Empty Sella Syndrome

Newly Diagnosed with Empty Sella Syndrome. Just wondering if anyone else is experiencing headaches when coughing: I have a consistent headache occasionally, however a lot of times if I cough..or bend over to pick something up, I experience a headache that feels like pressure.

I started pursuing persistent eye socket pain on the left side in I think it was early 2017, I’ve had so many MRIs. I have pulsatile tinnitus constantly, which has gotten worse starting in the beginning of the 2000s. MRIs don’t reveal anything of concern there except of course, partially empty sella. I also have brain lesions and one spinal cord lesions that they just keep watching to see if they change. One more new symptom and I guess they would start treating me for MS. I’ve had two neck surgeries to deal with the neck issues lower down (pain, radiculopathy) They don’t want to deal with anything higher up in my neck unless absolutely necessary. I have asked repeatedly about the PES, and been told the same thing everyone else has, that it’s no big deal. I’ve had my pituitary hormones & slight goiter checked, everything is always in the ridiculously normal range, but I am very overweight in the middle, and I just look somewhat hypothyroid. (thyroid issues run in my family and my 30 yr old daughter has Hashimotos).

I am on gabapentin, ajovy,relpax, Celebrex and pain medication (which I try to take rarely, I want to avoid being in the medication overuse syndrome, which I have experienced before). have to be constantly careful about what I eat because of the headaches that are induced. I can’t handle much salt at all, nor can I eat a large meal, such as Holiday dinners or I pay for a day or two with a screaming tension headache which then triggers migraines. The tinnitus is absolutely unstoppable but since I’ve been living with it for so long, nobody seems to care. I feel like I have about 18 dentist drills all screaming inside my head at slightly different pitches, plus there is the sound of a large semi truck idling outside my house all the time it seems, that low rumble inside my head. oh yes, and the blurry vision that comes and goes and the difficulty trying to get progressives that I can stand to wear for more than an hour. I have at times gone for months with that problem and it’s in both eyes (even with one eye ) that I get the diplopia. my optic nerves appear inflamed on MRI but they don’t show inflammation to my optometrist with a dilated exam. I have seen a neuroopthalmologist as well. Nothing. Just a lot of the symptoms of PES without the clinical findings. I have fallen out of trees and horses. When I was younger, we never looked into anything with my frequent headaches, which started fairly young and became chronic in 2017. We just coped and figured it was on the “normal” spectrum. Nobody knew anything back then.

So, What justifies surgery to see if this empty sella is at the root of a lot of my symptoms? I have read literature that suggests the constant headaches are an indicator for surgery and others that say it’s not. I’m so confused and sick of taking medication all the time and having to walk that fine line of taking enough medication to manage the pain and taking too much to where I induce a different kind of pain. I haven’t even thought about going back to work now that my kids are adults because I would be useless. Thankfully, my husband’s work & insurance allows me to do that but I dread what will happen if God forbid anything happens to him. I’m only 53 but I feel as useful as somebody in a nursing home often feels.

Yes. Empty cella syndrome can cause damage to the optic nerve from extra CSF. If you begin to have blurred vision or even not you should go to an ophthalmologist who can check for nerve damage. There are meds that can help with the headaches also caused by the increased pressure in the csf.

Hi,
My imaging reports indicate that I have white matter lesions, partially empty sella, and CSF leak; however, my neurologist doesn’t seem too familiar with either and has not given me a formal diagnosis. My first visit with my neurologist was for epilepsy and atypical seizures. Instead of researching my medical history and asking questions, he insisted that my epilepsy and seizure symptoms were due to mental health. They are not. I started monitoring my blood glucose despite not being diabetic or non-diabetic. I cycle between hyperglycemia and hypoglycemia all day. There may be a relationship between most symptoms that I’m hoping to find and contribute to by joining this discussion to.

I would recommend an endocrinologist. Mine is monitoring my empty sella.
Also, I have never heard of seizures being caused by mental health. Perhaps a second opinion would be good.
Good luck.

