Hi @sandhya60, welcome to Connect. I'm glad that you re-ignited this discussion on Empty Stella. I hope by doing so that @frankie999 @nickryder @mouser @caras @mathewphilips may return to connect with you.

Here's some background info on Empty Stella Syndrome from NORD for anyone unfamiliar with the condition https://rarediseases.org/rare-diseases/empty-sella-syndrome/

Sandy, what symptoms or issues do you have that may be attributed to ESS? Headaches, vision issues, other?

Well, kinda weird, since the Neurologist who found it in my radiological exam essentially said its nothing to worry about...yet, I have started to weed out information the last 6 years and have found others with all the things that brought me into the whole thing with the neurological exam and the symptoms are all mirrored in complaints. So I guess it boils down to this....Do we associate our symptoms with this or do we believe the MD's who say, "no nothing to worry about..just treat your symptoms as if you were just anyone else with headaches, fatigue, menopause etc" You tell me.

Frustrating to say the least!

I was diagnosed about 4 years ago with partial ess. I also presented with hypopituitsrism that effected my prolactin levels, cortisol levels, TSH levels, estrogen, and testosterone levels. My blood pressure dropped to 70/30 and I would lose consciousness. My hair got thin and brittle, I had brain fog, I lost vision in my eyes except for the center, I had severe headaches that squeezed the base of my skull and neck. I lost feeling in my face and down both sides of my body. I couldn't hear except for loud ringing. I have severe right quadrant pain. I have gained 35 lbs in less than a year and have severe edema on legs, abdomen and face. Had an uncle that had an adenoma that was the size of a grapefruit. I have an aunt that had a acoustic neurons. I had a grandmother who had an adenoma in her temporal lobe who died of colon cancer. I was wondering if these are congenital and if there is a screening test to see if they are hereditary.

@hollyheinzig Hi, Holly. Sounds like a mess, to me. Sandy and the others who wrote that they were told it was of no consequence seem to have been given a downer cow. I do not think I have ESS, but I do have Primary Systemic Hereditary Lite Chain TTRwt Amyloidosis, with Cardiac involvement.Like ESS, it includes misfolded protein issues. Several doctors have told me "It is nothing to worry about. You will not have to worry about it, because you will die of some form of cancer, probably prostate, before the AL is any bother." So here is the point. I have started a little book about my own medical records and issues of the past 77 years. By limiting the piece to the clinical, hospital and family records which can be located, it is easier to decipher. It is still lengthy, but the practices has been very helpful. I have organized it so that there are sections for kidney, cardiac, lungs, liver, pancreas, genito-urinary, etc. It helps me wrap my mind around the thing in ways I could not have grasped without the practice. So if you and others are looking for ways to deal with this stuff, whether ESS, or Amyloidosis, or whatever, you might want to take a look at it at https://bit.Ly/1w7j4j8 "Amyloidosis Series 14.pdf" to see if you can use some of these formats. It is not easy, but it does help me feel that I am making a little contribution even while arguing with something that will probably kill me eventually. And I promise, I am not selling anything but a little hope and understanding.

Welcome to Connect, Holly.
You might be interested in watching this archived webinar about Congenital Anomalies of Brain and Skull https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-congenital-anomalies-of-spine-brain-skull/

Have you spoken with your doctor or neurologist about your family history and possible links?