT scan today. I'm not sure if was because I couldn't have the dye because of the thyroid medicine that I was but gee they asked a lot of questions. So I am guessing something is up. Good thing is that at least I know now I am not going crazy. Seeing things don't really scare me so much now. I have another problem that only just started which I think it could be related between my eyes where the top of my nose is there is a lump. It wasn't there this morning or at least I didn't notice it. It doesn't hurt though. I have been feeling very tired today but that could be because of an antihistamine that I took early today cause of hay fever. Anyway if it gets worst I will go to the docs tomorrow if not I will have to wait til Tuesday to find out the results. I will let you know how it goes. Depending on the results I will to which method I will use to get rid of it. Either way its time they did something.

Thanks again.

[rumpled]

You have a macro- adenoma. In most cases, it would have and IMHO, should have been removed.

It is probably non-secreting, but that does not mean no symptoms - it would cause the headaches, and the eye issues. It can also put the pressure on the pituitary and start to cause issues.

I have to beg to differ with the doc - there is nothing normal about abnormal tests - and it is not normal to have the tumor - it should be addressed before you lose your sight, have a stroke or worse. I would find another doctor. Please read up on pituitary tumors.