Empty Sella Syndrome Member Introductions

Please take a moment to introduce yourself to the community. Everyone here has something to share about Empty Sella Syndrome. For the discussion boards, we ask that you keep your full name and location private.

I have secondary empty sella syndrome after successful removal of a pituitary macroadenoma in 1999.

I got help from our group’ empty sella answers’ group . By talking with these wonderful people I got up the courage to go back to my endo who told me ESS was “nothing” just a normal variant of the MRI. After becoming like a 90 year old person at the age of 50 I learned to question my ENDO and insist on a stim test which showed the pituitary could not function when stimulated. Consequently went on Growth Hormone, for the past 3 years. Also have chronic pain with fibromyalgia and chronic fatigue. So I can benefit from others suggestions to help.

Trina

I was diagnosed with Empty Sella fifteen years ago. Anxious to learn all that I can.
Thank you for setting this group up.
Nancy/kaiwaina

I have Sheehan’s and Partial Empty Sella and have had for 30 years although I’ve only been diagnosed this last year. Four years ago my GP diagnosed me with Post Partum Pituitary Necrosis and gave me Armour but never gave me any other info or told me I needed an Endo. I need more info! Thanks for inviting me!

Marina

I have Empty Sella Syndrome. fibromyalgia, arthritis, chronic pain. Am interested in a community of people with similar physical symptoms to learn about possible ways of coping.

Dyke-Davidoff Masson syndrome from birth.

I was diagnosed with Empty Sella Syndrome about three years ago. I was not born with this condition it developed following a long term fight with a chronic sinus infection. I want to learn as much as I can about this so I am able to help guide my doctor’s into providing me with the best health care that I can get to remain healthy and active.

I have ESS and would like to find out more about it.
Thanks,
Sunnykins

I was diagnosed many years ago w/empty sellar syndrome. I have only been able to find limited information on this condition and how it affects your body. My doctor did perform a blood test to check the pituitary gland, and he said it came back showing it was alright. He seemed to think I should not worry about this, but I still do. I am a 63 yrs old female and would like to find out more about this disorder and how it affects you.

Hi…
My name is Dee. I’m 42 years old and have recently been diagnosed with Empty Sella Syndrome. I am very much interested in hearing from people who have this disorder and learning as much as I can about it.

I am a 52 year old female who was diagnosed with Empty Sella Syndrome 30 years ago. I do not have any symptoms- that I am aware of… but have had difficulty getting any information on this syndrome over the years. I am interested in talking with others and learning more.I am also wondering if this syndrome was inherited by my children.

Empty sella been off of humatrope and testosteron for three years from loss of health insurance. Just went to endo and been retested and surprise I still have empty sella

I am interested in this condition b/c I have it. i would like to learn more about testing, what kind of Dr to see, and if the things that are wrong with me have anythign to do with ESS.

hello i was in a car wreck in jan2007 i have had a low grade headache since but 8 1/2 weeks ago it has got unbearable went to hospital had a mri and they tild me i had ess are ther any help for it

I was recently diagnosed during a M.RI. scan as having a partially empty sella. My doctor didn’t feel it important,and had very little info about the situation. I just wanted to see what others who have the same condition have to say about it.

I look forward to talking to you!

I WAS DIGNOISED W/ A PIUITARY TUMOR SEVERAL YEARS AGO AND HAD SURGERY.I HAVE EEN KEEPING UP W/ MY MRI APPT.'S ALL HAS BEEN WELL. MY DR. HAS ORDERED ANOTHER MRI TO CK. MY SELLA AND I DON’T UNDERSTAND WHY ! I HOPE YOUCAN HELP ME W/ SOME REASONS WHY.
THANK YOU,
MA

I was just diagnosed with ESS, and I’m joining the group to discuss issues related to it.

Longtime member of the yahoo ESS community and just now attempting to navigate this new site–which looks like it could be fun–but I am a bit lost
right now (just like in ‘realworld’, nothing new there!)

Anyone else have memory problems that go along with their empty sella? Mind going blank, forgetting faces & places, “where am I going”, etc.?
My memory troubles are becoming a little scary to me.

Now what was I saying…?

:slight_smile:

Glad to see old friends and meet new ones here –
with our common ground of informing ourselves
and overcoming all the odds - together.
Cheers!


__/]

I was dx with ESS along with very high csf pressure about 6 mionths ago after a car accident. I take acetazolimide to keep the pressure from going higher. Seeing a neurosurgeon and an endo. My labs are pretty ok. At first the regular dr’s said my sella must have ‘imploded’ from the car accident then caused the csf pressure to increase. Now the consenus from the specialists is that the accident (my car was hit twice) probably instigated the huge increase in csf pressure and THEN the sella imploded. There is no evidence, MRI, CTs nor anecdotal that I had ESS before the accident. Without the acetezolimide, the headaches, balance problems, other odd neuro symptoms are awful. So I am grateful for this med.