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Empty Sella Syndrome and CFS: A patient study

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Cort, Feb 10, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    Sella.jpg We propose a study to possibly characterize the first anatomical abnormality in CFS - empty sella. Adin B. suggested this study based on his MRI records showing that a filled sella early in the disorder and an empty sella later on. I know of another person who's has substantial sella abnormalities.

    The sella is a depression at the base of the skull that holds the pituitary gland - the master gland of the HPA axis.

    MRI's are used to characterize sella abnormalities. How could an empty sella been missed with all the MRI's ME/CFS patients have done? A small depression in the base of the skull, it's often simply not looked for. An empty sella (or empty sella syndrome ESS) does not always affect the individual's health but when it does it looks suspiciously like ME/CFS...We think of this as possibly one small piece of a complex CFS puzzle.Dr. Holtorf believes all the HPA axis problems in CFS lie 'higher' up in the axis; either the pituitary or the hypothalamus.

    Secondary Sella Syndrome - Some people have primary ESS - a developmental problem. We're interested in secondary ESS. Secondary ESS occurs when the pituitary gland regresses or basically disappears or gets pushed out of the cavity or shrinks in it after an injury, infection (?), radiation or some sort of pituitary gland dysfunction.

    Symptoms -
    Individuals with secondary ESS due to destruction of the pituitary gland have symptoms that reflect the loss of pituitary functions, such as the ceasing of menstrual periods, infertility, fatigue, and intolerance to stress and infection. (sound familiar?). Empty enlarged sella is also often combined with primary thyroid dysfunction, obesity and female preponderance.

    Some History

    Several things may cause it but!!!! it usually shows up one fairly distinct group of patients......and guess who those people are...


    Two very interesting facts
    - most are women and the abnormality usually presents itself in middle age..and there is an increased incidence of obesity. And then there are the symptoms....Take a closer look
    'Subtle endocrinological abnormalities' are generally a hallmark of CFS.


    Lab Tests


    Empty Sella Syndrome
    CFS - almost all of these have been found in some degree or the other in CFS

    Conclusion - we're not saying ESS causes CFS but if we can show that a higher than normal percentage of patient demonstrate ESS - then we're talking biomarker territory and a documented physical abnormality. We're committed to exploring this further and we will be asking around to see if there is a researcher who would be willing to look at patient MRI's..

    The Proposed Study


    Four questions:

    • Have you ever been diagnosed with Empty Sella Syndrome?
    • Do you have an MRI of your brain? (we need to figure our which views are best).
    • Do you have MRI's dating back to before you were ill or were taken very early in your illness?
    • If you have an MRI's would you be willing to allow a researcher to examine it/them?
    PM me if you're interested....

    Hip likes this.
  2. Cort

    Cort Phoenix Rising Founder

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    Looking around the web I came across this person

    This person - 49 year old female

  3. Lynn

    Lynn Senior Member

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    Nice article. My symptoms fit very well with this. I have just had a PET scan but no MRI.

    On another note, I thought you were joking. I read Sella to be slang for cellar. And I thought sure, I had lots of stuff in my sella (cellar) prior to diagnosis and now my sella is empty because I had to sell off all my possessions because of being broke with ME/CFS!

    Lynn
  4. Cort

    Cort Phoenix Rising Founder

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    You could have both empty Sella and empty Cellar syndrome...it could be both are synonymous with CFS :)
  5. Cort

    Cort Phoenix Rising Founder

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    Somebody just sent me this about the underrecognition of pituitary problems in the medical community
  6. Enid

    Enid Senior Member

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    Another very interesting article Cort - many thanks. Don't know what my own "high spots" in the brain meant but symptoms lwere the same and unable to lie on the back of the head. The only thing is no permanent damage as these are cleared now. Indicating something in the ME/CFS process though.
  7. urbantravels

    urbantravels disjecta membra

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    I don't understand what is being referred to - a proposed study? By whom? This looks like a bunch of cut and pasted material from somewhere else with no source(s) given.
  8. Cort

    Cort Phoenix Rising Founder

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    Actually almost everything up there is sourced. Except for a bit from wikipedia and this

    Look at the links and the study titles.....

    This is a proposed study by us...we are looking to see if there is more evidence of sella abnormalities. If we can gather enough evidence we'll try to find a researcher who to analyse the MRI's.
  9. spinkick

    spinkick

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    I have been diagnosed with ESS via MRI. Sent you PM
  10. Hip

    Hip Senior Member

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    This looks like a very worthwhile idea for a study, that ought to be conducted.

