Pituitary Cyst

My neurologist won't be in until tomorrow, but I spoke with a nurse about the reults of a brain MRI I had done a week ago.  She said the results showed some abnormalities and a possible cyst on my pituitary gland.  She said she would print the report and leave a note for the neurologist that I would like him to call.

I am looking for information.  I can find a lot on Pituitary tumors but not on cysts.  Does anyone know of information on pituitary cysts?

My symptoms are extreme fatigue, weakness, instability, nausea, brain fog and chills and tremors.  I have had them since, at least, June of this year and they seem to be getting worse.  Other than medical appointments, I haven't left the house much.  Just a few trips to my daughter's family and some small trips to the store just so I can do something..  This is very frustrating. Can these symptoms be caused by a pituitary cyst?

Thanks for any advice.

[horselip]

Hi Richard-
I had a Rathke's Cleft Cyst. But pretty much the information that is on the internet about non-secreting tumors is similar to the ifs, ands, and buts of cysts.There more common ones are Rathke's Cleft, Craniopharyngioma and Arachnoid cyst.
Having these names will help you to better search for quality information in on the web.

Your symptoms could 100% be due to your cyst and/or hormones that it is affecting.

I had all of your symptoms and more. PLEASE keep in mind that I also had a very unusual situation which was not the norm, so not to scare you.

Cysts like all adenomas can be "symptomatic" or assymptomatic. It sounds like yours is symptomatic for sure. With cysts it is because of mass effect. Meaning that the tumor itself is pressing on things and could be causing hormone imbalances, optic nerve pressure, carotid artery pressure.

Because of where they tend to sit and push they can do a lot of damage. Mine was wedged right between the two lobes of my pituitary gland near the stalk.

The one thing that is a little different about cysts that I never read before I had surgery is that they can expand and shrink. Mine did and it caused a lot of annoying mass effect things to happen. Mine would also appear in different sizes on MRI's taken within months of each other. The other thing that is different about cysts is that they can undergo apoplexy (blow up).... you are given prolactinoma medications. Mine did.
Now appoplexy itself can sometimes be a real blessing if there is not a lot of damage because poof the cyst is gone. But usually it does not happen this way.

So, my recommendation if you want one is get yourself to the best  neuroendocrinologist that you can and ditto on a pituitary neurosurgeon for an eval.

If you have a Rathke's, craniopharyngioma or arachnoid cyst you owe it to yourself to get a proper evaluation, MRI, hormones tested etc.

I am happy to answer any questions.
Horselip

[horselip]

Hi Richard-
I had a Rathke's Cleft Cyst. But pretty much the information that is on the internet about non-secreting tumors is similar to the ifs, ands, and buts of cysts.There more common ones are Rathke's Cleft, Craniopharyngioma and Arachnoid cyst.
Having these names will help you to better search for quality information in on the web.

Your symptoms could 100% be due to your cyst and/or hormones that it is affecting.

I had all of your symptoms and more. PLEASE keep in mind that I also had a very unusual situation which was not the norm, so not to scare you.

Cysts like all adenomas can be "symptomatic" or assymptomatic. It sounds like yours is symptomatic for sure. With cysts it is because of mass effect. Meaning that the tumor itself is pressing on things and could be causing hormone imbalances, optic nerve pressure, carotid artery pressure.

Because of where they tend to sit and push they can do a lot of damage. Mine was wedged right between the two lobes of my pituitary gland near the stalk.

The one thing that is a little different about cysts that I never read before I had surgery is that they can expand and shrink. Mine did and it caused a lot of annoying mass effect things to happen. Mine would also appear in different sizes on MRI's taken within months of each other. The other thing that is different about cysts is that they can undergo apoplexy (blow up).... you are given prolactinoma medications. Mine did.
Now appoplexy itself can sometimes be a real blessing if there is not a lot of damage because poof the cyst is gone. But usually it does not happen this way.

So, my recommendation if you want one is get yourself to the best  neuroendocrinologist that you can and ditto on a pituitary neurosurgeon for an eval.

If you have a Rathke's, craniopharyngioma or arachnoid cyst you owe it to yourself to get a proper evaluation, MRI, hormones tested etc.

I am happy to answer any questions.
Horselip

[Richard1030]

Thanks for the response.  Unfortunately, since I received a total disability from the VA in 1998, I am at the mercy of the VA medical system for my health care.  I have had mixed results from them.  Here in Georgia, 2 years ago, I was diagnosed with kidney cancer and my care was quick, efficient and professional.  Within weeks they took out the kidney and left no cancer behind and I am still cancer free.

When my current symptoms developed we were at a campground in New Hampshire for the summer.  I had to go to the VA ER for treatment.  I was there 3 times, was diagnosed the first time with a medication change reaction, which I disputed to no avail.  My 2nd trip to the ER the diagnosis was that constipation due to meds was causing my problems and I was sent home with laxatives.  The 3rd time the doctor ordered a radioactive stress test which showed no negative results.

