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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schaefer45 | @schaefer45 | Mar 2, 2018

Recently had an MRI after unexplained hemionapsia (visual field defect). The MRI revealed ESS. Has anyone else experienced vision problems due to fluid invasion and pressure on the optical chiasm?

REPLY
4 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 3, 2018
In reply to @dazza333 "I was diagnosed with secondary empty sella syndrome in 2017, it is probably the result of..." + (show)
@dazza333

I was diagnosed with secondary empty sella syndrome in 2017, it is probably the result of a head injury in 2015, after the head injury, about 2-3 months I started getting extremely fatigued, memory problems, lost words, no libido, ED, moody, irritable. I saw my doctor for a bad chest, he looked at me and said he would take some blood as I looked "knackered", I was not producing LH nor FSH and as such no testosterone, he then referred me to an endocrinologist who following an MRI started me on IM HRT which is struggling to get my numbers up but I'm told to be patient. The MRI showed that the anterior portion of my pituitary gland had been torn from the stem. My endocrinologist and CNS say that my symptoms are nothing to do with secondary empty sella, however, all of the evidence I read from other ESS sufferers is almost identical symptoms. I think the Drs are really not aware of the damage this syndrome causes. I have not felt like me since before my head injury, I think that guy has gone. I'm due a full head MRI this week to check for further brain injury as the first MRI was just pituitary specific. I've had loads of support from the pituitary foundation in UK and Headway Brain Injury Foundation.

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@dazza333 any update from the full head MRI? Look forward to hearing more about what you find out.
I thought you might also be interested in joining this discussion on Connect:
- Adult Life after a Traumatic Brain Injury (TBI) https://connect.mayoclinic.org/discussion/adult-life-after-a-tbi/

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 3, 2018
In reply to @schaefer45 "Recently had an MRI after unexplained hemionapsia (visual field defect). The MRI revealed ESS. Has anyone..." + (show)
@schaefer45

Recently had an MRI after unexplained hemionapsia (visual field defect). The MRI revealed ESS. Has anyone else experienced vision problems due to fluid invasion and pressure on the optical chiasm?

Jump to this post

Welcome to Connect, @schaefer45
I'm tagging fellow members @sharenka @aprillelain and @rmueller628, who have all mentioned vision problems related to empty sella syndrome (ESS).

Schaefer, are your vision issues reversible? Can they drain the fluid and relieve the pressure on the optical chiasm?

REPLY
dazza333 | @dazza333 | Mar 3, 2018
In reply to @dazza333 "I was diagnosed with secondary empty sella syndrome in 2017, it is probably the result of..." + (show)
@dazza333

I was diagnosed with secondary empty sella syndrome in 2017, it is probably the result of a head injury in 2015, after the head injury, about 2-3 months I started getting extremely fatigued, memory problems, lost words, no libido, ED, moody, irritable. I saw my doctor for a bad chest, he looked at me and said he would take some blood as I looked "knackered", I was not producing LH nor FSH and as such no testosterone, he then referred me to an endocrinologist who following an MRI started me on IM HRT which is struggling to get my numbers up but I'm told to be patient. The MRI showed that the anterior portion of my pituitary gland had been torn from the stem. My endocrinologist and CNS say that my symptoms are nothing to do with secondary empty sella, however, all of the evidence I read from other ESS sufferers is almost identical symptoms. I think the Drs are really not aware of the damage this syndrome causes. I have not felt like me since before my head injury, I think that guy has gone. I'm due a full head MRI this week to check for further brain injury as the first MRI was just pituitary specific. I've had loads of support from the pituitary foundation in UK and Headway Brain Injury Foundation.

Jump to this post

Hiya, I'll be getting results from MRI on Friday next week so will keep you posted and I'll look in on Traumatic Brain Injury thread. Thank you.

REPLY
aprillelain | @aprillelain | Mar 5, 2018
In reply to @schaefer45 "Recently had an MRI after unexplained hemionapsia (visual field defect). The MRI revealed ESS. Has anyone..." + (show)
@schaefer45

Recently had an MRI after unexplained hemionapsia (visual field defect). The MRI revealed ESS. Has anyone else experienced vision problems due to fluid invasion and pressure on the optical chiasm?

Jump to this post

Yes, mine was caused by excess Cerebral Spinal Fluid production. I was diagnosed with Idiopathic Intracranial Hypertension and have lost vision permanently due to it.

