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

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

Jump to this post

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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