Poll: Do you have a partially empty sella on your brain MRI?

[Bowser]

You might already know that idiopathic intracranial hypertension (IIH) could be a major cause of ME/CFS in at least one large segment of the ME/CFS afflicted population.

This paper by Dr. Higgins is one of the major sources of this hypothesis:

https://pubmed.ncbi.nlm.nih.gov/28735654/

One of the primary indicators of IIH is a partially empty sella, which I believe is easily identified by most radiologists on a standard brain MRI report. Unfortunately, this isn't treated with any great concern and there is no further investigation in most cases.

Considering the above, I created this poll to discover what percentage of ME/CFS have a partially empty sella on their MRI, which can then be compared to the incidence in the normal population.

 

[Hip]

An old thread on empty sella here.

 

[Hipsman]

My brain MRI conclusion said "no abnormalities". A few good doctors also looked at it and saw nothing special.

 

[Pyrrhus]

Great poll!

As you probably know, a "partially empty sella turcica" simply means that part of your pituitary gland is missing.

I know there are a few people here on Phoenix Rising with a completely empty sella (almost no pituitary gland).
I think some of those are on hormone replacement therapy, but I don't recall the details...

More discussions might be found in our "Hormones: Hypothalamus/Pituitary/Adrenal (HPA) Axis, etc." forum:
https://forums.phoenixrising.me/forums/hormones.96/

 

[Bowser]

Despite the limited sample size (9 votes), I am quite surprised by the results so far (2-7 yes-no).

It suggests that if you do have empty sella, perhaps you're part of a unique ME/CFS subset and should look for solutions that relieve IIH.

This is what I'm doing so far. I am investigating TOS (thoracic outlet syndrome) as a cause of my IIH, after ruling out CCI/AAI and venous stenosis with reasonable confidence.

I am going to bump this thread once more so more people can vote.

If you do have empty sella, please reply to this thread and think about if you have any unique and subtle IIH symptoms, like unique headaches, or a feeling of heaviness of the head.

 

[heapsreal]

Empty sella is probably why many cfsers replace some or all of their hormones. I did alot of this before discovering the empty sella. Dhea was low, morning cortisol low normal, vasopressin we was probably low but a tricky hormone to test as it varies from moment to moment but a 24 urine volume test indicated diabetes insipidus (10Litres), free testosterone has been low for decades but drs here ignore this and only go by total testosterone. When my total testosterone got to 8, 10-28 being normal, and my Dr said it was fine, i knew i had to sort it myself and having higher T levels helps in lots of ways especially aches and pains. When functioning higher and exercising, recovery is better.
Id like to test my growth hormone/igf1 levels but if low i have no way of replacing it as the cost is huge.

Empy sella can cause chronic headaches but they cant confirm that with individuals so you get diagnosed with migraines. When i go through a bad episode of a headache its not unusual to have my bp shoot up to 170/110, either its from pain or increased intracranial pressure. So treating the pain helps and extra lyrica can lower my bp or a small dose of a beta blocker when required.

The neurologist i saw was hopeless, it was more a power trip thing for her. So i just work with my gp and muddle our way through it.

 

[Bowser]

Empty sella is probably why many cfsers replace some or all of their hormones. I did alot of this before discovering the empty sella. Dhea was low, morning cortisol low normal, vasopressin we was probably low but a tricky hormone to test as it varies from moment to moment but a 24 urine volume test indicated diabetes insipidus (10Litres), free testosterone has been low for decades but drs here ignore this and only go by total testosterone. When my total testosterone got to 8, 10-28 being normal, and my Dr said it was fine, i knew i had to sort it myself and having higher T levels helps in lots of ways especially aches and pains. When functioning higher and exercising, recovery is better.
Id like to test my growth hormone/igf1 levels but if low i have no way of replacing it as the cost is huge.

Empy sella can cause chronic headaches but they cant confirm that with individuals so you get diagnosed with migraines. When i go through a bad episode of a headache its not unusual to have my bp shoot up to 170/110, either its from pain or increased intracranial pressure. So treating the pain helps and extra lyrica can lower my bp or a small dose of a beta blocker when required.

The neurologist i saw was hopeless, it was more a power trip thing for her. So i just work with my gp and muddle our way through it.

I too had and probably still have low T. Compression of pituitary gland causing hormone deficiencies is definitely a logical explanation.

If you don’t have POTS, it may be worth experimenting with a low dose of Diamox (250mg or less) to see if it relieves your symptoms. If you have POTS then don’t take it, as Diamox is contraindicated in POTS.