REPLY
dazza333 | @dazza333 | Mar 15, 2018
In reply to @dazza333 "I was diagnosed with secondary empty sella syndrome in 2017, it is probably the result of..." + (show)
@dazza333

I was diagnosed with secondary empty sella syndrome in 2017, it is probably the result of a head injury in 2015, after the head injury, about 2-3 months I started getting extremely fatigued, memory problems, lost words, no libido, ED, moody, irritable. I saw my doctor for a bad chest, he looked at me and said he would take some blood as I looked "knackered", I was not producing LH nor FSH and as such no testosterone, he then referred me to an endocrinologist who following an MRI started me on IM HRT which is struggling to get my numbers up but I'm told to be patient. The MRI showed that the anterior portion of my pituitary gland had been torn from the stem. My endocrinologist and CNS say that my symptoms are nothing to do with secondary empty sella, however, all of the evidence I read from other ESS sufferers is almost identical symptoms. I think the Drs are really not aware of the damage this syndrome causes. I have not felt like me since before my head injury, I think that guy has gone. I'm due a full head MRI this week to check for further brain injury as the first MRI was just pituitary specific. I've had loads of support from the pituitary foundation in UK and Headway Brain Injury Foundation.

Jump to this post

My original MRI revealed Secondary Empty Sella Syndrome my second MRI has revealed frontal and occipital lobe Small Vessel Disease "probably as a result of more than one previous head injury" according to CNS, apart from 2015 head injury I was a rugby player having had multiple concussions so this new information makes sense.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 15, 2018
In reply to @schaefer45 "Recently had an MRI after unexplained hemionapsia (visual field defect). The MRI revealed ESS. Has anyone..." + (show)
@schaefer45

Recently had an MRI after unexplained hemionapsia (visual field defect). The MRI revealed ESS. Has anyone else experienced vision problems due to fluid invasion and pressure on the optical chiasm?

Jump to this post

Thanks for responding to Schaefer, April. Do you use a web reader to participate on Connect? Does the website read alright?

We haven't had much conversation on the Idiopathic intracranial hypertension thread lately. https://connect.mayoclinic.org/discussion/idiopathic-intracranial-hypertension/

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 15, 2018
In reply to @dazza333 "I was diagnosed with secondary empty sella syndrome in 2017, it is probably the result of..." + (show)
@dazza333

I was diagnosed with secondary empty sella syndrome in 2017, it is probably the result of a head injury in 2015, after the head injury, about 2-3 months I started getting extremely fatigued, memory problems, lost words, no libido, ED, moody, irritable. I saw my doctor for a bad chest, he looked at me and said he would take some blood as I looked "knackered", I was not producing LH nor FSH and as such no testosterone, he then referred me to an endocrinologist who following an MRI started me on IM HRT which is struggling to get my numbers up but I'm told to be patient. The MRI showed that the anterior portion of my pituitary gland had been torn from the stem. My endocrinologist and CNS say that my symptoms are nothing to do with secondary empty sella, however, all of the evidence I read from other ESS sufferers is almost identical symptoms. I think the Drs are really not aware of the damage this syndrome causes. I have not felt like me since before my head injury, I think that guy has gone. I'm due a full head MRI this week to check for further brain injury as the first MRI was just pituitary specific. I've had loads of support from the pituitary foundation in UK and Headway Brain Injury Foundation.

Jump to this post

Hi Dazza, I encourage you take part in the brain injury discussion as mentioned above.
You may also be interested in the small vessel disease discussions in the Stroke & Cerebrovascular Diseases group https://connect.mayoclinic.org/group/cerebrovascular-diseases/

For example:
Small vessel Ischemic disease
Small vessel ischemic disease plus epilepsy and migraines
Small Vessel Disease in the Brain & Cavernous Malformation

REPLY
aprillelain | @aprillelain | Mar 17, 2018
In reply to @schaefer45 "Recently had an MRI after unexplained hemionapsia (visual field defect). The MRI revealed ESS. Has anyone..." + (show)
@schaefer45

Recently had an MRI after unexplained hemionapsia (visual field defect). The MRI revealed ESS. Has anyone else experienced vision problems due to fluid invasion and pressure on the optical chiasm?

Jump to this post

I just get notified thru my email and reply thru there. I haven't gone to the website in a long time due to being active in other groups on social media. But I try to check in when I see someone added a comment or has replied here.

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ShaRenKa | @sharenka | Mar 17, 2018

yes, I was diagnosed 19 yrs ago and have absolutely nothing left of my pituitary gland. MY main problem is...my face starting around 3 pm starts filling up with fluid so bad I have no neck..my chin is so swollen that it lays on my chest, plus my eyes so bad I have tiny slits to see thru and my vision I take it is terrible due to the pressure. Im fuzzy headed to. Was wondering does anyone else have this with their ESS? Thank you..Linda

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