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, amomma4

So I do not know if I am posting in the right spot, but hopefully this works.
I am a 32 year old female. Considered obese. I had temporarily lost vision in my left eye and told my primary physician about it during my yearly check up in Feb. She ordered an MRI and I was found to have a partial empty sella. I was scheduled with neurology in April and endocrinology (today). In the interim I had my yearly eye exam with my optometrist and explained to her what symptoms I had along with failing my vision screening in my left eye she checked the pressure on my optic nerve. Low and behold I had pressure on my left worse than my right. I was to see Neurology in 3 days from that visit and she encouraged me to keep the appt. She had diagnosed me with papilledema. And I went to Neurology. Neurology did a brief exam and immediately sent me to the ER. He wanted to have me admitted for a spinal tap and full work up. My opening pressure for my spinal was 32. They removed 17mls of fluid and after 2 and a half days i was sent home. I was placed on Diamox and told repeatedly that i had pseudotumor cerebri or intracranial hypertension. I was also told by both the hospital neurologists and the one i had seen in the office that i needed to lose weight. That age weight and sex had a major rule in my diagnosis. The follow up was 2 weeks later for neurology and i asked him about the empty sella. He told me that there was nothing he could help me with. I needed to keep the appt with endocrine and keep losing weight ( i refused bariatric surgery). I also gained another specialist an opthamologist. Who again told me about the pressure on my eyes. But as I was told by neurology it would take the longest for the csf fluid to come out from my eyes. So I follow up again here at the end of may.
Today is endocrine and while I have done a lot of research and have found very few specialists in the area of ess, I am wondering how today is going to go. I am hoping for more definitive answers to the diagnosis of ess. Hopefully I will be able to update with some news later.

REPLY

Have any of you been diagnosed with an empty cella indicating possible panhypopituitarism? My 3 past MRI's showed it and now my endroconologist wants me evaluated by a neurologist. I also am having tremors in my left baby finger. Thanks, Joan

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@jmb73

Have any of you been diagnosed with an empty cella indicating possible panhypopituitarism? My 3 past MRI's showed it and now my endroconologist wants me evaluated by a neurologist. I also am having tremors in my left baby finger. Thanks, Joan

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Hi @jmb73, you'll notice that I moved your message to this long-standing and still active discussion about Empty Sella Syndrome in the Brain & Nervous System. Help me understand the investigations you are undergoing. Panhypopituitarism is suspected and your endocrinologist wants to verify if Empty Sella Syndrome is the potential cause?

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@jmb73

Have any of you been diagnosed with an empty cella indicating possible panhypopituitarism? My 3 past MRI's showed it and now my endroconologist wants me evaluated by a neurologist. I also am having tremors in my left baby finger. Thanks, Joan

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Hi Joan! I did see a neurologist, but I was only diagnosed with the intracranial hypertension or pseudo tumor cerebri. I have a hx of graves disease, and a thyroid ablation with radioactive iodine when I was 19. The endocrine Dr. Seems to think my partial ess is due to the increased fluid pushing on the meneges and filling the cavity. Nothing to do with a birth defect. He is running labs to see if my hormones are off due to it. I still need to get the labs done. There isnt much out there on ESS. And while frustrating, the Hope is that maybe one day we will all have answers. There is a Facebook group if you have Facebook. They post questions and such, they tend to post a lot more there then here. You are the first post I have had since I made a comment on the site.

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Hello everybody, I've just joined this group today, because I was diagnose last week with ESS. Up till then, I had been getting an annual MRI to check on my adenoma, and had been taking Dostinex for three years to lower my prolactin levels which at first were hovering around 200. Normal range being below 18. I'm a 54-year old male.
So imagine my radiologist's surprise last week at finding an empty sella where my enlarged gland used to be. He was baffled.
I guess I'm sharing this because I wonder how many other members of this discussion have gone through this bizarre arc?

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@dankshin

Hello everybody, I've just joined this group today, because I was diagnose last week with ESS. Up till then, I had been getting an annual MRI to check on my adenoma, and had been taking Dostinex for three years to lower my prolactin levels which at first were hovering around 200. Normal range being below 18. I'm a 54-year old male.
So imagine my radiologist's surprise last week at finding an empty sella where my enlarged gland used to be. He was baffled.
I guess I'm sharing this because I wonder how many other members of this discussion have gone through this bizarre arc?

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Hi, @dankshin – welcome to Mayo Clinic Connect. Hoping members in this discussion like @jmb73 @cshrubb @sdsavage @cherrylistic @johnbishop @blange1977 and others will return to meet you, offer you support and answer any questions you may have.

That is a very recent diagnosis. How are you feeling about it? What symptoms led you to the doctor to figure out this new diagnosis?

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@dankshin

Hello everybody, I've just joined this group today, because I was diagnose last week with ESS. Up till then, I had been getting an annual MRI to check on my adenoma, and had been taking Dostinex for three years to lower my prolactin levels which at first were hovering around 200. Normal range being below 18. I'm a 54-year old male.
So imagine my radiologist's surprise last week at finding an empty sella where my enlarged gland used to be. He was baffled.
I guess I'm sharing this because I wonder how many other members of this discussion have gone through this bizarre arc?

