I,ve macroadenoma in my hipophis(16mm).I know about it accidently by MRI.I,m OK now and have no problem(my visual field and hormones are Normal.).Now some doctors told me It,s better to operate it without waiting and some other,s told me It,s better to wait for 3months and get MRI again,then we decide.now Idon,t know what to do.
I am not a doctor. But I am a pituitary patient. I will give you information that hopefully will help you.
Pit tumors are divided in two classifications - micro (under 10mm) and macro (over 10mm).
Did you get your hormonal tests done by a pituitary endocrinologist? Were then done at 8am fasting, and did you get a copy? Did ALL the pituitary hormones get checked, and did they do various urine and many many blood tests - if not, you may not have had a complete evaluation. However, many larger tumors are called non-functioning which means that they do not secrete hormones.
Get a copy of the report and look where the tumor sits. Even though your tumor may not be effecting your eyesight, see if it is growing up near your optic nerve, or down into the cavernous sinus, or doing generally not so good things like wrapping around a carotid. It pays to know so as operating on a smaller tumor is better than a larger one.
That being said, in general, once you have found a non-functioning macro-adenoma, it is generally know that all they do is GROW. So waiting does nothing but makes surgery more complex.
You need an extremely qualified surgeon - as in more than 500 surgeries and knows what he is doing with a macro tumor.
You need to be under the care of a pituitary center. After surgery, you will still need monitoring. Hormones may be okay now, but you may lose some in the surgery depending on how the tumor sits and the skill of the surgeon.
Surgical skill is the #1 factor in the good outcome of your surgery. The second the the anatomy of your tumor - you have no control over that one! So pick the first well!
I am 32 years old and first had issues with my left eye in 2009 (lazy eye), after having my baby eye went back to normal so dr was not concerned. In 2011 pregnant with my second child the symptoms returned, this time left eye was lazy and actually quit moving, was sent to eye dr who could not find any issues and after having my baby symptoms went away again. In April 2014 I started a diet and was put on an appetite suppressant to help me lose weight a month into weight loss I started having double vision when I would look to the left. Went back to eye dr, did an MRI and said it showed a growth in my pituitary gland and referred me to a neurological surgery institute...I called the institute and they said they set appointments by when the referral was received...So now I am freaking out...What is usually the steps that are started and should I really be waiting since I have been having this eye issue now for 3 months.
You should be going to a pituitary center. You need an experienced pituitary surgeon, not just any neurosurgeon.
You also need testing to determine the type of tumor - you may not need surgery at all. Some tumors respond to medications. You need a neuro-endocrinologist to determine the nature of the tumor, and refer you to a proper surgeon only if needed.
Please find a pituitary center - larger hospitals and university hospitals typically have them.
I am getting a dr to refer me to Emory in Atlanta Ga...So even though the tumor is causing vision problems that does not necessarily mean I will need surgery...I am praying not....What types of questions should I ask...I am open to all suggestions an opinions..I have a copy of my mri scan also if anyone on here could take a look.
okay rumpled you seem very helpful...I went to just a neurologist that my eye dr referred me to just to see what he would tell me...Well unfortunately he did not even speak to me he sent in his assistant who told me that the tumor was not on my pituitary but next to it and that since it is only affecting my vision they are going to watch it...and ordered me some type of scan to check to see if there was blood vessels running to it and that it also looked benign...So now I am really scared and confused...
"Only?" - run, do not walk away from that doctor IMHO, and find a pituitary center ASAP... the optic nerve is not forgiving. Not at all.
Waiting will only make you lose part of not all of your sight - not a good option.
It is benign. That is not the issue. Find, please, a proper doctor who will identify the type of tumor - even if it non-functioning (which tend to be the larger, faster growing tumors) and get the proper treatment for the type of tumor.
I am not feeling well myself so just not up to long posts right now. You have every right to be scared and confused - but a neurologist cannot and does not treat pituitary.
Hi Rumpled wanted to give you an update since you have helped me along this path...The doctor informed me today the type if tumor I have is a benign meningioma in my sella, it has strategically wrapped itself around my optic chasim and untwined itself in some very important arteries. The doctor said surgery is to risky and the best option it radiation therapy over a give week period. He said he is very confident this will take care of it...I feel a lot better with knowing what's going on, but now have the stress of new fears...any input from you on this or suggestions...thanks for being here and giving me someone to talk to who really understands....
Thank you for the update!
There was someone else who posted several years ago who had a meningioma and in a very similar place.
The risk is that it is wrapped around the optic nerve. Just FYI - there is risk in the radiation too with radiation leakage if they get too near the nerve, so go to a good place, and ask about how the beams will be places to protect your optic nerve and those arteries. I am all in favor of the proton beam if you can get it. Less long term effects to health tissue.
Surgery is risky - but ask some skull base surgeons aka pit surgeons for opinions - you may/may not get some to de bulk the tumor a bit. If you wish.
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