Friday, February 17, 2017

I Might Be Sick

Gah...more tests are back and it's not looking good.  I'm a little sick to my stomach actually.  I'm not sure if it's because I am officially conditioned to have a sudden drop in blood pressure when I open my email and read, "New results posted in MyChart" or if the news I read is the cause for my discomfort.

I haven't heard from our doctor yet to put all this together but here are the facts so far...

No signs of MS- Hallelujah!


She has what is called a Partially Empty Sella which is a flattened pituitary gland.  This is not good.  It happens due to chronic, increased intracranial pressure or atrophy.  It can be a primary problem or secondary.  They also noted a suspicious area, 'likely an arachnoid cyst but the mass could not be seen properly.'

She also has a prominent arachnoid granulation on the left side, which can be mistaken for a deep vein thrombosis! (Maybe the cause of the slowing on the left side of her brain). It can also be mistaken for Arterior Venous Malformations like she has in her lungs and around her heart.  Yet, she has granulomas all over her poor body too!  Either way...this is not promising news.

None of it is.  I feel sickened by this.

So many things are starting to make sense to me...Without a fully functioning, healthy pituitary gland you have thyroid issues, pigmentation issues of the skin, it controls an anti diuretic hormone to prevent dehydration, all female hormones, the hormones that keep us from getting depressed etc, growth hormones.

Shelbie's thyroid was non-functioning by age 5.  She has vitiligo- patches of white on her skin where there is no pigmentation.  I can't even count the number of times she was hospitalized as a baby and toddler because of dehydration.  Always!  So often, I was being questioned about not feeding her. She's a full 8" shorter than the rest of us! The feelings she gets every day of burning up from the inside?  AND...the girl had a full on menstrual cycle when she was just two weeks old!  The doctors told me it was because I had too much estrogen when I was pregnant.  I'm calling BS on that! Maybe it's all due to this pituitary problem.

The Arachnoid Granulation solidifies the stroke/chronic stroke theory a little more than it did last week or even last year.  If it's AVM's, then that means they are spreading!  If it is a true Arachnoid Granulation, then that can leak cerebral spinal fluid into her venous system and even leak out of her nose.  Then my brain starts wondering if her runny, constant nose and pressure in her face is due to CSF leaking!

The flattened Pituitary is also a strong argument to do more testing for Chiari Malformation, the same thing Samuel has.  And...a strong argument to get Sam going on his brain MRI's.  I just wonder if this is going to end up being the same in all the kids.  We haven't even started dealing with Spencer's brain issues.

Incidentally, my cousin had brain surgery last year to decompress her brain because of Chiari's.

I have asked about Chiari's a hundred times in the past year and they brush me off but now we have evidence that it is more likely.  If Shelbie doesn't have Chiari's , I will words.

Oh gosh...this feels so overwhelming.  We are in for a crazy ride.  I can feel it.  I can see things in my life changing to accommodate what's coming next.  I just know it.

Heaven help this little family of mine.

Remember when all I wished for were seizures?  This is why.  It's never the 'easy' thing that everyone seems to know least more than they know about empty Sella!  Sheesh.


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