    On similar lines, one thing I have always wondered about is whether the sphenoid bone (the bone that separates the pituitary gland from the sphenoid sinus cavity) might be thinner in CFS patients, thereby conceivably allowing the toxins and inflammatory cytokines from chronic infections in the sphenoid sinus to affect pituitary function, and thus in turn affect the whole HPA axis.

    CFS is linked to persistent gastrointestinal/respiratory viruses like enteroviruses which are well adapted to colonizing the gastrointestinal/respiratory tract, including the mucous membranes of the sinus cavities.

    I think the skull bone material separating the sinus cavities from the brain is pretty thin in places anyway. So one might conjecture that cytokines and/or toxins from an ongoing sphenoid sinus infection might conceivably affect the brain and pituitary, leading to the symptoms of CFS. Also, a branch of the carotid artery passes directly through the sphenoid sinus area and then goes straight into the brain.

    There does seem to be a connection between chronic sinusitis and chronic fatigue syndrome, as it has been documented that people with chronic fatigue syndrome/symptoms and chronic sinusitis often experience substantial improvements in, or even near resolution of, their chronic fatigue after sinus surgery to resolve a sinus infection.

    See here:
    Sinus surgery clears up fatigue, too, study shows - White Coat Notes - Boston.com
    New Study Shows Sinus Surgery Can Improve Chronic Fatigue
    Sinus problems link to ME
    Chronic fatigue cured by nasal surgery


    Location of the sella turcica on MRI (see arrow):

    [​IMG] [​IMG]


    Location of the sella turcica (see turquoise coloring):
    The pituitary gland is housed within the sella turcica.
    The sphenoid sinus is the cavity just beneath the sella turcica.
    Could chronic infection in the sphenoid sinus cavity affect the pituitary gland?

    [​IMG]


    Sinus Cavities:

    [​IMG]
    WillowJ likes this.
  11. Nielk

    Nielk

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    I have constant sinus problems and had sinus surgery 4 years ago. everone was telling me how great I'm going to feel afterwards. I underwent the surgery which by the way is very painful and did not have one day of relief. when it finally healed, I was at the same point where I started.

    I was told later on by other doctors, mainly alternative practitioners that unless you take care of the pathoges that are causing the sinus problems, even if you have surgery to open up your sinuses, those pathogens will quickly block them again.

    I am strongly advising others to not consider this surgery lightly. Get second and thirs opinions before you embark on such a drastic step.
  12. Hip

    Hip Senior Member

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    I would think that surgery might be useful for people whose sinus infections are underpinned by narrow sinus ostia; but I myself prefer using supplements that calm the sinus infection.

    I often use:
    transdermal Epson salts (on my body, not the sinuses - this high dose of transdermal magnesium is good at clearing sinus infections).
    transdermal myrrh essential oil (5 to 10 drops, on the skin, of course diluted in a carrier oil).
    malic acid or malate supplements also work well.

    My CFS symptoms are noticeably reduced when my chronic sinusitis is kept in check by such supplements.
  13. Enid

    Enid Senior Member

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    This is a very interesting thread - thanks to you all. Fairly recently after years of (often) severe sinuitis my Dentist insisted on a course of high dose Amoxcillan following removal of 3 roots (crowns and some teeth were crumbling) due to infection discovered by X-Ray. The outcome was really quite astounding - sinuses cleared and GI problems improved enormously. Infection spread (bacterial) does seem to play a big role.
  14. Nielk

    Nielk

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    By the way, I had an MRI done a couple of years ago.
    My doctor said that the results were normal.
    When I read the report, it mentioned empty sella.
    I never thought anything of it. should I worry about it?
  15. Esther12

    Esther12 Senior Member

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    I had sinus problems all through my youth, and had some surgery to cut away part of my nasal passage (it didn't do any good). There was some study mentioned about CFS patients with narrow nasal passages having brain scans that indicated a sleep disorder, despite not having what would normally be classed as one (I think - I only read a pre-published abstract, and then forgot about it). Maybe I should try and dig that up again.

    No doctor has ever mentioned sinus problems in relation to CFS before... so many things can cause fatigue, that their no real impetus to find potential causes for different patients.
  16. PorkChop

    PorkChop

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    I found this forum and thread researching Empty Sella and while I have not been diagnosed with CFS, I seem to have a lot in common with the people here. I've always had nagging problems like being overweight, sinus issues (although no allergies), and fatigue/lack of motivation.

    About four years ago I started having sinus pain that eventually progressed into blinding pain. I first discussed this with my general practitioner, who gave me antibiotics, sprays, and recommended over the counter drugs. The antibiotics seemed to help but the problems would return in days.

