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caras
@caras

Posts: 2
Joined: Aug 29, 2012

Empty Sella Syndrome

Posted by @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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MathewPhilips
@mathewphilips

Posts: 9
Joined: Jul 09, 2012
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
@caras

Posts: 2
Joined: Aug 29, 2012
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
@mouser

Posts: 55
Joined: Sep 09, 2012
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
@mouser

Posts: 55
Joined: Sep 09, 2012
Posted by @mouser, Sep 9, 2012

Dr. Nagib is the neurosurgeon I recommend


NickRyder
@nickryder

Posts: 3
Joined: Sep 11, 2012
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.


nodakchik
@nodakchik

Posts: 1
Joined: May 22, 2013
Posted by @nodakchik, 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
@frankie999

Posts: 1
Joined: Aug 28, 2015
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.


joycem
@joycem

Posts: 1
Joined: Mar 11, 2017
Posted by @joycem, Sat, Mar 11 2:57pm

Your description sounds a lot like what I have going on except my prolactin and cortisol were not tested. I have Hashimotos hypothyroid amid a lot of other syndromes incl fibromyalgia, IBS, RLS, GERD, etc.
I recently had an MRI because of my Neuropathy. It showed empty Sella. I was told empty Sella is of no consequence.
My blood labs showed a high calcium level. Apparently this can denote hyperparathyroidism. A (usually) non cancerous growth on one or more parathyroid (4) organ. I have most of the symptoms including a lot of hair loss over a number of years. It also includes shortness of breath, neausea, palpitations, GERD (or acid reflux), osteoporosis,etc.
BUT my doctor has decided I have FHH which is a congenital form of hyperparathyroid. She is ignoring my other symptoms. I read info from a Parathyroidism group that said FHH is so rare one in several thousand will actually have FHH and I should see another doctor. They even started photographing the tumor for the patient to show their doctor because the form with the tumor is life shortening. Causing several problems i.e. Heart attacks or strokes. So I guess I will be going to another doctor soon.

Can empty Sella have anything to do with a pituitary problem? I know they are not next to each other but I also have MTHFR. And I cannot have food w soy or canola. They give me horrible headaches depending on how much I have eaten (which I now avoid). I mistakenly ate two meals w the oils one day and was blinded by the headaches for 4 days and had cognitive problems for several days after that. It Also causes a tender spot on the right side of my head above my right ear.
It took a lot of my own research and a day without the headaches to figure out what I did or didn’t do to not get the headache that day. Doctors kept telling me nothing was wrong.
Also a flattened pituitary gland must be affected in some way. You would think. The first person to leave a message here said something about eyesight which my research did not find. Is this something else I should be aware of?


sandhya60
@sandhya60

Posts: 7
Joined: Jan 13, 2017
Posted by @sandhya60, Thu, Jan 12 11:05pm

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.


Colleen Young, Connect Director
@colleenyoung

Posts: 3685
Joined: Jul 23, 2014
Posted by @colleenyoung, Fri, Jan 13 1:51pm

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
@sandhya60

Posts: 7
Joined: Jan 13, 2017
Posted by @sandhya60, Thu, Jan 26 7:41pm

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.


Kari Ulrich, Volunteer Mentor
@kariulrich

Posts: 285
Joined: Jul 15, 2011
Posted by @kariulrich, Mon, Mar 27 10:25am

Frustrating to say the least!


sandhya60
@sandhya60

Posts: 7
Joined: Jan 13, 2017
Posted by @sandhya60, Thu, Jan 26 7:42pm

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


sandhya60
@sandhya60

Posts: 7
Joined: Jan 13, 2017
Posted by @sandhya60, Thu, Jan 26 8:31pm

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.


Colleen Young, Connect Director
@colleenyoung

Posts: 3685
Joined: Jul 23, 2014
Posted by @colleenyoung, Thu, Jan 26 8:59pm

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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