 

[lenora]

Hi @Pyrrhus.....I'm sure I have empty sella BUT at my age, I'm exhausted from chasing leads to what may or may not be. True, the doctors should recognize this but the fact is that we are the masters of our own illnesses, especially now that the age of the internet has arrived. Even before that, you were expected to go to the Medical Library and amass as much info as possible.

Is it ever OK to say, "I'm tired and enough is enough?" To be honest, there is just way too much to keep up with, especially as we age....and the fact is that many of you will age better than I have. Perhaps if I hadn't been an earlier case, things may have been different. I have no way of knowing.

Do I feel cheated? Absolutely not.....the doctors did as much as they could during a period of extreme questioning on both sides. I did my part, was expected to. even. After all, what is a 15-25 min. appt. for us? If we don't do some homework beforehand, an appt. can soon disappear into nothing but questions with no answers. So like it or not, really inform yourself of as much about this illness as possible. It's for everyone's benefit. Yours, Lenora.

 

[Da Funk]

MRI? Chance would be a fine thing. I've always been refused one, so gave up asking. Sorry if I'm hijacking your thread slightly, but am I typical in the UK?

 

[eddyrms97]

Despite the limited sample size (9 votes), I am quite surprised by the results so far (2-7 yes-no).

It suggests that if you do have empty sella, perhaps you're part of a unique ME/CFS subset and should look for solutions that relieve IIH.

This is what I'm doing so far. I am investigating TOS (thoracic outlet syndrome) as a cause of my IIH, after ruling out CCI/AAI and venous stenosis with reasonable confidence.

I am going to bump this thread once more so more people can vote.

If you do have empty sella, please reply to this thread and think about if you have any unique and subtle IIH symptoms, like unique headaches, or a feeling of heaviness of the head.

What is IIH and how would thoracic outlet syndrome be related to this or ME?

 

[eddyrms97]

What is IIH and how would thoracic outlet syndrome be related to this or ME?

I see. I've read the study and it could impair cerebral blood flow just not sure how.

 

[waif]

Nice, I was about to make this thread. Just brief bg on me (I have nerve damage in my hands so you guys will have to excuse lazy typing)

I have heds. 8/9 Beighton and MVP, hyperadrenergic pots attacking my diastolic BP much more than my hr, hypovolemic pots. I didn't realize how bad it was bc I was essentially waterboarding myself for over a decade and developed hyponatremia for a long time. I pee every hour and it's usually like water

in 2010 I injured my brachial plexus very very badly multiple times. I didn't know I had heds at the time. Developed whiplash like sx and thoracic outlet type symptoms. My hands became permanently gloved during this period and never returned to normal

I literally went to a billion neuros. I had to go to a neurosurgeon to even get a brain MRI. And even then they didn't order it with contrast. Finally I found a good neuro in 2022 who ordered a bunch of tests with contrast. even then everything was "normal"...but I said I wanted to be sure I don't have a csf leak so he forwarded my images to a duke trained radiologist. ONLY THEN did I learn I have ESS. this is after going to a gazillion neuros and complaining about headaches and hypertension and having to lie down all day to self medicate. I'm not sure if I'm fully or partial. And nobody has told me to get my hormones checked! I'm doing it myself bc my excessive thirst is
concerning

Also I had a blood patch for csf leak. Did nothing. And I had my opening csf pressure checked. It was right in the middle. I know technically I need the icp bolt test but I don't want an invasive test. I think people are vastly overrating cci surgery. In the heds communities I didn't get a great impression from people who had the surgery unless it's so bad you're literally not breathing

 

[waif]

Also Im nervous hedsers might think bc Jennifer breas surgery helped her, it would help them. She has stated she's zero hypermobile, never ever hypermobile. I am. Its very obviously genetic on my dad's side.

You literally have to sign forms when seeing Dr Bolognese or Henderson saying you cannot write anything negative about them on the internet

Edit: also I'm in the southeast. I feel like if I were up north I would've seen better neuros

 

[Tiffyshea]

I have a partially empty sella. I figured it out myself years ago after reading about it in Jen Brea's blog and looking at pictures of it online compared to my own MRI.

I had seen two neurosurgeons and two neurologists who all said my MRI was normal. The last neurologist I saw I even asked about it.

I finally saw a new neurosurgeon who specializes in this kind of stuff and she said that I do indeed have a partially empty sella.