Hi, i wanted to understand this better hence i'm here. Back in March suddenly one day my ears started ringing, and wouldn't stop. I went to numerous ENTs and they really couldn't figure out the specific cause, one gave me some steroids to fix it but it made things worse, and at the end I was just referred to Neurologist cause none of them could figure out what was going on. Then i ended up with multiple seizures and landed in the hospital, am diagnosed with Tuberculosis Meningitis (TBM) and on medication for that, and after i was discharged my ear ringing also stoppe, until it came back again in July and hasn't stopped since, my neuro gave me some meds for that ringing also but it hasn't worked, im on painkillers as well cause of the overall pain, and difficulty functioning overall, i already have been diagnosed with depression, anxiety, CPTSD, probable BPD, and on Neurodivergent spectrum,
In the few MRIs ive had since the seizure i've noticed this Partial Empty Stella, along with Sinusitis. I wasn't really in the state to actually understand or figure out on my what this is. But since the ringing won't stop, my headaches just keep getting worse, my whole body hurts overall, movements also cause the headache and feet pain to also increase, i stumbled upon this whole rabbit hole of what it could mean.
BTW i'm AMAB person in my late 20's and based in india. My headaches, my weirdly low testosterones, my eye sight has been getting worse since a couple of ears, my weight has always been shifting, though so far my thyroid levels has been in the range.
I'm aware there are far too many things going on in my life that can cause all of this, like alot of stress, i'm already on meds for seizures, ATT, mood stabilizers, pain killers(tho i'm still on a good 4 most of the time and then it goes up from there), i also have gall bladder stones, diagnosed back in 2019 (but my parents didn't get the surgery done for i dont even know why? and now i have cut them off for variety of reasons) mental health issues and the list goes on lol. But i really want to understand and figure so i guess i have something that helps me to know what's actually going on? i'm going to see my neuro today and then give you all an update ig? also if you have any advice on how to talk to my neuro to take it seriously and not just brush it off, i'd really appreciate it.

Hi, I have been having issues with dizziness/vertigo, headaches, vision issues, neck pain, balance issues, and numbness in my hands and feet. I have been diagnosed with Hashimotos thyroiditus and was just diagnosed with a colloid cyst of the 3rd ventricular by CT Scan. They ordered an MRI and also found a partially empty sella. My endocrinologist just ordered hormone test and my prolactin is high and I also am producing breast milk. I’m 45 and had my cervix and uterus removed at the age of 28 because of a severe case of adnomyosis. My human growth hormone is low and I’m waiting on the rest of the results to come in right now. My daughter was diagnosed with a pituitary adenoma when she was 8 and I am now wondering if this is somehow hereditary? My grandmother had severe osteoporosis and scoliosis and my mother had systemic and discoid lupus. My mother died of a heart attack at 41 and my grandmother died at 61 of what they think was bone cancer. I can’t help but wonder if this is all related somehow? Any info would be so helpful! Thank you

Hello @mandy79c I wanted to welcome you to Connect. It sounds like you have a lot on your plate with doctors and tests. Is there a reason you would have numbness in your hands and feet? That makes me think about spine issues because I'm a spine patient and had surgery for spinal cord compression in my neck and that can cause symptoms of pain and numbness in arms and legs even if the issues are only in the cervical spine.

I've had Hashimoto's too, and I say "had' because now I don't test positive for it anymore. I think this was related to old dental work and failing root canals including old silver amalgam fillings that contained mercury. Since all of that has been removed, and I have no metal in my body, the Hashimoto's cleared up. I still take desiccated pig thyroid hormones because of damage done by Hashimoto's and it all seems to be stable.

How soon will you find out recommendations for care from your specialists?

I honestly don’t know why I have the numbness right now. I read that it could be from the colloid cyst but the neurologist doesn’t believe that is the case. I have to do 6 weeks of physical therapy before my insurance company will approve another MRI of my neck. The neurologist will be checking for Chiari Malformation. As of right now, that is all I know. I don’t have any old fillings. I’ve been having symptoms of thyroid issues for the past 10 years but it didn’t show up on my bloodwork until 2 years ago when I was diagnosed finally. I forgot to mention that I also have had tachycardia for the last 5 years. My resting heart rate is in the 130’s and I’m constantly fatigued. I am on diltiazem to control it but it is never below 110. I have also had chronic sinusitis for the last 10 years and have lost my sense of smell completely. I see my endocrinologist for the hormone issues on November 5. Hopefully will get some answers.

@mandy79c Is your physical therapist working on your neck? I ask that because I know that my heart rate gets faster when my neck is tight. I am not on any heart medication and also have allergies and asthma that affect heart rate if I am congested. I am always trying to stretch out tight muscles. I'm a surgical patient with a C5/C6 fusion, and I also have Thoracic Outlet Syndrome that makes my neck and shoulders tight which is worse on one side.