Empty Sella Syndrome

I had an MRI done recently for an ear issue (which ended up showing nothing).. they did end up finding an empty sella though. On my report from the MRI it states this finding can be seen in patients with raised intracranial pressure or endocrinopathy? I am waiting on an appointment with neurology to discuss the findings and what steps need to be taken. In the meantime, I am looking for any information that you can provide.. please. Has anyone dealt with this? If it is due to intracranial pressure, what will be done? Am I going to be okay? I'm shaken up over this as I am young and have four amazing children who depend on me. Thank you in advance.

Hi @amomma4, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion group about Empty Sella Syndrome. I did this so you can meet others who have this condition like @menville @jmb73 @cshrubb @sdsavage @cherrylistic @dankshin and more. Click VIEW & REPLY to read through past posts.

I find the information about empty sella syndrome on the NORD site to be excellent https://rarediseases.org/rare-diseases/empty-sella-syndrome/

It is upsetting to read the results of testing before being able to meet with a specialist. Waiting for an appointment with neurology must be tough. Most patients with ESS don't need treatment if they are not experiencing symptoms. Are you experiencing any symptoms? Has your ear issue been resolved?

@colleenyoung Thank you for moving my post to the correct area. I look forward to being able to educate myself better and learn more by meeting and speaking to others who have empty sella as well. I have an appointment with neurology this upcoming Wednesday to go over the next steps.

I hope you've found some answers since 2013. I recently got this diagnosis as the doctor ordered an MRI for my migraines. I'm just learning about it but there isn't a lot of information. I think that crowdsourcing details about symptoms will help us all.

I was recently diagnosed with Partially Empty Sella. Headaches have increased in frequency and severity over the past decade and no one thought to look to see if there may be a cause other than "stress." They started me on Emgality which seems to help, but I do still have them and it effects one eye in particular. Have also found that after 20 years of 1x night hot flashes, I can have them several times a day and my body temperature can be a couple of degrees higher than normal on random days. I hope they know more about this syndrome and what it does to people.

Absolutely no idea what is causing many symptoms. Had a CT scan two years ago after an accident - mild concussion. No sign of anything irregular with pituitary gland. CT scan was done beginning of May as they are trying to figure out why I am so tired, pain in legs, hands and muscle weakness. They found that my sella around pituitary was empty and vastly different than two years ago. Many blood tests performed and waiting for urine results. My symptoms are major fatigue, getting "turned around" easily, pain and stiffness in hands, pain in feet when getting out of bed in morning, horrible itchy hands (usually pads on palm) and feet periodically (usually at night), can't find words, sometimes in a fog. I don't drink alcohol or soda, eat well - no fast food or preservative filled, dizziness but unlike vertigo. I take 15 mg. of adderall daily, 25 mg of pristiq daily, 10 mg of clonazepam in morning and 20 mg. at night and one Vitamin B-12. I just turned 58, 5'2, 120 lbs, very small boned and had a partial hysterectomy at 37 leaving one ovary. She's definitely dead! Any advise would be great. My hands bother me the most. It almost feels like my skin is going to split open when I try to make a tight fist (particular on right side). I'm so tired of hearing "we do not know what to do." I don't want anything wrong but I sure would like to know how to fix whatever is going on and get some answers. Thanks all.

@jwlzb
Some of your symptoms are consistent with the Klonopin your taking. Your on a high dose, higher than the maximum recommended amount. I’m not supprised your fatigued have dizziness and muscle weekness. I’m supprised your not having memory and balance problems too.
I’m curious why you’re taking an Amphetamine and a Depressant?
Take care,
Jake

Hello @jwlzb and welcome to Mayo Clinic Connect, a community of members looking for and providing support to one another throughout their healthcare journey. Thank you for joining this discussion. I can see @jakedduck1 has replied to you with some of his thoughts and want to give you a chance to respond to his question.

My apologies! I WOULD be asleep 24 hours daily if I took that much!! It’s 0.5 mg. I am super sensitive to meds so did a blood test to determine what works best and in what amount. I take Adderall in a very small dose for ADD and hoping to wean off Pristiq. 🙏🏻 Our daughter is getting her Master’s in Nutritional Therapy for many reasons but the biggest reason is because she’s tired of the unsustainable diets and quick (terrible) weight loss products people are abusing their bodies with to he thin, then gain it back + more. Hard on your heart and your mental health. She doesn’t think people should have to give up everything forever, just moderate but avoid as many preservatives as possible. I’m drinking homemade tea once a day with ginger, turmeric, hot peppers and lemon juice from three lemons. Makes enough to last a good week for me. I love it but my husband would rather be inflamed!! 😉

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.