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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shelby1959 | @shelby1959 | Jul 21, 2018

Hi everyone,
I just read my cat scan report, that I got because I have constant headaches, and it said I have empty sella. I’m at a loss for where to turn next. My headaches feel like pressure, in my face, and behind my eyes. Any ideas where to turn would be helpful.

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rcraftlady | @rcraftlady | Jul 21, 2018
In reply to @rcraftlady "I'm new today, so I apologize if I am jumping in at the wrong place. I..." + (show)
@rcraftlady

I'm new today, so I apologize if I am jumping in at the wrong place. I recently had a head trauma and while at the ER, I was given a CT Scan of my head and cervical spine. Yesterday, I read the CT-Scan report myself. It states that I have a partially empty sella trucica. I am unclear whether the empty sella is a result of the head trauma or prexisting. In my case, I think either could be true. Perhaps both are true. Perhaps the empty sella existed and the head trauma made it worse. It has been almost a month since the head trauma and I have had a headache constantly. I also have had intermittent clear fluid very slowly coming out of my left nostril. I would say neither of those issues should be ignored. The cerebral spinal fluid dripping out of my nose seems concerning. Yes??? The ER doctor did NOT mention the finding either on his discharge report nor to me, when he was telling me of the findings. I have a million questions and some very big concerns. First and foremost, the possibility of headaches is mentioned online repeatedly, but nowhere can I find any treatment recommendations for these headaches. It seems like it should be something more than throwing a pain med at the headache. If it is NSAIDS, that will not work for me. I have chronic kidney disease and do not take pain medications....period. I am very disturbed by the repeated mention of obese women with hypertension also having an empty sella. If these conditions cause the empty sella, how do they do that??? There is never any mention if these are issues that are causitive, incidental or a result of the empty sella. Althought it would make a great deal of sense, hormonally, nowhere can I find any information as to whether the injured/smashed pituitary gland is responsible for the weight gain/obesity and hypertension (or the other way around). Intutitively it could be either. The narratives linking the obesity and hypertension to the empty sella syndrome, almost seem accusatory, blaming obese women for giving themselves empty sella syndrome. I developed life-changing health issues at age 42. The health issues came on abruptly and were never explained. After this finding, I now wonder if I developed the empty sella at that time. I suddenly gained 60 pound in 3 months, with no change in eating habits and at the same time developed hypertension. I lost most of my eyebrows, all of my body hair and suddenly had a light mustache and a few hairs on my chin. Eventually, I was diagnosed with Hypothyroidism, that seemed to be caused by my pituitary gland, rather than my thyroid gland. At the same time I seemed to have developed hypercortisolism, and was wired, but tired 24/7, agitated jumpy and unfocused, suffered from night time anxiety and insomnia coupled with extreme fatigue. Prior to this, I had been a very high energy person, able to handle stress well and had a very focused and clear mind. I feel that perhaps empty sella syndrome ruined my health. I went from a thin, athletic, energetic and healthy 42-year old, with a near photographic memory to a very ill, exhausted, foggy brained 42-year old, who couldn't remember what they had just said. I would propose the empty sella syndrome is causitive of many health and cognitive issues and that those who suffer with it are being done a huge disservice. I wonder if it has anything to do with the fact that it seems to be predominately an issue found in women, who are also suddenly obese.

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Thank you Teresa for welcoming me and for your kind words. I wish you success and improved health in your journey.

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rcraftlady | @rcraftlady | Jul 21, 2018
In reply to @jimmyj "Have others experienced memory issues?" + (show)
@jimmyj

Have others experienced memory issues?

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Yes, my memory issues are very troubling, as you mentioned I too used to have a very fine memory and now I have periods where my memory is really troubling. When I saw the endocrinologists they pointed the finger to the neurologists. The neurologists, felt my memory issues were all endocrine related. I honestly don't know, but I do know that these issues are the most troubling.

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edda | @edda | Jul 21, 2018

Hello Shelby, I have the same. I could have written it myself.
Had also CT and MRIs done and nothing really was discovered. What is really concerning me too, is the pressure behind
my eyes. May be, somebody can help us, because. It knowing, is the worst!

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menville | @menville | Jul 21, 2018

Have them investigate any impact on the 5th nerve.....I ran into these pressure issues myself and the anatomical issues of the atrophy I suffer, impact on pituitary, etc. I have a major complex neurological case that includes all of what you all are discussing and more issues than I can explain....However having suffered from Cushings, degeneration of the brain and the anatomical impact also has impacted the nerves in the area. I am not a physician but have been studied for years by many institutions. This is a suggestion for you and hopefully they can rule it in or out of the equation for you. Best of luck!!