Back in GA, starting in September, I have been diagnosed with an enlarged prostate, sinus bradychardia, orthostatic hypotension, autonomic dysfunction, autonomic neuropathy in my feet and calves and now the pituitary cyst and possibly some brain abnormalities.  My problem is that no one seems to think these things are urgent, probably because they are chronic problems which I have had for months,rather than an acute, emerging problem that might be taken more serious.

Most of these diagnoses have been made at the ER here in Atlanta since my primary care clinic keeps advising me to go there since they have limited facilities at the clinic to treat my problems.  Everytime I go they put me on IV fluids, change my meds and diagnose something new.  The last time I was actually admitted for 3 nights and they could find nothing wrong and said I had some kind of autonomic dysfunction and to wait for my neurolgy appt. 2 and 1/2 weeks later.  I had that on Nov 2 and was told I need an MRI but the order was not put in by the doctor until I called, kind of complaining, a week and a half later.  Over all I have been having problems with scheduling and getting results.  I call, leave voice mail messages and no one calls back until I start raising cain.

That is where I stand now, waiting for a call from the neurologist, who is supposed to be in today.  I was told esterday the nurse would leave him a note, but I called again a few minutes ago to push a bit more.  This is frustrating as heck and I have been feeling horrible for months and I just seem to be getting worse.

Thanks for listening,

Richard

[horselip]

Hi Richard-
I wonder if this is all connected? Were you tested for Lymes? Keeping in mind that they often have to send out repeat samples to multiple labs.

If the cyst is high up meaning close to the hypothalamus I do think that it could be connected, but your hormones have to be checked to see if there is damage to the pituitary gland itself if not, it could be a fluke finding. But don't let them brush it off without checking your hormones first!!!!!

The VA I believe does have several pituitary teams. You might need to call and find out where they are are. They are probably at the larger centers.

Sorry that you feel so rotten.
Horselip

[rumpled]

Since you are in the VA, you can push to go to the NIH in Maryland where there are pituitary experts. I would do that. As for cyst vs tumor - the symptoms are pretty much the same. The pressure on the tumor can turn off the hormone and make you hypopituitary - so it just depends on the pituitary hormone(s) on where the symptoms shake out. I also have blood pressure and POTS issues.

Do you have copies of your tests? It is very frustrating.

[frustratedinsyracuse69]

my husband has the crandgioma(sp) type cyst on his peteutary gland....the surgeons went through his sinus to get to the cyst to drain it.  took over 4 hours to drain after the surgery he had a leak coming out of his sinus where they cut didn't seal so they had to keep him longer in the hospital and put a drainage tube in his back.  once it healed enough to release him two weeks later he leaked again so had to go in to repair the leak in his  sinus.  the issue with this cyst caused him to have some head aches and blurred vision in one eye.  since his surgeries his vision came back all most immediate but now 2 months later his vision is going back to the way it was before the surgery...he now is seeing eye specialist and radiation specialist they just did a repeat mri and feel that his cyst filled back up again.  we are so irritated that their next step didn't happen quick enough to keep this cyst from refilling....whats the next step.  He just went back to work and he can't deal with another surgery at this time. we are still paying off bills from the first surgeries and he's just not feeling good enough to undergo another 4 hours surgery.  i want to find someone who is a professional in dealing with this type of cyst.  he has fained twice since the surgeries in the past month and im not sure but they are saying they think is maybe a hormone issue.  we already know his testesterone level is very low from the cyst other levels so far show ok but we still need to see this new hormone specialist to see if anything else is effected.

[rumpled]

Maybe you need to get another opinion - and are you seeing a neuro-endo and are you being treated at a pituitary center? Has  your surgeon done more than 500 surgeries lifetime, and 50 in a year? Experience is a huge factor in the outcome of surgery.

It does not sound like he is being followed adequately for hormonal treatment following his surgery... Did you get copies of all his labwork - and his pathology and surgical reports? Sometimes anatomy is an issue with CSF leaks as well and it is not a surgical issue - it could have been pre-existing with a condition called psuedo-tumor cerebri (although they have since changed the name they call it something else now).

I agree you need to get another opinion - it would be odd only to have low T after surgery - usually thyroid and growth hormone and cortisol take a hit as well - sometimes for just a time, sometimes forever so it pays to keep an eye on these things.

There is some information in the lower right (really low) that has websites that may help you. I know Horsey will help you too! It may help too to start a new thread as well!

[horselip]

Hiya-
Sounds kind of like my experience :( sorry to hear.

Is your husband's cyst large? I ask because you are consulting radiologists.

With a cyst it is important that the surgeon actually removes a good part of the outer layer or it can refill as you've discovered.

It really think that your husband should consult with a pituitary surgeon and explore the idea of having this re-done. Sorry, I know that this is not the answer that you want to hear. But I can't think of any other way that the cyst is going to stop filling up.

I also have been battling a csf leak. I've now had two repairs and we are looking at possible third one or shunt placement.

And then the hormones need to be assessed. Rumpled addressed that in her response.

I rec that you all get in touch with a pituitary center. UCLA, UCSF, Mass General, Swedish hospital etc. There is info is in the health pages.

Sorry that this is happening!
Horselip