Empty Sella Syndrome

@cindybrown with the blurry vision have you had your eye doctor check your optic nerves for swelling (papilledema)?

@jes078 I'm an IHer too! I'm in several of the groups on social media where we can all instantly talk and ask questions. I've been diagnosed for 5 years now and the IH community has grown all over the world.

Have your doctors discussed with you instead of getting a shunt to have stents placed to open up the stenosis of your transverse sinus? It is A LOT less invasive and has a overnight stay and only a small incision in your groin where they go in with a catheter to place the stents in your brain. I've been diagnosed with IIH/PTC for 5 years and researched like crazy and joined all the groups i could find on FB. There are about 8,000 of us world wide now. I had my stents placed in January of this year and it is SO much better! I'm slowly regaining my life back. Will be thinking of you!

Hi I'm a 62 yr old female diagnosed 17 + yrs ago with total empty sella syndrome, discovered only because I had bad vision problems and what I called ice pick headaches. Later I went to a specialist in ESS and I asked my Dr if ESS was causing my face and neck swell at night so bad you cant see my eyeballs and my chin is now laying on my chest late at night or when I am extremely tired and she said ESS had nothing to do with it. She was blunt..rude and barely looked at me. I walked away so discouraged as I was hiding in my home...tired of the stares from others in public, still this way today. Over the past several years I have discovered little "rivers"..snake like worms on my forehead coming from top to bottom...and I cant shake the idea of Cerebral leakage causing my swelling. Mean while I have headaches, memory, thinking problems and very bad vision problems when Im swollen. My vision even now without swelling is bad...it will be ok then I will have trouble reading this as I am right now. It was 20 yrs ago in a bad car accident that gave me whiplash, a concussion and several bone chips that floated around for yrs in the top of my spine (neck) , I lived on codeine for 3 yrs before my dr took me off it, Him saying they had all been absorbed. Could this have caused the ESS? And now that its total ESS can there be Cerebral fluid leaking down into my face and neck ? Any Ideas out there?

Welcome @sharenka,
I moved your message to this existing discussion on Empty Sella Syndrome so that you could meet other members like @aprillelain @rmueller628 @jes078 @sandhya60 @cindybrown as well as @kariulrich. Simply click VIEW & REPLY in the email notification to see the entire discussion.

ShaRenKa, have you considered getting a second opinion?

@sharenka have you been to an opthalmologist to check your eyes for papilledema? It's swelling of the optic nerve. What you described in your post sounds a lot like Intracranial Hypertension. As for the CSF leaks, it is possible to leak out if your eyes , nose and ears, although very rare. I would recommend seeing a new Neurologist or neurosurgeon to check into that and ask to be tested for IIH.

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?

I was diagnosed with secondary empty sella syndrome in 2017, it is probably the result of a head injury in 2015, after the head injury, about 2-3 months I started getting extremely fatigued, memory problems, lost words, no libido, ED, moody, irritable. I saw my doctor for a bad chest, he looked at me and said he would take some blood as I looked "knackered", I was not producing LH nor FSH and as such no testosterone, he then referred me to an endocrinologist who following an MRI started me on IM HRT which is struggling to get my numbers up but I'm told to be patient. The MRI showed that the anterior portion of my pituitary gland had been torn from the stem. My endocrinologist and CNS say that my symptoms are nothing to do with secondary empty sella, however, all of the evidence I read from other ESS sufferers is almost identical symptoms. I think the Drs are really not aware of the damage this syndrome causes. I have not felt like me since before my head injury, I think that guy has gone. I'm due a full head MRI this week to check for further brain injury as the first MRI was just pituitary specific. I've had loads of support from the pituitary foundation in UK and Headway Brain Injury Foundation.