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caras

Empty Sella Syndrome

Posted by @caras in Brain & Nervous System, 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

sandhya60 likes this
mathewphilips

Posted by @mathewphilips, Aug 30, 2012

Hello,
Sorry to hear about your condition. But luckily the enodcrine ( hormonal ) problems can be treated successfully by drugs. Hey what about your vision ? Is it already affected? I wonder how the empty sella will affect the vision..
Good luck.

caras

Posted by @caras, Aug 30, 2012

Thanksfor your reply! Yes, my vision has been affectred so I wonder if the cyst will nn to be removed or how theytake care of that problem.

mouser

Posted by @mouser, Sep 9, 2012

If you can swing it, I recommend coming to The Twin Cities in Minnesota to have your surgery. I work at Abbott Northwestern Hospital on neuroscience. We deal with situations just like yours all the time and we are very experienced.

mouser

Posted by @mouser, Sep 9, 2012

Dr. Nagib is the neurosurgeon I recommend

nickryder

Posted by @nickryder, Sep 11, 2012

A few years ago I was diagnosed with empty cella syndrome, they can't see my pituitary . Nobody seemed overly concerned, I inject myself with 2 cc's of testosterone every two weeks. I take a myriad of medications. 30 pills per day. I haven't been the same since I was diagnosed. A lot of the doctors had never heard of empty syndrome. It does put you through some changes.

Posted by Anonymous-c1a06bac, May 22, 2013

I am currently being worked up for terrible headaches. Had an MRI of my brain and aside from finding out I probably had a stroke, the report states, "incidental partially empty sella" is found. Having no idea of what this was, I started researching it. I have so many of the symptoms. Have asked the Neurologist about it but was told that headaches are not a component of this disorder. Everything I've read states headaches are experienced by 90% of those with this condition. We are still working on a cause for my headaches but wondering what symptoms others are having with the empty sella...?? I don't think I've had my prolactin level checked (but my daughter recently found out she has a pituitary prolatinoma)- so then I also wonder if there's a heriditary component to any of this. ??? Any info is appreciated!!

frankie999

Posted by @frankie999, Aug 27, 2015

Newly diagnosed with empty sella. My doctor said the MRI showed it was in the normal range, anybody know what this means? I suffer from headaches, nauseau, heart palpitations and shortness of breath. My prolactin levels are way up, so is cortisol. I am also hypothyroid. She said there was no adenoma.

Any info really appreciated.

sandhya60

Posted by @sandhya60, Thu, Jan 12 at 11:05pm CST

I was told I had an Empty Sella when I went through a Neurological workup for problems I was having during the change of life. Memory issues etc. As part of the whole work up a Brain MRI was done. Then I was told this was what was found. My journey began, I was told what it was incidental and nothing to worry about and it wasnt causing my problems. Then I read through all the net and found absolutely nothing except other patients who were told about their incidental findings as well. I read that allot of us patients had similar issues, and either the Drs. told them YES there is the explanation or NO it is not responsible for their problems. I started to realize at that point, MDs didnt know anything about this disorder and basically everyone gets a different story. Either, it should cause no issues, or yes it does. Opinions all over the place.
The pituitary gets flat because of either you are over weight, you are a woman, have high blood pressure, have high cranial pressure, you were born with it...etc etc..the list goes on.

I periodically remember that I have this and then my curiosity gets energized again.
So...I see the last entry here was 2015, well, now its 2017, so we shall see if this orphan disorder has any more patients asking questions, and if we get any more answers.

colleenyoung

Posted by @colleenyoung, Fri, Jan 13 at 1:51pm CST

Hi @sandhya60, welcome to Connect. I'm glad that you re-ignited this discussion on Empty Stella. I hope by doing so that @frankie999 @nickryder @mouser @caras @mathewphilips may return to connect with you.

Here's some background info on Empty Stella Syndrome from NORD for anyone unfamiliar with the condition https://rarediseases.org/rare-diseases/empty-sella-syndrome/

Sandy, what symptoms or issues do you have that may be attributed to ESS? Headaches, vision issues, other?

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sandhya60

Posted by @sandhya60, Thu, Jan 26 at 7:41pm CST

Well, kinda weird, since the Neurologist who found it in my radiological exam essentially said its nothing to worry about...yet, I have started to weed out information the last 6 years and have found others with all the things that brought me into the whole thing with the neurological exam and the symptoms are all mirrored in complaints. So I guess it boils down to this....Do we associate our symptoms with this or do we believe the MD's who say, "no nothing to worry about..just treat your symptoms as if you were just anyone else with headaches, fatigue, menopause etc" You tell me.

sandhya60

Posted by @sandhya60, Thu, Jan 26 at 7:42pm CST

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

sandhya60

Posted by @sandhya60, Thu, Jan 26 at 8:31pm CST

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.

colleenyoung

Posted by @colleenyoung, Thu, Jan 26 at 8:59pm CST

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?

cindybrown

Posted by @cindybrown, Fri, Feb 10 at 10:47am CST

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.

sandhya60

Posted by @sandhya60, Fri, Feb 10 at 3:10pm CST

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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