My Health Saga; Diagnosis Edition

Eleven months ago I woke up feeling sick.  After a week of feeling like I had a seriously bad cold I wrote on my Facebook page,

"Ok, Dr Facebook.  I am going on day 5 of being sick, and I am totally SICK of being sick!... Mostly I feel completely wiped out, with dizziness, and my head hurting.  Not in a horrible way, but a constant dull ache (maybe a pressure?) that hurts my eyes, and makes me a little nauseous."

It's almost comical to me now.  "... I am totally SICK of being sick!"  Oh Betsy... If you'd only known the road you had just started walking.  😒😜

Anyways, after eleven months of feeling more and more sick, dozens of Dr appointments, more tests than I care to count, and 4 (that's right, 4!) MRIs, I finally have a diagnosis.  Two, actually.  Apparently I have two rare diseases called Chiari, and Syringomyelia.  

In laymen's terms my brain is coming out of my skull (Chiari) and causing cysts filled with spinal fluid in my spine (Syringomyelia).  This can cause a myriad of symptoms, since it effects the central nervous system.  Some of which I have (eye pain, blurry vision with 20/20 vision, fatigue, weakness, dizziness, delay in vision, chest pain, back pain, severe headaches/migraines, and occasional numb arms...)  I actually wasn't having ANY headaches and my back felt just fine until I had a Lumbar Puncture as part of the testing to see if I had MS.  Come to find out, if you have Chiari, a Lumbar Puncture can make things worse.  *sigh*  Since the end of October I've had severe headaches, migraines, and bad back pain.  I can't sit, stand, or even lay in one position too long before my back is really hurting.  It makes me a bit ticked off at the Neurologist who ordered it.  He saw the syrinx and waved if off as nothing.  He saw the radiologist report that says I have Syringomyelia, and dismissed it.  But syrinxes are caused by Chiari most of the time!  At the very least he should have made sure I didn't have Chiari before going through with the Lumbar Puncture.  Now we just have to wait and hope that it resolves on it's own, and didn't cause permanent damage.  😡

The Dr I met with who discovered this (who wasn't my neurologist) isn't convinced I don't also have MS, but he says since all the tests are clear for now, we'll just wait to see if that manifests in the future.  For now, we focus on the Chiari and the Syringomyelia.  

Since I had never heard of these diseases before, I thought I'd write a blog post about it to share what I've learned so far with others in my life.

First, some pictures from my MRIs, showing the damage from the Syringomyelia, and a little info about what this disease is:

This is a side view of my T-spine.  The white line going up and down is the spinal fluid.  The grey line going up and down within that space is the spinal cord.  Toward the middle is a tiny line of white.  That shouldn't be there.  That is the spinal fluid inside the syrinx (or cyst).  It is about 3 vertebrae long.

This is a cross-section of my T-spine, looking down.  The white space in the bottom middle is the spinal fluid.  The dark grey dot in that white space is the spinal cord.  The little white dot in that grey space shouldn't be there.  That is the same spinal fluid inside the syrinx (or cyst) that is shown above, from a different angle.

Next, here is some info about Chiari, with my own MRI pictures:

The yellow line shows where my skull ends.  None of my brain should be below that yellow line.  The amount that is, has caused pressure, and at least one syrinx,  I believe there is another one showing on this MRI.  There are white dashes within the grey column going up and down (my spinal cord).  If you look at the cross section MRI (below) you see the same white dot in the spinal cord as the MRI of my T-spine.  That white dot doesn't appear on the rest of the pictures of the spinal column.  

This is a cross-section of my neck (a different view of the MRI above).  Right in the middle you can see a dark grey circle (my spinal cord).  In that grey circle there is a white dot, that shouldn't be there.  I believe that's another syrinx (cyst filled with spinal fluid), but I haven't had that confirmed by a Dr.  Other sections of my spinal cord are purely grey with no white dots.  This white dot appears right where the white lines are on the MRI above.  Just my observation.

I've learned that size doesn't matter.  You can google "chiari" and see some really long herniations.  Some people with long herniations don't have any symptoms, and some people with hardly any at all have bad symptoms.

This one's harder to read.  It says, "Chiari decompression surgery consists of removing a portion of skull, C-1 in the neck and applying a dura patch in the covering of the brain called the dura.  Some people have surgery without the dura patch & some people may have C-2 removed as well.  This is necessary to make more room for the cerebellum."

So, after so much time struggling to figure out why I'm feeling sick, I still have lots of questions, but it's starting to sink in what's going on.  As it sinks in it has been a hard thing to swallow.  This isn't temporary.  There is no cure, and very little treatment.  This isn't going away.  If anything, it will probably get worse.  It's not life-threatening, but it IS life-altering.  This is heavy, and I'm mourning.

The plan moving forward is essentially pain management, and monitoring the Chiari and the syrinxes.  I'll probably need new MRIs at least once a year to monitor the progress.  If things get too bad I'll need surgery.  In the meantime I'm trying a few pain medications, and homeopathic solutions, too.  I'll be doing some alterations to my diet, too, but there isn't a whole lot a diet can do to put the brain back where it should be.   

I know that God doesn't give us more than we can handle, so I know I can handle this.  Eventually.  Right now I'm taking the counsel in the scripture to "Mourn with those who mourn."  I'm allowed to mourn.  Christ mourned for the loss of his friend, even though he knew that he was about to raise him from the dead.  There is a period of time to mourn, and a time to get up and move on.  It is extremely hard to suddenly have my life altered.  I have so many things I've had to stop doing, that I love to do.  I love being social, and active, and productive, but my body has been in so much pain and so weak this year that I haven't been able to do as much as I'd like to.  Finding out that's not going to change is hard. 

But I will move on.  I will be happy.  I will figure things out. 


Eventually.