1. < Brain & Nervous System

Empty Sella Syndrome

Posted by caras @caras, Aug 29, 2012

Hello, Newly diagnosed with this syndrome. Basically pitatuary gland is pinched and/or not able to be found on MRI and now affecting my vision and my ACTH and prolactin levels are wacky. MRI found a csyst or possible CSF leakage. Anyone experience this? I am just beginnin this journey and looking for any information at all.
Thank you,
Cara in ND

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sandhya60 | @sandhya60 | Jan 26, 2017

I have invited another person to this forum and I hope she makes it here, She too...same stuff...

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sandhya60 | @sandhya60 | Jan 26, 2017

I am finding this was the only location on the net that actually had a few folks commenting on this little known condition. I would like to see more time devoted from those who have been diagnosed so we can all put pieces together of this puzzle to know if/what/how and when this is actually a health issue. So much is not known. We/I all of us should learn more.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 26, 2017
In reply to @sandhya60 "I am finding this was the only location on the net that actually had a few..." + (show)
@sandhya60

I am finding this was the only location on the net that actually had a few folks commenting on this little known condition. I would like to see more time devoted from those who have been diagnosed so we can all put pieces together of this puzzle to know if/what/how and when this is actually a health issue. So much is not known. We/I all of us should learn more.

Jump to this post

Hi Sandy,
Indeed there was a burgeoning discussion about Empty Stella Syndrome when Connect first started in 2012. I'm still hopeful that some of the past members will return to share with you. In the meantime, let's keep the conversation going so that it appears when the next person searches in Google for a forum about Empty Stella Syndrome. I hope your friend will join Connect.

I totally agree with you that by having this discussion people with the condition will learn more and pieces of the puzzle might just start to form a picture. Can you get us started? What does Empty Stella Syndrome look like for you? Can you describe for me the symptoms you have that are associated with the condition?

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cindybrown | @cindybrown | Feb 10, 2017

I just had an MRI done due at worsening headaches and blurry vision. The MRI report showed a partially empty sella. My primary care physician just called and said my results were normal. I asked about the sella issue and he said it doesn't usually cause headaches, but he can refer me to an endocrinologist to have my hormone levels checked. I told him I want to do that. We'll see what comes of it or if all of my issues are just due to menopause.

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4 replies
sandhya60 | @sandhya60 | Feb 10, 2017
In reply to @cindybrown "I just had an MRI done due at worsening headaches and blurry vision. The MRI report..." + (show)
@cindybrown

I just had an MRI done due at worsening headaches and blurry vision. The MRI report showed a partially empty sella. My primary care physician just called and said my results were normal. I asked about the sella issue and he said it doesn't usually cause headaches, but he can refer me to an endocrinologist to have my hormone levels checked. I told him I want to do that. We'll see what comes of it or if all of my issues are just due to menopause.

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yeah, I really think there is not enough consensus on this whole thing...some say .."Headaches yeah of course" others say no, others say "No bearing on you and your health its just coincidental" etc etc...there seems to be a different story from all fronts. Its either Coincidental or Incidental....and I don't think there is one deliberate answer for anyone. If the hormones are all normal, then they say "Its not a problem" etc etc.....at or during or because I finally wanted an answer to most likely menopause stuff, I had memory problems, body aches etc etc...and of course other issues ....and it was diagnosed on the routine Neurological work up MRI. Was told it was not an issue, yet of course was also told "Oh you have artifacts showing migraines" uh yea, I have bad headaches but never complained to the extent to go after diagnoses...but "lets get back to this empty sella thing" uh yeah, no problems there, not an issue...." I think all of us want to know more about this "orphan" syndrome and why so many who have it seem to have the same symptom patterns..We all need to "get our heads together" so to speak right?

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rkyobo | @rkyobo | Mar 5, 2017

My sister-in-law was just given this diagnosis from an MRI. Her symptoms are: headache, nausea, eye pain, racing pulse, and high bp. She will be seeing an endocrinologist tomorrow, so hopefully she will get some answers about what treatment they will give her.

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2 replies
Jamie Olson | @jamienolson | Mar 5, 2017
In reply to @cindybrown "I just had an MRI done due at worsening headaches and blurry vision. The MRI report..." + (show)
@cindybrown

I just had an MRI done due at worsening headaches and blurry vision. The MRI report showed a partially empty sella. My primary care physician just called and said my results were normal. I asked about the sella issue and he said it doesn't usually cause headaches, but he can refer me to an endocrinologist to have my hormone levels checked. I told him I want to do that. We'll see what comes of it or if all of my issues are just due to menopause.

Jump to this post

@cindybrown, were you able to meet with an Endocrinologist? Let us know how are you are doing.

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Jamie Olson | @jamienolson | Mar 5, 2017
In reply to @rkyobo "My sister-in-law was just given this diagnosis from an MRI. Her symptoms are: headache, nausea, eye..." + (show)
@rkyobo

My sister-in-law was just given this diagnosis from an MRI. Her symptoms are: headache, nausea, eye pain, racing pulse, and high bp. She will be seeing an endocrinologist tomorrow, so hopefully she will get some answers about what treatment they will give her.

Jump to this post

Hi @rkyobo! Welcome to Mayo Clinic Connect. Would you do us a favor and come back to let the group know how your sister-in-law's appointment with the Endocrinologist goes? We would appreciate it.

Thank you!

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rkyobo | @rkyobo | Mar 6, 2017
In reply to @rkyobo "My sister-in-law was just given this diagnosis from an MRI. Her symptoms are: headache, nausea, eye..." + (show)
@rkyobo

My sister-in-law was just given this diagnosis from an MRI. Her symptoms are: headache, nausea, eye pain, racing pulse, and high bp. She will be seeing an endocrinologist tomorrow, so hopefully she will get some answers about what treatment they will give her.

Jump to this post

I will - as soon as I hear from her.rkyobo

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cindybrown | @cindybrown | Mar 7, 2017
In reply to @cindybrown "I just had an MRI done due at worsening headaches and blurry vision. The MRI report..." + (show)
@cindybrown

I just had an MRI done due at worsening headaches and blurry vision. The MRI report showed a partially empty sella. My primary care physician just called and said my results were normal. I asked about the sella issue and he said it doesn't usually cause headaches, but he can refer me to an endocrinologist to have my hormone levels checked. I told him I want to do that. We'll see what comes of it or if all of my issues are just due to menopause.

Jump to this post

@jamienolson, Yes. Thank you for checking. I met with him this morning. He ordered lab tests to check my cortisol and prolactin levels. I will have these done in the morning. He showed me the mri image of my brain. The space in the sella is black with a thin sliver of white which is my pituitary. Still having headaches and blurry vision.

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