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Empty Sella..Eval by NeuroSurgeon

Discussion in 'General Treatment' started by Zensational, Sep 17, 2012.

  1. Zensational

    Zensational

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    Orlando, Florida
    I have been diagnosed with partially Empty Sella which means my pituitary isn't functioning properly. When I first contracted EBV 28 years ago I was falling and went to neuro who said my pituitary was enlarged. He discounted it saying it was probably hormonal. Now it is flat. I believe it is caused by the infections. I am going to a Neurosurgeon on Thursday to have them look at my MRI to see if there is a tumor. Has anyone else experienced this? Any suggestions?
    MishMash and AFCFS like this.
  2. Enid

    Enid Senior Member

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    UK
    I remember discussion of this some time ago Zensational but can't immediately find here. How good to have a Neurosurgeon look at your MRI scan. My Neurologist finding brain "high signal changes" (what and where I'm none the wiser) simply asked me to find someone who knew about ME and he would release his findings. The involvement of the pituitary (endocrine problems) is well known in ME. Good luck with your visit. I also believe in infection.
    AFCFS likes this.
  3. AFCFS

    AFCFS Senior Member

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    NC
    I just had a neurosurgeon pick this out also. When he first showed it to me on the MRI he said "This is what is left of your pituitary." Then went on to explain pressure and current or past inflammation that had apparently taken out, or flattened, my pituitary - now empty sella.

    I had posted this here: The slacker inside - wonder how much of this has to do with CFS? (http://forums.phoenixrising.me/inde...-much-of-this-has-to-do-with-cfs.20607/page-3). MishMash mentioned Cort had commented on it. Here are two threads on it:

    1) Empty Sella Syndrome and CFS: A patient study (http://forums.phoenixrising.me/index.php?threads/empty-sella-syndrome-and-cfs-a-patient-study.8616/#post-162321)

    2) Article: Empty Sella Syndrome and CFS: A patient study (http://forums.phoenixrising.me/inde...-sella-syndrome-and-cfs-a-patient-study.8631/)

    And a blog, Empty Sella Syndrome: A Proposed Patient Study (http://forums.phoenixrising.me/index.php?entries/empty-sella-syndrome-a-proposed-patient-study.582/)

    From post dates, it looks like these were pretty active between Feb 2011 and Feb 2012, but then kind of left hanging. Of course, as human nature applies, I have more of an interest in it now that it applies to me.

    Empy Sella is also mentioned in and scattered through other threads (http://forums.phoenixrising.me/index.php?search/2846238/&q=empty sella&o=date).

    Would like to hear if you made any progress beyond diagnosis. For me, now looking at more deatiled and specific MRI with additional spinal X-rays.
  4. Zensational

    Zensational

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    Orlando, Florida
    Thanks, I will check these threads out.
  5. Xandoff

    Xandoff Michael

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    Northern Vermont
    I accidently discovered that I had a partial empty sella when my Testosterone was dangerously low and would not come back up even with shots. My Doctor (regular GP who knows nothing of ME CFS) said it was nothing. Later I found a real ME CFS Doctor who prescribed a biodentical form or testosterone cream that works great. They did an MRI because they were looking for a pituitary tumor. (none found) I believe that I have spinal fluid in my brain that flattens my pituitarty gland because of some type of post viral illness that is involved in this illness. I would not expect to find any good research on this. I did at a lot back in 2010. Nothing. Partial Empty Sella is typically found in women. Zensational, do you have chronic pain? I do and I think it is related to how my brain regulates pain.
  6. Zensational

    Zensational

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    Orlando, Florida
    I too accidentally discovered that I had partially empty sella when I was having migraines and had an MRI to rule out a tumor. Pituitary tumors can be so small that they are not detectable on MRI. None found though. So when I first became ill with CFS/ME, then referred to as "yuppie flu", I was having motor problems so off to the neurologist. He found an enlarged pituitary. Didn't have a clue why.
    My conclusion is that the infection EBV, caused the enlargement of the pituitary gland and now it is an empty sella. Yes I do have muscle pain. My best thinking is that the pituitary regulates growth hormone, which I have very little of. Growth hormone is what is needed to get stage 4 sleep. I don't get nearly enough of that either. Sooo, I think that's why I expereince the pain.
    I take valerian, passiflora and a small dose of melatonin, 1mg. No caffeine, no excitement late in evening. Breathing and muscle relaxation exercises.
    I am unable to tolerate any of the sleep drugs.
    Hope this helps. Let me know how you are doing.
  7. Xandoff

    Xandoff Michael

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    Northern Vermont
    Zensational,
    Yes I have EBV, Cytomeglavirus, Chlamidia Pneumonae and many more virus. I was an asthmatic kid with 65 allergies, this weights your immune system to Th-2 which is what most of us with ME CFS have. My Th-1 immune system that fights viruses is dormant and my Th-2 that fifghts bacteria is going 10000 miles an hour. I gave up caffieine a long time ago. Our HPA axis that regulates so much is haywire. I think something post viral caused my empty sellla. I suspect I have low growth hormone because of this as well. I have not had a cold in eight years! Never thought I would miss a cold. Good luck Zensational. Although I was born in Coral Gables I live in the Northeast. Cold is an added burden with this illness. Bye!

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