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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mineolap2 | @mineolap2 | Mar 8, 2017

I also rec'd this diagnosis thru an MRI this month. The MRI was a follow up to determine if a colloid cyst had grown and was causing my headaches and neck pain. The cyst was previously found by cat scan. Like others here I was also told it was nothing of concern. Interestingly the cyst doesn't even show on the MRI. I am already being treated by a neurologist for essential tremor. Plan to research further and discuss with him. FYI I am female and have had weight problem at times in my life but certainly not obese.

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4 replies
joycem | @joycem | Mar 11, 2017
In reply to @frankie999 "Newly diagnosed with empty sella. My doctor said the MRI showed it was in the normal..." + (show)
@frankie999

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.

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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?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 20, 2017
In reply to @mineolap2 "I also rec'd this diagnosis thru an MRI this month. The MRI was a follow up..." + (show)
@mineolap2

I also rec'd this diagnosis thru an MRI this month. The MRI was a follow up to determine if a colloid cyst had grown and was causing my headaches and neck pain. The cyst was previously found by cat scan. Like others here I was also told it was nothing of concern. Interestingly the cyst doesn't even show on the MRI. I am already being treated by a neurologist for essential tremor. Plan to research further and discuss with him. FYI I am female and have had weight problem at times in my life but certainly not obese.

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Hi @mineolap2, welcome to Connect.
What are the next steps for you to get relief from the headaches and neck pain?

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Kari Ulrich, Alumna Mentor | @kariulrich | Mar 27, 2017
In reply to @sandhya60 "I was told I had an Empty Sella when I went through a Neurological workup for..." + (show)
@sandhya60

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.

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Frustrating to say the least!

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Kari Ulrich, Alumna Mentor | @kariulrich | Mar 27, 2017

Wondering if anyone has daily headaches? What have you done to manage headaches?

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jes078 | @jes078 | Apr 7, 2017

I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!

P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.

REPLY
13 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 7, 2017
In reply to @jes078 "I received the empty sella dx while getting a workup for intractable headache. After several years..." + (show)
@jes078

I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!

P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.

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Welcome to Connect, @jes078.
I'd like to introduce you to @sandhya60 @kariulrich @cindybrown @rkyobo and @mineolap2, who are also talking about empty sella here.
@joycem also mentions having methylene tetrahydrofolate reductase (MTHFR) mutation. There's an older discussion talking about MTHFR here that you may be interested in reading. http://mayocl.in/2nlSnbE

Good luck with the testing today. I hope you get to the bottom of finding a cause and thereby relief for the intractable headache (IH). Do they suspect clotting or a dural arteriovenous fistula (DAVF)?

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Apr 7, 2017
In reply to @jes078 "I received the empty sella dx while getting a workup for intractable headache. After several years..." + (show)
@jes078

I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!

P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.

Jump to this post

Hi @jes078, I was diagnosed with a pituitary adenoma, and I also get headaches a lot. That have not been able to correlate my headaches with the adenoma. I have been diagnosed with cluster headaches, the most painful headaches... I cannot describe. I do have at home oxygen and that has made a difference for me. I believe I have been checked for MTHFR... so many work ups it is hard to remember!! Just curious if you have been checked for Ehlers-Danlos Syndrome?

REPLY
jes078 | @jes078 | Apr 7, 2017
In reply to @jes078 "I received the empty sella dx while getting a workup for intractable headache. After several years..." + (show)
@jes078

I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!

P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.

Jump to this post

Thanks @colleenyoung 🙂 The Intractable Headache is caused by Intracranial Hypertension (IH). They suspect the cause of the Intracramial Hypertension MAY be due to a clot (MTHFR) or due to a DAVF. Otherwise, it could just be idiopathic. The MRA/MRV went well today. I also got an emergency appointment with the opthamologist due to a sudden & severe decline in vision. Unfortunately, there's nothing more that can be done right now, aside from the follow up with the neurologist first thing Monday morning. Have a wonderful weekend!

REPLY
jes078 | @jes078 | Apr 7, 2017
In reply to @jes078 "I received the empty sella dx while getting a workup for intractable headache. After several years..." + (show)
@jes078

I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!

P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.

Jump to this post

Hi @kariulrich, yikes and yikes. Neither of those sound the least bit fun. I get high pressure headaches from the intracranial hypertension and migraines. The combination are excruciating. I can't even begin to fathom worse. I do recall seeing a show where a guy that gets cluster headaches treats them with psilocybin mushrooms. He takes them once a month and hasn't had one in years. Please don't read that as as a suggestion or even approval. It's just information I happened to recall. I haven't been tested for ED... may I ask what started you on that thought?

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