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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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

The empty sella, and MTHFR made me think about EDS, as both have been talked about in EDS communities. I do not know a lot about MTHFR, but found it interesting. So many illness over lap. You mentioned a host of other related issues... that peaked my curiosity.

REPLY
mineolap2 | @mineolap2 | Apr 10, 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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Due to vision issues my opthomologist ordered several vision tests. Heard today the results were abnormal and I'm being referred to a neuro opthomologist. Findings said "suspicious for process affecting the optic chasm". Not sure what it means but hope to get appt soon.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 11, 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.

Jump to this post

mineolap2 - While it's never great to hear that test results are abnormal, at least you have something to investigate and hopefully this will lead to solutions. Best of luck and keep us posted.

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jes078 | @jes078 | Apr 11, 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

@kariulrich, Interesting. I wasn't aware of the correlation. I will definitely take a look! Thanks for the puzzle piece!

REPLY
jes078 | @jes078 | Apr 11, 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

So the results are in, and not quite what anyone was expecting. The MRA was "normal", which means blood flow is getting to my brain okay. However, the MRV indicated "The nondominant
left transverse and sigmoid sinus demonstrate multifocal stenosis of
the sigmoid sinus laterally." Which means blood/CSF flow away from the brain are obstructed. And "There is a partially empty sella." Neuro indicated IH could cause the stenosis, or stenosis could cause the IH. Or any number of other things. Either way, a therapeutic lumbar puncture has been ordered to determine whether or not a shunt will be effective. She also added another 20mg lasix and ordered Botox injections. Follow up in 3 weeks. Hard to say what's next.

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Apr 12, 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

Thinking of you! @jes078. One moment at a time! How are you feeling about all of this?

REPLY
jes078 | @jes078 | Apr 12, 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 @kariulrich! My feelings are a little on the fence at the moment. One the one hand, I'm elated to finally be getting some answers as to what's causing quite a few of my most concerning symptoms. On the other hand, I'm quite concerned that the medical approach up to this point has failed. At this point, we're grasping at straws. If it doesn't start working quickly, the only other option is to go along with the shunt placement. Invasive brain surgery is not my idea of a good time. 🙁 How are you fairing with your headaches? Other than oxygen, have you found anything that lends relief?

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Apr 13, 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

I have not found anything that really helps with my headaches. Usually sleep. I will be thinking of you! Invasive brain surgery not my idea of fun either!

REPLY
Blessedmama | @rmueller628 | Aug 8, 2017

Just received my MRI stating I have a partially empty sella. I also have the chronic headaches, vision issues and pituitary adenomas. I'm wondering if this is all related.

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aprillelain | @aprillelain | Aug 10, 2017

Hello everyone. I was diagnosed with Empty Sella Syndrome on several MRI's over the past 5 years. It all started with me getting headaches that felt like my head was being crushed in a vice and not being able to see as well. I was also seeing black spots floating around in my vision all the time, so I made an appointment with my eye doctor. He noticed my optic nerves were swollen (papilledema) and sent me for an MRI to see if I had a brain tumor and to an eye specialist, a neuro-opthamologist. When the MRI showed the ESS, he ordered a lumbar puncture (spinal tap). My opening pressure was 36, normal is 8-18. It was then that I was diagnosed with Idiopathic Intracranial Hypertension, otherwise previously called Pseudo Tumor Cerebri. They started me on Diamox to decrease the production of the Cerebral Spinal Fluid (CSF). For over 4 years I had complications, a lot of different meds, several long hospital stays and surgeries, and saw many different doctors. Finally in January of this year, after over 35+ spinal taps, so many MRI's, MRA, MRV and CT Scans, a specialist at the new hospital I was transferred to, took one look at my MRA and asked why no one had done anything about the stenosis in my left transverse sinus. I had an emergency angiogram with angioplasty done that day. 10 days later I had 2 stents placed in my left side transverse sinus. We also learned that my right one is congenitally closed and unable to be opened or stented. Since then, my eye sight has stabilized (I had permanently lost my peripheral vision prior to stenting), my headaches have lessend and my ESS is improved to partial ESS since the CSF is not so high that it is squishing my pituitary glad flat.
While I realize I wrote almost a book here, there are many of us with the rare brain disorder of Idiopathic Intracranial Hypertension (IIH) / Pseudo Tumor Cerebri (PTC) that have ESS. There are many groups on the popular social media sites that you can join or just read the public comments in open groups.
I'm not suggesting any of you have IIH/PTC, but that maybe some of us IHer's can help you understand what is happening and give you suggestions on what to ask your doctors to look or test for.

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