Saturday, July 13, 2013

Alfred is in the house! (Er, sphenoid sinus?)

I had a dynamic 3T pituitary MRI over a year ago.  The report contained a large paragraph going into lots of detail about everything that was "normal" in my head.  Then at the end there was one somewhat indiscernible sentence about a blob in my sphenoid sinus.  I'll quote:  "There is focal mucosal thickening versus inflammatory ball of debris, retention cyst or polyp involving the posterior wall of the sphenoid sinus and also the roof of the sinus underlying the sellar floor anteriorly."

A google search of those terms brought back nothing understandable or related.  At the time, I could barely identify what a pituitary looked like on an MRI, and I didn't know how to work the program that of the MRI disc to even be able to switch from one picture to the next within each series of "slices."  I didn't even know what questions to ask, and the report said nothing of it's size, either, so when my Endo said that the MRI had come out clear, I have a sinking suspicion that he read the report and didn't look over the scans himself.  (Apparently he only does that prior to a full appointment, and not prior to a "drive by" call or email.)  I assumed he had looked at it and deemed the report accurate and my scans "clean" of problems. 

Well, fast forward to this week.  I've learned a lot more about cushings, which symptoms indicate highs vs. lows, testing protocol, and yes, even where a pituitary is on an MRI.  I've also made a number of "Cushie" friends online, one of whom LOVES reading MRI's the way I love reading fetal ultrasounds.  LOL!  She had her pituitary "fileted" about 6 weeks ago after a long battle to get herself diagnosed with Cushing's Disease, including 3 MRI's of her own.  She's also a computer gal, and took me on a guided tour of my head.  Yes, there IS a brain in there!

The polyp/cyst (a blob, really) is VERY obvious.  It is in the sphenoid sinus directly below and against the sella turcica that holds the pituitary gland.  It quite literally looks like I have a second pituitary that my actual pituitary gland is sitting on top of!  It also appears as though it is causing my pituitary to sit off-kilter, possibly skewing my pituitary stalk (the bundle of nerves and blood supply to the pituitary). 

When viewed pre-contrast, it is the same grey color of the pituitary gland.  In the scans taken during contrast uptake (ie, WHILE it is being injected), this blob lights up like a lightbulb --bright white and fairly uniform.  Meaning that it has blood supply, and possibly that it is more fluid than solid.  The "after" contrast pictures, the pituitary looks more white and the blob has returned to a mostly grey color again.  It is very obvious and quite striking! 

I've emailed my endocrinologist about the MRI.  It may or may not be causing my problems, but the chances sure seem good!  I will likely need a repeat MRI again anyway (which my endo has already suggested) since it has been over a year since my first.  I'm hoping to get this months' lab results first, then maybe schedule a telephone appointment with him to go over the MRI and labs, and make plans for what to do next.

I've done about 7 labs this week, and will see how many more "high" days I get next week.  Hopefully the results start coming back more conclusive with more highs results than normal ones.  I'm a bit worried that NORD is going to be shocked at the number of tests I'm pumping out in a month, but I think I've about got this down to a science (tracking symptoms and testing on highs) so hopefully it will be fast and furious on the testing front instead of doing a few tests a month for months on end. 

We don't know what this blob is.  We are (Britton and I), hopeful that it is indeed separated from the pituitary thus making pituitary damage from surgery far less of a risk, but also hoping it is the cause of the problem (causing pituitary compression) and can now be quickly identified as such and removed.  It doesn't act/look quite like a micro or macroadenoma, so we're hopeful it really is a "polyp" of some kind and not anything tumor-related that might grow back again. 

I've named my blob "Alfred," and regardless of it's accuracy, he will be blamed for everything until future notice!  ☺  I won't welcome you, Alfred, because you are certainly an uninvited guest, but I'm glad to know "it is all in my head" after all!  I hope you haven't put on much weight this past year, and expect you to start paying me some rent, ya loafer... 


1 comment:

  1. What a relief it must be to at least now know there really is something wrong. Two years ago i had a colonoscopy to see if they could see anything wrong with the intestines to explain the pain. Take us to last week when I was going to go to a clinical trial study and when they had gotten my results form the colonoscopy, they told me I couldn't be in the study because I had colitis. I knew nothing about this and the gastroenterologist had decided it wasn't important and couldn't possibly be the reason for the pain so he told me there wasn't anything he could do, yet if I had actually been told two years ago I could have saved myself a lot of pain because there are things you can do for it. There's no medication, but there are natural things that can be done for it. With you it was noted right down at the bottom. Now I can start getting myself better and hopefully you can as well.

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