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

Liked by sandhya60

@sharenka have you been to an opthalmologist to check your eyes for papilledema? It’s swelling of the optic nerve. What you described in your post sounds a lot like Intracranial Hypertension. As for the CSF leaks, it is possible to leak out if your eyes , nose and ears, although very rare. I would recommend seeing a new Neurologist or neurosurgeon to check into that and ask to be tested for IIH.

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@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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I was diagnosed about 4 years ago with partial ess. I also presented with hypopituitsrism that effected my prolactin levels, cortisol levels, TSH levels, estrogen, and testosterone levels. My blood pressure dropped to 70/30 and I would lose consciousness. My hair got thin and brittle, I had brain fog, I lost vision in my eyes except for the center, I had severe headaches that squeezed the base of my skull and neck. I lost feeling in my face and down both sides of my body. I couldn’t hear except for loud ringing. I have severe right quadrant pain. I have gained 35 lbs in less than a year and have severe edema on legs, abdomen and face. Had an uncle that had an adenoma that was the size of a grapefruit. I have an aunt that had a acoustic neurons. I had a grandmother who had an adenoma in her temporal lobe who died of colon cancer. I was wondering if these are congenital and if there is a screening test to see if they are hereditary.

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@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.

Jump to this post

@hollyheinzig Hi, Holly. Sounds like a mess, to me. Sandy and the others who wrote that they were told it was of no consequence seem to have been given a downer cow. I do not think I have ESS, but I do have Primary Systemic Hereditary Lite Chain TTRwt Amyloidosis, with Cardiac involvement.Like ESS, it includes misfolded protein issues. Several doctors have told me “It is nothing to worry about. You will not have to worry about it, because you will die of some form of cancer, probably prostate, before the AL is any bother.” So here is the point. I have started a little book about my own medical records and issues of the past 77 years. By limiting the piece to the clinical, hospital and family records which can be located, it is easier to decipher. It is still lengthy, but the practices has been very helpful. I have organized it so that there are sections for kidney, cardiac, lungs, liver, pancreas, genito-urinary, etc. It helps me wrap my mind around the thing in ways I could not have grasped without the practice. So if you and others are looking for ways to deal with this stuff, whether ESS, or Amyloidosis, or whatever, you might want to take a look at it at https://bit.Ly/1w7j4j8 “Amyloidosis Series 14.pdf” to see if you can use some of these formats. It is not easy, but it does help me feel that I am making a little contribution even while arguing with something that will probably kill me eventually. And I promise, I am not selling anything but a little hope and understanding.

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@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.

Jump to this post

Welcome to Connect, Holly.
You might be interested in watching this archived webinar about Congenital Anomalies of Brain and Skull https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-congenital-anomalies-of-spine-brain-skull/

Have you spoken with your doctor or neurologist about your family history and possible links?

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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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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?

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@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/

Liked by dazza333

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@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?

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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?

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@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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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.

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@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.

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@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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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.

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@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/

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@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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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

Liked by dazza333

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@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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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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