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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

Kari Ulrich, Alumna Mentor | @kariulrich | Mar 27, 2017

Wondering if anyone has daily headaches? What have you done to manage headaches?

REPLY
jes078 | @jes078 | Apr 7, 2017

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.

REPLY
12 replies
Moderator
Colleen Young | @colleenyoung | Apr 7, 2017
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

Welcome to Connect, @jes078.
I’d like to introduce you to @sandhya60 @kariulrich @cindybrown @rkyobo and @mineolap2, who are also talking about empty sella here.
@joycem also mentions having methylene tetrahydrofolate reductase (MTHFR) mutation. There’s an older discussion talking about MTHFR here that you may be interested in reading. http://mayocl.in/2nlSnbE

Good luck with the testing today. I hope you get to the bottom of finding a cause and thereby relief for the intractable headache (IH). Do they suspect clotting or a dural arteriovenous fistula (DAVF)?

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Apr 7, 2017
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

Hi @jes078, I was diagnosed with a pituitary adenoma, and I also get headaches a lot. That have not been able to correlate my headaches with the adenoma. I have been diagnosed with cluster headaches, the most painful headaches… I cannot describe. I do have at home oxygen and that has made a difference for me. I believe I have been checked for MTHFR… so many work ups it is hard to remember!! Just curious if you have been checked for Ehlers-Danlos Syndrome?

REPLY
jes078 | @jes078 | Apr 7, 2017
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

Thanks @colleenyoung 🙂 The Intractable Headache is caused by Intracranial Hypertension (IH). They suspect the cause of the Intracramial Hypertension MAY be due to a clot (MTHFR) or due to a DAVF. Otherwise, it could just be idiopathic. The MRA/MRV went well today. I also got an emergency appointment with the opthamologist due to a sudden & severe decline in vision. Unfortunately, there’s nothing more that can be done right now, aside from the follow up with the neurologist first thing Monday morning. Have a wonderful weekend!

REPLY
jes078 | @jes078 | Apr 7, 2017
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

Hi @kariulrich, yikes and yikes. Neither of those sound the least bit fun. I get high pressure headaches from the intracranial hypertension and migraines. The combination are excruciating. I can’t even begin to fathom worse. I do recall seeing a show where a guy that gets cluster headaches treats them with psilocybin mushrooms. He takes them once a month and hasn’t had one in years. Please don’t read that as as a suggestion or even approval. It’s just information I happened to recall. I haven’t been tested for ED… may I ask what started you on that thought?

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Apr 7, 2017
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

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.

REPLY
mineolap2 | @mineolap2 | Apr 10, 2017
In reply to @mineolap2 "I also rec'd this diagnosis thru an MRI this month. The MRI was a follow up..." + (show)
@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.

Jump to this post

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.

REPLY
Moderator
Colleen Young | @colleenyoung | Apr 11, 2017
In reply to @mineolap2 "I also rec'd this diagnosis thru an MRI this month. The MRI was a follow up..." + (show)
@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.

Jump to this post

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.

REPLY
jes078 | @jes078 | Apr 11, 2017
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

@kariulrich, Interesting. I wasn’t aware of the correlation. I will definitely take a look! Thanks for the puzzle piece!

REPLY
jes078 | @jes078 | Apr 11, 2017
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

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.

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Apr 12, 2017
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

Thinking of you! @jes078. One moment at a time! How are you feeling about all of this?

REPLY
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