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sdsavage | @sdsavage | Aug 27, 2018

I received word from my G.P. that ESS was found on an MRI I'd had to rule out neuralgia. (I have Herpes Simplex I and I had a flare-up that caused pain in the trigeminal nerve). It was an incidental finding. I fall into the "overweight, middle-aged woman" category. I am mostly asymptomatic, although since my late 30's I've had cold intolerance. I've also had hot flashes that came and went for the last 10 years, but this year I started full-blown perimenopause, bouts of constipation, a decline in memory and joint stiffness. None of the labs my G.P. ran for these complaints showed any issues. I know some of these can be attributed to hypopituitarism, so I'm curious to see what the endocrinologist has to say at the appointment I have in late September. The literature makes it sound like hypertension (which I really don't seem to have, I run in the mid 110/60's to sometimes around 140/88-90) creates pressure in the brain, but I wouldn't think blood pressure would be related to spinal fluid pressure. Then again, I'm not a doctor. Does anyone know if weight loss can reverse this condition?

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cherrylistic | @cherrylistic | Dec 10, 2018

Hello. I too have a possibility of having this diagnosis. It’s either this or an actual tumor. My symptoms are what caused me to get an MRI done and how it was discovered. Double vision, blurred vision, headaches that became different from the migraines I had been having for years. I’m also experiencing swallowing sides, but I’m told that may be due to the Hashimotos. I also have severe sleep issues. My cortisol levels are off the charts especially at night. I very seldom am ever able to sleep at night, and do most sleeping during the day. I also have horrible fatigue. I was recently diagnosed with Ehlers Danlos and POTS. Almost 20 yrs ago, I received a do of fibromyalgia. I’m a 44 yr old female. Looking to find any and all information I can about this and what others like me have experienced. I appreciate any and all feedback.

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1 reply
Lisa Lucier | @lisalucier | Dec 13, 2018
In reply to @cherrylistic "Hello. I too have a possibility of having this diagnosis. It’s either this or an actual..." + (show)
@cherrylistic

Hello. I too have a possibility of having this diagnosis. It’s either this or an actual tumor. My symptoms are what caused me to get an MRI done and how it was discovered. Double vision, blurred vision, headaches that became different from the migraines I had been having for years. I’m also experiencing swallowing sides, but I’m told that may be due to the Hashimotos. I also have severe sleep issues. My cortisol levels are off the charts especially at night. I very seldom am ever able to sleep at night, and do most sleeping during the day. I also have horrible fatigue. I was recently diagnosed with Ehlers Danlos and POTS. Almost 20 yrs ago, I received a do of fibromyalgia. I’m a 44 yr old female. Looking to find any and all information I can about this and what others like me have experienced. I appreciate any and all feedback.

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Hi, @cherrylistic. Welcome to Mayo Clinic Connect. Sounds like you've been through a lot with your health.

Since you've experienced symptoms (double vision, blurred vision, headaches) that led to your MRI and the possibility of the diagnosis of Empty Sella Syndrome, I'd like to invite some of the other members in this discussion to return and offer any thoughts they may have about your situation. Please meet @sdsavage @sherrilynn @dazza333 @rcraftlady @jimmyj. I'd also like you to meet @jenniferhunter and @johnbishop, who may also have some input.

Given your other diagnoses, you may want to check out these other Mayo Clinic Connect discussions, as well:

- POTS https://connect.mayoclinic.org/discussion/auto-immune-diseasehypothyroid-postural-tachycardia-syndrome

- Fibromyalgia https://connect.mayoclinic.org/discussion/fibromyalgia-2/

- Hashimoto's disease and IVIG treatment https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment

- Ehlers Danlos syndrome https://connect.mayoclinic.org/discussion/possible-ehlers-danlos-syndrome-with-craniocervical-instability

When will you hear more about a definitive diagnosis related to Empty Sella Syndrome, @cherrylistic?

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 13, 2018

Hi, @cherrylistic. I would like to add my welcome to Connect along with @lisalucier and others. Another discussion you might find helpful includes a link to a TED Talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
-- https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

John

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blange1977 | @blange1977 | Dec 20, 2018

I was recently diagnosed with empty sella. I have multiple other symptoms and they all started immediately after having an epidural injection in my lumbar area. The other symptoms are tremors, dizziness, physical and mental fatigue, feeling of being cold on the inside. burning hot at other times, stumbling, cringing from pain enough to burst blood vessels in my eye, loss of vision, flashes of light, and constant thirst. Has anyone else had this happen? The doctors only want to look at MRIs and not connect the symptoms or the cause.

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