1. < Brain & Nervous System

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

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shayla7 | @shayla7 | Oct 30, 2024

Can anyone recommend a Mayo - Rochester doctor that specializes in Empty Sella Syndrome?

Thank you
Shayla

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Oct 30, 2024
In reply to @shayla7 "Can anyone recommend a Mayo - Rochester doctor that specializes in Empty Sella Syndrome? Thank you..." + (show)
@shayla7

Can anyone recommend a Mayo - Rochester doctor that specializes in Empty Sella Syndrome?

Thank you
Shayla

Jump to this post

Hi, @shayla7 - A couple of Mayo Clinic physicians who served as authors of this paper on Empty Sella Syndrome might be potential sources for you:

Here is the paper I'm referencing:
"Does pituitary compression/empty sella syndrome contribute to MRI-negative Cushing’s disease?" Journal of Neurosurgery
https://thejns.org/focus/view/journals/neurosurg-focus/48/6/article-pE3.xml
Here are the physicians who were part of the authorship team for this paper who practice at Mayo Clinic:
Jamie J. Van Gompel, M.D., a neurosurgeon
https://www.mayoclinic.org/biographies/van-gompel-jamie-j-m-d/bio-20087329
Irina Bancos, M.D., M.S., and endocrinologist
https://www.mayoclinic.org/biographies/bancos-irina-m-d-m-s/bio-20055627
Is Empty Sella Syndrome a diagnosis you've been given, @shayla7? If so, will you tell us what was happening with you that prompted you to go see a physician?

REPLY
1 reply
tammyjbell | @tammyjbell | Dec 22, 2024

Oddly I just had a CT. They found partially empty sella configuration and bilaterial tranverse sinuses being small in caliber. I'm scared of intercaranial pressure. I'm wanting to have a MRV. I did have a hysterectomy in August but had some hormone tests done and all look normal. So j don't know what's causing this. I also had an emergency surgery 9 days after my hysterectomy and I guess abdominal surgery can cause intercaranial pressure?? I wish someone knew to give some insight and help w the anxiety of it all

REPLY
tammyjbell | @tammyjbell | Dec 22, 2024
In reply to @nodakchik "I am currently being worked up for terrible headaches. Had an MRI of my brain and..." + (show)
@nodakchik

I am currently being worked up for terrible headaches. Had an MRI of my brain and aside from finding out I probably had a stroke, the report states, "incidental partially empty sella" is found. Having no idea of what this was, I started researching it. I have so many of the symptoms. Have asked the Neurologist about it but was told that headaches are not a component of this disorder. Everything I've read states headaches are experienced by 90% of those with this condition. We are still working on a cause for my headaches but wondering what symptoms others are having with the empty sella...?? I don't think I've had my prolactin level checked (but my daughter recently found out she has a pituitary prolatinoma)- so then I also wonder if there's a heriditary component to any of this. ??? Any info is appreciated!!

Jump to this post

I just had CT. Discovered partially empty sella configuration and bilaterial tranverse sinuses being small in caliber. Waiting for a MRV. I'm not sure but I have headaches, dizziness some nauseous and vison is off. My optomologist said there is no optic nerve damage so there is no pseudotumor cerebri. But I worry about intercaranial pressure because I had 2 surgeries 9 days apart

REPLY
tammyjbell | @tammyjbell | Dec 22, 2024
In reply to @jes078 "I received the empty sella dx while getting a workup for intractable headache. After several years..." + (show)
@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.

Jump to this post

I seen an optomologist and he said there is no optic nerve damage. Should I worry about intercaranial pressure then??? Or no?? I was told if there is no damage to the optical nerve then there should be no intercaranial pressure

REPLY
tammyjbell | @tammyjbell | Dec 22, 2024

Oddly I just had a CT. They found partially empty sella configuration and bilaterial tranverse sinuses being small in caliber. I'm scared of intercaranial pressure. I'm wanting to have a MRV. I did have a hysterectomy in August but had some hormone tests done and all look normal. So j don't know what's causing this. I also had an emergency surgery 9 days after my hysterectomy and I guess abdominal surgery can cause intercaranial pressure?? I wish someone knew to give some insight and help w the anxiety of it all

REPLY
tammyjbell | @tammyjbell | 4 days ago
In reply to @lisalucier "Hi, @shayla7 - A couple of Mayo Clinic physicians who served as authors of this paper..." + (show)
@lisalucier

Hi, @shayla7 - A couple of Mayo Clinic physicians who served as authors of this paper on Empty Sella Syndrome might be potential sources for you:

Here is the paper I'm referencing:
"Does pituitary compression/empty sella syndrome contribute to MRI-negative Cushing’s disease?" Journal of Neurosurgery
https://thejns.org/focus/view/journals/neurosurg-focus/48/6/article-pE3.xml
Here are the physicians who were part of the authorship team for this paper who practice at Mayo Clinic:
Jamie J. Van Gompel, M.D., a neurosurgeon
https://www.mayoclinic.org/biographies/van-gompel-jamie-j-m-d/bio-20087329
Irina Bancos, M.D., M.S., and endocrinologist
https://www.mayoclinic.org/biographies/bancos-irina-m-d-m-s/bio-20055627
Is Empty Sella Syndrome a diagnosis you've been given, @shayla7? If so, will you tell us what was happening with you that prompted you to go see a physician?

Jump to this post

My CT showed partially empty sella configuration and bilaterial tranverse sinuses being small in caliber. I have to have an MRI before seeing endocrinologist

REPLY
cheyne | @cheyne | 3 days ago

Hi,
Just happened upon this threat. I also have recently had an MRI showing partially empty Sella and chronic small vessel disease.
Not sure what to make of it, nobody is making any comments yet. My research suggests the low / empty Sella is treatable and should not be left empty. Early days for me, might have some answers early next month when I'm due back for my follow up.
Cheers

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