Empty Sella Syndrome
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
@mineolap2 I also rec’d this diagnosis thru an MRI this month. The MRI was a follow up to determine if a colloid cyst had grown and was causing my headaches and neck pain. The cyst was previously found by cat scan. Like others here I was also told it was nothing of concern. Interestingly the cyst doesn’t even show on the MRI. I am already being treated by a neurologist for essential tremor. Plan to research further and discuss with him. FYI I am female and have had weight problem at times in my life but certainly not obese.
Due to vision issues my opthomologist ordered several vision tests. Heard today the results were abnormal and I’m being referred to a neuro opthomologist. Findings said “suspicious for process affecting the optic chasm”. Not sure what it means but hope to get appt soon.
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7524
Joined: Jul 23, 2014
@mineolap2 I also rec’d this diagnosis thru an MRI this month. The MRI was a follow up to determine if a colloid cyst had grown and was causing my headaches and neck pain. The cyst was previously found by cat scan. Like others here I was also told it was nothing of concern. Interestingly the cyst doesn’t even show on the MRI. I am already being treated by a neurologist for essential tremor. Plan to research further and discuss with him. FYI I am female and have had weight problem at times in my life but certainly not obese.
mineolap2 – While it’s never great to hear that test results are abnormal, at least you have something to investigate and hopefully this will lead to solutions. Best of luck and keep us posted.
Liked by Teresa, Volunteer Mentor
jes078
@jes078
@jes078
Posts: 6
Joined: Apr 07, 2017
@jes078 I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!
P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.
@kariulrich, Interesting. I wasn’t aware of the correlation. I will definitely take a look! Thanks for the puzzle piece!
Liked by Kari Ulrich, Volunteer Mentor
jes078
@jes078
@jes078
Posts: 6
Joined: Apr 07, 2017
@jes078 I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!
P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.
So the results are in, and not quite what anyone was expecting. The MRA was “normal”, which means blood flow is getting to my brain okay. However, the MRV indicated “The nondominant
left transverse and sigmoid sinus demonstrate multifocal stenosis of
the sigmoid sinus laterally.” Which means blood/CSF flow away from the brain are obstructed. And “There is a partially empty sella.” Neuro indicated IH could cause the stenosis, or stenosis could cause the IH. Or any number of other things. Either way, a therapeutic lumbar puncture has been ordered to determine whether or not a shunt will be effective. She also added another 20mg lasix and ordered Botox injections. Follow up in 3 weeks. Hard to say what’s next.
Kari Ulrich, Volunteer Mentor
@kariulrich
@kariulrich
Posts: 539
Joined: Jul 15, 2011
@jes078 I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!
P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.
Thinking of you! @jes078. One moment at a time! How are you feeling about all of this?
Liked by Teresa, Volunteer Mentor
jes078
@jes078
@jes078
Posts: 6
Joined: Apr 07, 2017
@jes078 I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!
P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.
Thanks @kariulrich! My feelings are a little on the fence at the moment. One the one hand, I’m elated to finally be getting some answers as to what’s causing quite a few of my most concerning symptoms. On the other hand, I’m quite concerned that the medical approach up to this point has failed. At this point, we’re grasping at straws. If it doesn’t start working quickly, the only other option is to go along with the shunt placement. Invasive brain surgery is not my idea of a good time. 🙁 How are you fairing with your headaches? Other than oxygen, have you found anything that lends relief?
Kari Ulrich, Volunteer Mentor
@kariulrich
@kariulrich
Posts: 539
Joined: Jul 15, 2011
@jes078 I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!
P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.
I have not found anything that really helps with my headaches. Usually sleep. I will be thinking of you! Invasive brain surgery not my idea of fun either!
Blessedmama
@rmueller628
@rmueller628
Posts: 1
Joined: Aug 09, 2017
aprillelain
@aprillelain
@aprillelain
Posts: 9
Joined: Aug 11, 2017
Hello everyone. I was diagnosed with Empty Sella Syndrome on several MRI’s over the past 5 years. It all started with me getting headaches that felt like my head was being crushed in a vice and not being able to see as well. I was also seeing black spots floating around in my vision all the time, so I made an appointment with my eye doctor. He noticed my optic nerves were swollen (papilledema) and sent me for an MRI to see if I had a brain tumor and to an eye specialist, a neuro-opthamologist. When the MRI showed the ESS, he ordered a lumbar puncture (spinal tap). My opening pressure was 36, normal is 8-18. It was then that I was diagnosed with Idiopathic Intracranial Hypertension, otherwise previously called Pseudo Tumor Cerebri. They started me on Diamox to decrease the production of the Cerebral Spinal Fluid (CSF). For over 4 years I had complications, a lot of different meds, several long hospital stays and surgeries, and saw many different doctors. Finally in January of this year, after over 35+ spinal taps, so many MRI’s, MRA, MRV and CT Scans, a specialist at the new hospital I was transferred to, took one look at my MRA and asked why no one had done anything about the stenosis in my left transverse sinus. I had an emergency angiogram with angioplasty done that day. 10 days later I had 2 stents placed in my left side transverse sinus. We also learned that my right one is congenitally closed and unable to be opened or stented. Since then, my eye sight has stabilized (I had permanently lost my peripheral vision prior to stenting), my headaches have lessend and my ESS is improved to partial ESS since the CSF is not so high that it is squishing my pituitary glad flat.
While I realize I wrote almost a book here, there are many of us with the rare brain disorder of Idiopathic Intracranial Hypertension (IIH) / Pseudo Tumor Cerebri (PTC) that have ESS. There are many groups on the popular social media sites that you can join or just read the public comments in open groups.
I’m not suggesting any of you have IIH/PTC, but that maybe some of us IHer’s can help you understand what is happening and give you suggestions on what to ask your doctors to look or test for.
Liked by Colleen Young, Connect Director, aprillelain
aprillelain
@aprillelain
@aprillelain
Posts: 9
Joined: Aug 11, 2017
@cindybrown I just had an MRI done due at worsening headaches and blurry vision. The MRI report showed a partially empty sella. My primary care physician just called and said my results were normal. I asked about the sella issue and he said it doesn’t usually cause headaches, but he can refer me to an endocrinologist to have my hormone levels checked. I told him I want to do that. We’ll see what comes of it or if all of my issues are just due to menopause.
@cindybrown with the blurry vision have you had your eye doctor check your optic nerves for swelling (papilledema)?
aprillelain
@aprillelain
@aprillelain
Posts: 9
Joined: Aug 11, 2017
@jes078 I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!
P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.
@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.
aprillelain
@aprillelain
@aprillelain
Posts: 9
Joined: Aug 11, 2017
@jes078 I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!
P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.
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!
ShaRenKa
@sharenka
@sharenka
Posts: 2
Joined: Aug 14, 2017
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?
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7524
Joined: Jul 23, 2014
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?
@kariulrich
In reply to @jes078
The empty sella, and MTHFR made me think about EDS, as both have been talked about in EDS communities. I do not know a lot about MTHFR, but found it interesting. So many illness over lap. You mentioned a host of other related issues… that peaked my curiosity.