I'm planning on writing a letter to these other neuro docs to let them know that they missed it, because how else are we going to change medicine? They need to flippin' know what they are looking at.

At the time I posted it on fb with photos comparing empty to full. I'm attaching that post for anyone that wants to see what it looks like. You have to figure it out yourself these days. Our doctors aren't trained to help us.

 

[Hip]

I'm planning on writing a letter to these other neuro docs to let them know that they missed it, because how else are we going to change medicine? They need to flippin' know what they are looking at.

Empty sella is found in 20% of the general population, according to this article, that may be why your doctors considered your MRI to be normal.

And this article says most people with empty sella have no symptoms; but a small percentage have pituitary hormone deficiencies, such as hypothyroidism, and may need hormone replacement.

Though interestingly, this study found a strong correlation between empty sella and psychiatric disorders. Although it may not be empty sella itself which causes the mental health conditions, but some underlying disorder of the brain (like a viral brain infection) which causes both.

 

[heapsreal]

Empty sella is found in 20% of the general population, according to this article, that may be why your doctors considered your MRI to be normal.

I've read similar medical posts saying similar. But I wonder how accurate that is as most people get a brain mri for a reason like chronic headaches or some issue with the brain. So I don't know how they come up with 20% of the population have an empty Sella, as healthy people don't usually get brain mri's.
I don't think most drs know what to do with that information. Some drs will test your hormones, but if you have chronic headaches from it, there's not alot they can do. There's some medications that can help prevent the amount of headaches but headaches still happen.

I guess it's not conclusive enough for drs to diagnose or do much with empty Sella findings. It's another vague medical condition that is in the same basket as cfs

 

[GreenEdge]

I didn't vote because I don't know. However, last year I participated in an MRI study into ME/CFS, the published scientific paper can be found here.

Preview:

Subcortical and default mode network connectivity is impaired in myalgic encephalomyelitis/chronic fatigue syndrome​

Maira Inderyas 1*, Kiran Thapaliya 1, Sonya Marshall-Gradisnik 1, Markus Barth 1,2, Leighton Barnden 1

• 1. National Centre for Neuroimmunology and Emerging Diseases, Menzies Health Institute Queensland, Griffith University, Southport, QLD, Australia
• 2. School of Information Technology and Electrical Engineering, The University of Queensland, Brisbane, QLD, Australia

...
Conclusion
Our findings showed impaired functional connectivity (FC) in ME/CFS patients. We found complex connections, both stronger and reduced in ME/CFS patients compared to healthy controls (HCs). Furthermore, we also demonstrated that symptom severity scores of ME/CFS were associated with FC in diverse brain regions. Therefore, the widespread involvement of cortical regions and the ponto-cerebellar circuit is consistent with the symptomatology of ME/CFS. The results highlight and suggest possible ongoing changes in ME/CFS individuals, particularly in the pons and cerebellum areas, providing insights into the pathophysiology of altered cognition and disability in ME/CFS.

 

[Hip]

But I wonder how accurate that is as most people get a brain mri for a reason like chronic headaches or some issue with the brain. So I don't know how they come up with 20% of the population have an empty Sella, as healthy people don't usually get brain mri's.

That's true that you usually need a doctor to suspect something is wrong with you before you are given a brain MRI; but there are hundreds of different medical reasons why a brain MRI might be given, and you would not expect empty sella to be associated with more than a small percentage of those reasons.

 

[Rhonda]

Empty sella is found in 20% of the general population, according to this article, that may be why your doctors considered your MRI to be normal.

And this article says most people with empty sella have no symptoms; but a small percentage have pituitary hormone deficiencies, such as hypothyroidism, and may need hormone replacement.

Though interestingly, this study found a strong correlation between empty sella and psychiatric disorders. Although it may not be empty sella itself which causes the mental health conditions, but some underlying disorder of the brain (like a viral brain infection) which causes both.

Given that a large % of women w/ME have difficulty getting diagnosed bc so many drs diagnose them with mental illness instead, this strong correlation may not be psychiatric but misdiagnosis of psychiatric. I went through seven yrs of being told “it was all in my head” - depression, stress, anxiety.

 

[heapsreal]

Given that a large % of women w/ME have difficulty getting diagnosed bc so many drs diagnose them with mental illness instead, this strong correlation may not be psychiatric but misdiagnosis of psychiatric. I went through seven yrs of being told “it was all in my head” - depression, stress, anxiety.

The strange thing is, it is in our heads. The mri proves it lol. Although not the way drs think it is .