    I went to an ENT specialist and he diagnosed me with a deviated septum and after about 9 months of trying different sprays, creams, and antibiotics he finally recommended surgery: septoplasty with turbinoplasty (straighten the septum, trim the turbinate). After a year I had only minor improvement and he suggested more surgery. I went to another ENT. He diagnosed me with the same: deviated septum. This second ENT had a totally different approach. He did a CAT scan and said that my problems were 100% structural defect and all the sprays, creams, antibiotics in the world would NOT fix my problemonly surgery would fix it. He couldnt explain why the first ENT failed to fix it, which I felt he was dancing around a potential malpractice accusation. However, people in his practice told me that they often do follow up work of other doctors that fail to do proper spetoplasties.

    The second surgeon also used a technique to open the passage to the sinus cavity that was always blocked--often referred to as sinuplasty. His technique was far less invasive than the first ENT and recovery was much easier. It helped dramatically! I sleep like never before. One night after this surgery I fell asleep and woke up looking at my clock with the shock that I had slept eight straight hours in the exact same position I fell asleep in and felt great! That has never happened before in my whole life.

    Heres a link to the practice, which Im not suggesting you must see this doctor--I'm sure there are plenty that use this approach:

    http://www.stewardhealth.org/St_Eli...ly_Invasive_Nasal_and_Sinus_Surgery_Institute

    I still have problems though. My CAT scan for the second surgery revealed an oddly shaped sinus and the Dr. ordered an MRI, which revealed I have an Emty Sella.

    I waited a couple months after the surgery and then went to a Endocronologist, who ordered bloodwork twice to confirm my pituitary gland is not functioning properly. I havent started treatment yet but hopefully Ill get some meds to help put my life back on track.

    In sum, it took me FOUR YEARS to find the right doctor to diagnose and properly fix my sinuses then find the empty sella. And the second ENT didnt even refer me to the Endohe just said I had empty sella and nothing more. I had to research ES on my own to learn I should see an Endo to check my pituitary gland functions.

    Sorry to ramble on, but I hope this helps someone. Take control of your own health. Keep perusing help. Dont be afraid to get second opinions, or more. Surgery CAN work to fix sinus problems.
  17. Nielk

    Nielk

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    Hi Porkchop,

    Welcome to this forum.
    We have a lot of things in common. Our sinus histories are almost identical, except that my second surgery did not resolve anything for me. I still have the same ongoing sinus infections and inflammations.
    My brain MRI also shows an anatomical empty sella. Does that always mean that it affects the pituitary gland?
  18. PorkChop

    PorkChop

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    Empty Sella does NOT always affect the pituitary gland. From what I read it seems to cause problems in about a quarter of cases (primary ES). So, if you are experiencing any symptoms I think it's definitely worth seeing an Endo. It's pretty simple, the Dr. did a simple physical and interview to investigate the common malfunctions then ordered some blood work. My results came back with a couple things high or low so I had the test done again to be sure it wasn't a fluke.

    Have you had a CAT scan of your sinuses? The first ENT didn't do a scan, which seems to be the old approach but woefully inadequate. The second ENT dr had a small CAT scan which was really easy to use. You just lean into it and it took just a minute to scan you head. On the CAT scan we actually see the congestion in the sinus cavity and also see that there wasn't a clear passage in which that sinus could drain. Subsequently he did the sinuplasty, with the balloon technique (see the link I posted). I still rinse my sinuses everyday with saline. Once summer comes and it's not so dry (I live in a cold weather climate), I'll probably stop with the rinses.

    I read another article (sorry i don't have the link) that talked about how in the 1980's dr's would only do sinus surgery if you had a serious malformation. Then in the 1990s it became more common but was still fairly crude--cutting out some tissue here and there--sometimes not enough and sometime too much, which is worse since you can't really put it back. And now today, this great ENT Dr. I had felt that the technique is perfected to the point where they will use the angioplasty like technique to open the passage without even cutting. My Dr. scoffed that there's a whole industry trying to treat the symptoms for people--with sprays, etc.--that can have their problem permanently fixed with proper surgery.

    Frankly, my sinuses aren't what I would call 100% better. I still have some dryness and discomfort maybe twice a month, but I used to have pain constantly, so it's a huge improvement. And I sleep so well now.

    I've also learned to manage the symptoms. I use "Ayr Saline" in my nose when it gets dry. Try and drink lots of water--and will drink even MORE water when drinking coffee or alcohol.

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