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?