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I was found to have ESS not because of an adenoma. But because my spinal fluid has increased because it thinks I have a tumor, the condition I have is called idiopathic intracranial hypertension or pseudotumor cerebri.

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@dankshin

Hello everybody, I've just joined this group today, because I was diagnose last week with ESS. Up till then, I had been getting an annual MRI to check on my adenoma, and had been taking Dostinex for three years to lower my prolactin levels which at first were hovering around 200. Normal range being below 18. I'm a 54-year old male.
So imagine my radiologist's surprise last week at finding an empty sella where my enlarged gland used to be. He was baffled.
I guess I'm sharing this because I wonder how many other members of this discussion have gone through this bizarre arc?

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Hi @dankshin, I would like to add my welcome to Connect along with @lisalucier and other members. I don't know very much about Empty Sella Syndrome other than what I've read on the National Organization for Rare Disorders site — https://rarediseases.org/rare-diseases/empty-sella-syndrome/. The site mentions that most individuals with empty sella syndrome do not have any symptoms and do not require treatment. If symptoms occur, a treatment is directed toward the specific symptoms in each individual.

Do you have any symptoms from the condition?

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@johnbishop

Hi @dankshin, I would like to add my welcome to Connect along with @lisalucier and other members. I don't know very much about Empty Sella Syndrome other than what I've read on the National Organization for Rare Disorders site — https://rarediseases.org/rare-diseases/empty-sella-syndrome/. The site mentions that most individuals with empty sella syndrome do not have any symptoms and do not require treatment. If symptoms occur, a treatment is directed toward the specific symptoms in each individual.

Do you have any symptoms from the condition?

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hi @johnbishop ,
I do not have any symptoms from this condition. With the IIH I have which caused the ESS, I do have symptoms.

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@cshrubb

hi @johnbishop ,
I do not have any symptoms from this condition. With the IIH I have which caused the ESS, I do have symptoms.

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Hi @csshrubb, Are you receiving any treatments for the idiopathic intracranial hypertension or pseudotumor cerebri?

Mayo Clinic has some information here:
Pseudotumor cerebri – Diagnosis & Treatment:
https://www.mayoclinic.org/diseases-conditions/pseudotumor-cerebri/diagnosis-treatment/drc-20354036

Google Scholar also shows a lot of articles for treatment of the condition:
https://scholar.google.com/scholar?q=idiopathic+intracranial+hypertension+treatment&hl=en&as_sdt=1,24&as_vis=1

Liked by Lisa Lucier

REPLY

I had an MRI done recently for an ear issue (which ended up showing nothing).. they did end up finding an empty sella though. On my report from the MRI it states this finding can be seen in patients with raised intracranial pressure or endocrinopathy? I am waiting on an appointment with neurology to discuss the findings and what steps need to be taken. In the meantime, I am looking for any information that you can provide.. please. Has anyone dealt with this? If it is due to intracranial pressure, what will be done? Am I going to be okay? I'm shaken up over this as I am young and have four amazing children who depend on me. Thank you in advance.

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@amomma4

I had an MRI done recently for an ear issue (which ended up showing nothing).. they did end up finding an empty sella though. On my report from the MRI it states this finding can be seen in patients with raised intracranial pressure or endocrinopathy? I am waiting on an appointment with neurology to discuss the findings and what steps need to be taken. In the meantime, I am looking for any information that you can provide.. please. Has anyone dealt with this? If it is due to intracranial pressure, what will be done? Am I going to be okay? I'm shaken up over this as I am young and have four amazing children who depend on me. Thank you in advance.

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Hi @amomma4, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion group about Empty Sella Syndrome. I did this so you can meet others who have this condition like @menville @jmb73 @cshrubb @sdsavage @cherrylistic @dankshin and more. Click VIEW & REPLY to read through past posts.

I find the information about empty sella syndrome on the NORD site to be excellent https://rarediseases.org/rare-diseases/empty-sella-syndrome/

It is upsetting to read the results of testing before being able to meet with a specialist. Waiting for an appointment with neurology must be tough. Most patients with ESS don't need treatment if they are not experiencing symptoms. Are you experiencing any symptoms? Has your ear issue been resolved?

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@colleenyoung

Hi @amomma4, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion group about Empty Sella Syndrome. I did this so you can meet others who have this condition like @menville @jmb73 @cshrubb @sdsavage @cherrylistic @dankshin and more. Click VIEW & REPLY to read through past posts.

I find the information about empty sella syndrome on the NORD site to be excellent https://rarediseases.org/rare-diseases/empty-sella-syndrome/

It is upsetting to read the results of testing before being able to meet with a specialist. Waiting for an appointment with neurology must be tough. Most patients with ESS don't need treatment if they are not experiencing symptoms. Are you experiencing any symptoms? Has your ear issue been resolved?

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@colleenyoung Thank you for moving my post to the correct area. I look forward to being able to educate myself better and learn more by meeting and speaking to others who have empty sella as well. I have an appointment with neurology this upcoming Wednesday to go over the next steps.

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