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

Don't know if you can help but the other day I had an MRI of my head because I suffer from really bad migraines sometimes they last 9 days yes 9 days of pure hell. I got my results today and they said I have a flattened pituitary gland. I also have a lot of blurry vision I'm nauseous a lot and my thyroid levels are up and down one minute they're high next minute they're low. Should I be concerned? What could be wrong with me. I've been told in the past when I was having my seizures that I have a pseudo tumor but nobody's done anything, now all of a sudden they want me to see another specialist. I'm kind of freaking out.

Liked by dazza333

REPLY

Hi Sherrilyne, you absolutely have all the signs and symptoms of Empty Sella Syndrome which is where the pituitary gland can be flattened, but sometimes still able to work, within the Sella which is a small bony structure within which the pituitary gland is held. The pituitary gland can also be damaged or crushed by, usually benign, tumours. The key to this is for you to have the relevant blood tests to see which, if any, of your hormones are not being sufficiently produced such as thyroid hormone lutenizing hormone, folicle stimulating hormone etc and on a more serious note that your cortisol and electrolytes in your blood are adequate. So, if in the UK go to your GP to get the ball rolling and if in the US or elsewhere book to have a consultation with an endocrinologist ASAP. Hope this helps. Darrell

REPLY

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.

REPLY

I was diagnosed with ESS around the end of May 2018. My doctor is working on getting me in to see a specialist.

I have been having severe headaches for a couple years and had gone in to the doctor multiple times trying to figure out a possible solution. 9 months ago I start noticing a sleep disorder with some fatigue.

A sleep study showed that I have sleep apnea with 89 events an hour and a blood/oxygen level at about 50%. The doctors felt that the apnea might be where the head aches were coming from and the ENT suggested that fixing my deviated septum and a cpap would resolve my sleeping issues. Two surgeries later and a cpap, still no improvement on the sleep and fatigue.

I was then sent in for an MRI (with contrast). Results showed ESS along with a couple other findings. And the research begins.

The tiredness and fatigue are progressively getting worse. Other symptoms have been memory loss, and a slight vision blurring. The fatigue and memory lose have been the most difficult to deal with. The headaches, which usually last a day or two, I have learned to deal with. With the memory, I have had two incidents where I walked out of store and I didn't know where I was or where I parked my car. The episodes only lasted a few seconds but were very disconcerting. Now, on occasion, when I get into the car with the family, I have to ask where we are going before I remember. My memory, prior to about a year ago was solid. It's like I could submit a query with the correct results returned. After the tiredness and fatigue started I have issues with recalling some of the memories until someone reminds me.

REPLY

Have others experienced memory issues?

Liked by rcraftlady

REPLY

Hi @jimmyj and @rcraftlady welcome to Connect and the ESS discussion group.

Jimmy, In reading about empty sella syndrome on the NORD site https://rarediseases.org/rare-diseases/empty-sella-syndrome/ I didn’t see memory issues as one of the signs or symptoms of ESS. However, fatigue can certainly lead to cognitive impairment. Are you referring to issues with long term (like not remembering details of a past vacation) or short term memory (like forgetting what you went upstairs for)?

REPLY

@jimmyj

Hi, jimmy, Do you use oxygen at night with your cpap?
How is your oxygen during the day? Do you have a pulse oximeter and check your oxygen.
Jake

REPLY
@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.

Jump to this post

Hello @rcraftlady

I would like to also welcome you to Connect.

I admire that you did your due diligence in reading the report of the CT scan for yourself. That was great and it gave you additional information. I encourage you to keep persevering for answers and help. Rare disorders (I have one myself) take a lot of work and effort on the part of the patient to look for doctors who can offer help and assistance.

I wish you well and I hope that you continue to post. I look forward to hearing from you again and knowing what steps you are taking next.

Teresa

REPLY

The memories issues seem to mainly deal with short term but since i started noticing the issues starting my memories have been difficult to recall, until someone reminds me. For the most part, my memories all seem to be intact, just unable to recall some with help.

no oxygen, i will check into that, and a way to monitor.

Liked by rcraftlady

REPLY

Yes I have experienced many, if not the issues that you have mentioned 2jimmyj. If you have a few minutes, you may want to read my post. The issues that bother me the most….also… are the memory issues and the fatigue. I too have been using a CPAP, although when I had my head injury in May 2018 and had evidence of Cerebral Spinal Fluid leaking from a tear or tears in the lining of my brain, I stopped using the CPAP for fear I would give myself meningitis. I have mentioned this to three or four physicians and they all seemed to agree that this is a good idea, but I had hoped that they would give me some guidance. I don't particularly like using the CPAP, but not using it seems to leave me with a headache, fuzzy brained and unrefreshed in the morning and exhausted throughout the day. I found myself hypothyroid and have issues that I think are cortisol related (also can be related to the pituitary gland). Thus far, I have found that physicians and healthcare providers are very unfamiliar with empty sella turcica and the sella turcica in general. They have thus far spent more time avoiding the topic than they have addressing it. I have read that it is rare and not many physicians have experience treating this syndrome. I wonder if it is less rare than they suspect and that many issues like headaches, weight gain (and resultant obstructive sleep apnea), fatigue (caused both by excess and then depleted cortisol and sleep issues), Cushings Syndrome, hypertension and hypothyroidism that is not caused by Hashimotos thryroiditis (as mine isn't) and the resultant weight gain… are actually the result of an Empty Sella Turcica. I also worry that I won't find a doctor who has the experience to help me. Has anyone been to an endocrinologist specializing in the Pituitary gland, rather than a general endocrinologist?????

REPLY

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.

Liked by rcraftlady

REPLY
@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.

Jump to this post

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

REPLY
@jimmyj

Have others experienced memory issues?

Jump to this post

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.

REPLY

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!

REPLY

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!!

REPLY
Please login or register to post a reply.