Looking to talk to others with pituitary cyst. Is vision loss related?

Hi Sauvee,
I'm bringing @kdubois @dailychronicsupportgroup and @upartist into this discussion. They have each talked about pituitary issues that may be relevant. What questions have you thought about asking the neurosurgeon?

Thank you. What type of cyst is it, can it be treated with proton beam, is it the cause of vision loss episode, hair loss, chronic pain, numb legs, is it harmless, why do I have it etc, can I go away for awhile?

Hello Sauvee,
I am sorry to hear about your pituitary cyst, however information is helpful. While my grandmother, and great grandfather preceded the diagnostics and surgical options we have to work with today, my daughter benefited from advancing technology. Her cystic growth on the pituitary had no noticeable symptoms beyond unexplained lactation. We had a suspicious family practitioner who pursued that strange and small anomaly. The MRI showed a macro adenoma on the pituitary. While there were differing opinions locally, our suspicious Doc sent us directly to Mayo. It was a good decision! Vision was first to be looked at (visual field test). The structures are very small and close together around the gland, to include the optic nerve. These tumors can be functional, which means they can vaguely or obviously affect other systems of the body; such as the thyroid, adrenals, etc. other symptoms can occur, and be vague. These symptoms can take time to narrow down a diagnosis of tumor, cyst, etc. Yours has already appeared on imaging. With my daughter, We tried medication to shrink the growth, unsuccessfully. The surgery was successful, but had we waited, it would not have been so. Waiting was not an option offered to us. The proton beam did not exist at that time, so definitely ask your neurosurgeon about that possibility. Also definitely have Endocronology involved with your pre and post process. They will look at the rest of your systems in relation to your pituitary and the growth, especially the adrenal glands which dictate your bodily response to stress...... Heart rate, blood pressure, etc. The growth may be on or next to the gland itself, but the effects on the rest of the body can be clarified by the Endocronologist long term. I realize this must be terrifying to you.... It was for us! In fact it's hard to write this note to you, but therapeutic. Good luck to you! My daughter is happy and healthy now, and an athlete! I truly send my prayers to you!
UPArtist

Hello @sauvee, I have experience with pituitary adenomas (tumors). I'm not sure if a pituitary "cyst" is the same thing, but given the symptoms you are experiencing and the knowledge that there is something located on your pituitary gland, I suggest consulting with an endocrinologist and a neurosurgeon, hopefully two doctors that partner regularly. An endocrinologist is essential in proper treatment of these things.

There are different diagnoses for pituitary adenomas based on the location of the adenoma because the location defines the diagnoses along with lab testing:
• Adenomas on the front of the pituitary (anterior) usually result in the body's production of too much growth hormone and insulin-like growth factor 1 (another growth hormone).
• Adenomas located on the back of the pituitary (posterior) are called a prolactinoma. This causes the body to produce too much of the hormone called prolactin.

When you first see an endocrinologist, they will send you for a bunch of lab tests to determine if these, plus other, levels are higher than standard range. (FYI, by "high" they don't mean a few points above high, they mean levels that are significantly higher than normal.)

The treatment option usually chosen first is resection of the tumor via surgery. If that fails, then they use medication to control the hormone levels.

Increases in all of these hormones can cause weight gain, chronic fatigue, body wide aches and pains, and more.
• When the issue is the growth hormones, you can also experience profuse, unexplained sweating, and over time, growth of feet, hands, and head. This medical condition is called acromegaly. Children for have acromegaly also grow very tall.
• Increased prolactin levels can cause breast leakage (in both men and women).

It is not uncommon for a pituitary adenoma that becomes large enough to affect vision.

I just found out I have a cyst on my pituitary gland. For years I've had several different things go wrong with my body. I've had several different tests done but never mri with contrast till now. I'm kind of upset my doctors didn't find it sooner. Since 1990 I was in a terrible car wreck. I know what this involves too. My best friend just went blind and had surgery for this. Also 2 other friends have this also.

Hi, @mopardee70 - welcome to Mayo Clinic Connect. That must have been challenging to have several different things go wrong with your body for years, and I'm glad to hear you have now gotten a diagnosis, the cyst on your pituitary gland.

Hoping that @kdubois @sauvee @upartist will return to offer their input with your new diagnosis and their support. I'd also like to invite @desertrose34 @loriagee71 @kariulrich into this conversation.

As you move forward now with this new diagnosis, @mopardee70, what are your main concerns?

Thank you for posting all this good information on pituitary tumors. My daughter in-law had surgery last year for a large (acromegaly) pituitary tumor that due to it being close to artery, surgeons could not completely remove. Five months after the surgery, the tumor had grown back and she is now scheduled to have surgery again, with radiation treatment following. Fortunately, she has not had diminished vision.