Empty Sella Syndrome

Does anyone else have this?

https://en.wikipedia.org/wiki/Empty_sella_syndrome

...is where the pituitary gland shrinks or becomes flattened, filling the sella turcica with cerebrospinal fluid on imaging instead of the normal pituitary.ESS can be found in the diagnostic workup of pituitary disorders, or as an incidental finding when imaging the brain

Any physicians I queried dismissed it as benign. But - quelle surprise - my faith in medicine to accurately diagnosis, has been shaken.

 

Yes! My brain MRI showed a flattened, fat pituitary, and while my brain specialist didn't mention Empty Sella, she did say that the finding must be significant, bc she had never seen a radiologist make note of it on a report.

Thank you for bringing this to my attention.

ETA: how is it benign if as in the wiki article it can cause loss of pituitary function, intracranial pressure, and intolerance to stress and infection.

 

I looked further and found that ES can also cause leakage of the csf through the nose. I have definitely had regular epsiodes of clear fluid leaking from the nose, though no way to know if it was csf.

http://care.american-rhinologic.org/csf_leaks

of course headaches, tinnitus and blurry vision can have other causes, but I'm going to risk sounding crazy to my doctor next week and see what he has to say.

 

Yes; I described an MRI I had five years ago in this post on the other place. The radiologist had concluded that my scan was completely normal, but between looking at his notes and examining the scan itself, I saw three abnormalities characteristic of ME/CFS: Empty sella syndrome ("The sella turcica is partially empty"), a number of UBOs (unidentified bright objects), and significant cerebral volume loss.

I'm sure that most PWME who've had MRI scans have had these abnormalities ignored, if they were present. From my experience, and those of others, I really wonder how extensive these abnormalities are, and how useful they could be as a diagnostic tool for ME/CFS.

 

Yes, @zzz, I also had hyperintensities, atrophy "not expected for age of patient", and inflammation, with the cerebellum pressing on the brain stem.
It's frustrating and ironic that it's the exhausted brain damaged patient that then has to chase analysis/treatment after such findings. I found this out almost a year ago and sound of crickets bc I'm too exhausted and cognitively challenged to know what the next steps are, if there are any.

What a ridiculous medical system.

I'm just glad for this thread bc I have a GP appt soon and will bring it up rather than giving up, like I had done.
Unfortunately in my area there is a terrible dearth of good neurologists. Even the doctors acknowledge this. My brain specialist is in another state and I just consult with her over the phone, which I guess is better than nothing.

 

Think I have this probably from birth
It may be fairly common and benign as long as there is enough left it sends out nessassary signals

 

I had an MRI of my pituitary and was told the report said it looked completely normal. With this new information, just relayed, I will pick up a DVD copy, and take it to another specialist. I am hypopituitary, and never really understood why.

Thank you everyone!!!!

 

Maybe it’s worth a S4ME poll to see who else suffers from known pituitary issues?

 

I wondered the same thing too, but more specifically used to define one subset of ME. I am defective in one other ways, for example I have a funky PTH receptor. So maybe I might span across 2 different subsets?

Power to the Patient! Perhaps S4ME will define the first ME subset?

 

Given the pituitary gland is the size of a pea, it’s amazingly responsible for a lot of functions.

 

No idea is this would be helpful, but found some more information.

https://radiopaedia.org/articles/pituitary-gland

 

Why has most research, besides Hyde, been on everything BUT the brain.

We have brain damage and nobody cares.

I mean, pretty much every ME patient has HPA axis problems. H and P are in the brain.
Yet HPA Axis is becoming shorthand for functional which has become shorthand for "psychosomatic".

I am SO OVER this. I don't have mental or physical energy, money, patience, or health insurance for trying to be my own doctor/detective/advocate.

We have brain damage and nobody cares.

 

I am sorry. It’s frustrating, I agree, ME is not glamourous. Please try to hang in there. We are openly taking about this, which is a good first step. Meanwhile, I will try to find someone that does care.

 

I have this.

 

Thanks @MErmaid That's an awesome resource.

From https://radiopaedia.org/articles/empty-sella

Treatment and prognosis
As an isolated finding, they do not require treatment and have little clinical significance.

It is interesting to note that when an empty sella is seen in the context of idiopathic intracranial hypertension, successful treatment of the condition has been reported to result in resolution of the empty sella, with the pituitary regaining a larger more normal size 2.

 

I don't know so much about this. Do you have any information about how I can check on my MRI scan about this for myself? I will never find someone to do that for me.

 

At this point in time medical science has not figured out what it is that we have.

 

Primary empty sella syndrome is found in up to 35% of the population, according to this paper, although intriguingly is 5 times more common in females.

 

After 30+ years of not trying very hard.

 

I thought one reason for empty sella was Sheehan's Syndrome, which can only affect women :

https://en.wikipedia.org/wiki/Sheehan's_syndrome