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

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

My son has been diagnosed with a large pituitary tumor. He has too much prolactin and very little testosterone. Every few days he has a raging fit. After it’s done he says he can feel his brain compress which causes the rage. He can’t stop it. And then he can feel the compression slowly decrease and he feels better. Is it possible that an empty Stella can come and go? His mri’s don’t show one, but it makes sense that it would be one when he describes it.

REPLY

Hx: blood pressure. Left parietal mini stroke. RCVC disorder.

Symptoms: First year and 8 months endured Headaches + thyroid nodules both lobes + right side neck sweilling extending into collarbone +right thyroid pain and upper and lower jaw pain + both swollen salivary glands + right side 1 swollen lymph node + right eye and ears pain + blurred vision + mild chest pains + right facial pressure feeling + lethargy + fainting + swallowing difficulty + night sweats + palpitations + dry skin + excessive thirst

Continuing with present symptoms October 2021 increasing chest pains along collarbone and underneath + swelling above right and left breast + sore breasts (surgical menopause) + palpable abnormality under right breast + unexplained fluctuating hyperthyroidism. Double vision an increased blurrinesscin right eye. Right side facial swelling continues. Brain mri no contrast showed partially empty sella. Sella turica was normal 8 months ago.

REPLY
@maut

Hx: blood pressure. Left parietal mini stroke. RCVC disorder.

Symptoms: First year and 8 months endured Headaches + thyroid nodules both lobes + right side neck sweilling extending into collarbone +right thyroid pain and upper and lower jaw pain + both swollen salivary glands + right side 1 swollen lymph node + right eye and ears pain + blurred vision + mild chest pains + right facial pressure feeling + lethargy + fainting + swallowing difficulty + night sweats + palpitations + dry skin + excessive thirst

Continuing with present symptoms October 2021 increasing chest pains along collarbone and underneath + swelling above right and left breast + sore breasts (surgical menopause) + palpable abnormality under right breast + unexplained fluctuating hyperthyroidism. Double vision an increased blurrinesscin right eye. Right side facial swelling continues. Brain mri no contrast showed partially empty sella. Sella turica was normal 8 months ago.

Jump to this post

My Apologies. Pray this info can be of help to someone experiencing similar issues with PES. Still undergoing tests and imaging.

REPLY
@aschmalzried

My son has been diagnosed with a large pituitary tumor. He has too much prolactin and very little testosterone. Every few days he has a raging fit. After it’s done he says he can feel his brain compress which causes the rage. He can’t stop it. And then he can feel the compression slowly decrease and he feels better. Is it possible that an empty Stella can come and go? His mri’s don’t show one, but it makes sense that it would be one when he describes it.

Jump to this post

@aschmalzried So sorry your family is experiencing this upsetting condition. I too have a feeling like my brain is compressed and overheated. It makes you feel easily agitated bc of the palpitations, dizziness m, paint and anxiety it creates. Definitely a slight personality change.

REPLY
@maut

Hx: blood pressure. Left parietal mini stroke. RCVC disorder.

Symptoms: First year and 8 months endured Headaches + thyroid nodules both lobes + right side neck sweilling extending into collarbone +right thyroid pain and upper and lower jaw pain + both swollen salivary glands + right side 1 swollen lymph node + right eye and ears pain + blurred vision + mild chest pains + right facial pressure feeling + lethargy + fainting + swallowing difficulty + night sweats + palpitations + dry skin + excessive thirst

Continuing with present symptoms October 2021 increasing chest pains along collarbone and underneath + swelling above right and left breast + sore breasts (surgical menopause) + palpable abnormality under right breast + unexplained fluctuating hyperthyroidism. Double vision an increased blurrinesscin right eye. Right side facial swelling continues. Brain mri no contrast showed partially empty sella. Sella turica was normal 8 months ago.

Jump to this post

Hello @maut and welcome to Mayo Clinic Connect. Thank you for sharing your history with your symptoms and experience. In terms of your day-to-day, can you share how you are coping with all of these symptoms and what would be of particular interest to connect with other members on?

REPLY

@amandajro Thank you for welcoming me. These headaches are particularly horrible. For the last week they have been continuous with sudden lightening intensities.

Currently using diet, light yoga (avoiding sudden movement and head postures), medical marijuana and started extra Tylenol to help with intensity. My face has slight numbness and tingling on 1 side. I’m sleeping on the left side due to pressure in my cheek and jaw area.

I’m using lightly colored glasses to help with the sunlight. Naps or lying down helps too. Decreasing anything stressful and avoiding high sodium intake. Eye pain increases with reading or screen brightness so I rest my eyes and put devices on night mode.

Currently waiting on neuro dr to receive my report from new scans I have completed w/ a possible dx of Optical myasthenia gravis added in addition to PES. I hope to shed light on this subject and help others who are similarly trying to cope and discover source of debilitating illness.

REPLY
@jmb73

I also was diagnosed with empty sella and just got diagnosed with Hashimoto's disease. This was from a ct scan of a lump near my clavicle. No one can figure out the lump but the ct showed a "right thyroid lobe fullness" beneath the lump. My PC's office called and said to get an ultrasound of my thyroid and blood work. My THC is normal 2.4 on a range of 1-4. All my life I have been tested for thyroid because every female in my family has thyroid. But my THC has always been a 1. Does anyone have a similar diagnosis and could it be related to my empty sella? I saw a neurologist 2 years ago and he said not to worry about my empty sella! My neurosurgeon is treating a meningioma (I had Gamma surgery in 2019) and discovered it and said to watch for symptoms. Any advice would be helpful. Thanks.

Jump to this post

@jmb73 I have a colloid cyst on brain- also high prolactin. I’ve had thyroid tests at doctor visits which are normal. I did a thyroid test through online Everlywell, which is more thorough. TSH, T3 and T4 normal but TPO is very high indicating Hashomito. Have to wait til January to see endocrinologist. Primary doctor doesn’t deal with autoimmune disorders. Any input on Hashomito would be helpful.
Can’t wait to see endocrinologist!

REPLY
@jwillits8

@jmb73 I have a colloid cyst on brain- also high prolactin. I’ve had thyroid tests at doctor visits which are normal. I did a thyroid test through online Everlywell, which is more thorough. TSH, T3 and T4 normal but TPO is very high indicating Hashomito. Have to wait til January to see endocrinologist. Primary doctor doesn’t deal with autoimmune disorders. Any input on Hashomito would be helpful.
Can’t wait to see endocrinologist!

Jump to this post

Hi, My niece has hashimoto's and is doing really well. She ran more tests and said I don't have it- weird huh? It's a bummer that you have to wait until Jan. I hope all goes well. Please keep in touch.
Joan

REPLY
@jmb73

Hi, My niece has hashimoto's and is doing really well. She ran more tests and said I don't have it- weird huh? It's a bummer that you have to wait until Jan. I hope all goes well. Please keep in touch.
Joan

Jump to this post

@jmb73 thanks for reply
I will keep in touch

REPLY

I got a concussion & was sent to a neurologist due to headaches, dizziness, roaring sound in my head (not ears), hot flashes, chill/low temp, vision issue, sudden onset crying/sadness, no ambition/drive & more. Neurologist says it’s migraines. Only headaches I get are sinus which meds handle fine. MRI shows Empty Sella/flattened & slightly small pituitary gland. I stopped having menopausal symptoms 2018ish but it seems like they are back with vengeance. I’m not saying it can’t be migraines, it may be both but the dr (I waited 6 mths to see) is set on migraines & has prescribed meds I’m afraid may mask symptoms.

REPLY
Please sign in or register to post a reply.