Wednesday, November 2, 2011

Team (Mo)nica

I have prayed about sharing the details of my own diagnoses and treatment with everyone in this forum.  There are all kinds of privacy regulations that rightly try to protect our personal medical information.  This blog flies in the face of the very good reasons behind those policies.  I have not shared our journey this far without considering the risks of being so vulnerable with my daughter's information, our family struggles emotionally, spiritually and financially and now my own life altering health issues.  When Danica's little head became crooked and months later was diagnosed with Chiari, a condition I had never even heard of before, it was the internet that connected me to research but most importantly people who had walked in similar places and were willing to help me fight for my daughter.  Since I began documenting here so many have googled "Chiari" or "Atlas Assimilation" and through the wonders of search engines and God's providence they have landed here.  If you have survived something like this you realize how unique each story is and how much it matters if only to the one next person who can be helped or given some hope. 

Many of you have written asking in almost disbelief about my surgery.  It is amazing to think I will be having a suboccipital brain decompression, reduction of basilar invagination and cranio cervical fusion in less than three weeks.  I wish I could explain all the diagnoses I received, but I cannot really.  I joke I could practically be a neurosurgeon at this point, but the truth is the combination of conditions I have is a messy melting pot spelling eventual disaster.  For some reason only known to God my symptoms have snowballed the past months into some very scary times.  Thankfully, I had all this knowledge from Danica's diagnoses and treatment and a lot of gut instinct and my friend, Pam, a woman who has a road right next to mine who kept whispering to me to find help. 

The emotions of our family now and the raw reality of what we are racing into is for another time and post.  I have not fully let myself go there quite yet, because I am laying here in bed with calendars and paperwork and lists and trying to take care of details that no one else can or would even know to.  In the back of my mind I worry I don't have advance directives and a living will and wonder how anyone would know what song I want at my funeral if I don't tell them. 

As I type this my shoulder pops in and out of joint.  I feel so much pressure from the back of my skull into my head I want it to explode just to stop the pain for a minute.  If I move my neck the bones literally make a crunching sound.  This is all stemming from Ehlers-Danlos Syndrome, a genetic connective tissue disorder.  For over ten years I have been told I had severe fibromyalgia.  In my heart I always knew something else was wrong.  It was not just widespread pain in flares.  It was like my body was imploding some days.  I would tell Dan over and over, "There is something REALLY wrong with me."   EDS relates to almost all my other issues because our connective tissue holds EVERYTHING in place.  When it's loosey goosey things get dicey especially around your brain and spinal cord. 

This is a picture of my cervical spine in a lateral position.  Looks pretty good right?  The C1 is covering the C2 55mm.
Now I'm going to show you my cervical spine when rotated to the side.  YIKES.  In the most extreme turn my C2 is only covered 13mm.  You can imagine what is happening to my brainstem any time I move my neck.
I do not plan to post my MRIs here, but needless to say, there are quite a few neurological results up and down my spine because of the compression of my brain stem and spinal cord.  I have a syrinx in my lumbar spine.  I also have imaging, symptoms and other tests that confirm I have a tethered spinal cord.  Surgery for this would be next spring sometime once I heal and can access how many symptoms remain after fixing this critical issue.  I also have Chiari in certain positions and will have my brain decompressed.  Because my skull and cervical bones are moving around in flexion and extension and rotation an entirely new picture of my cerebellar tonsils, brain stem and spinal cord emerge.  These are scans that most neurosurgeons would never order but paint the real picture.  People have also been asking why I need to go to a surgeon in Maryland.  There are really only a few surgeons in the United States that will agree to decompress and fuse EDS patients.  God most decidedly led me to Dr. Henderson.  He does not participate with insurance.  Thankfully the hospital is considered out of state, in network, so many of the services required will be covered.  The most expensive part of the surgery, the surgeon, will not.  He is asking for a large down payment to perform the surgery and an agreement for monthly payments.  We are moving forward.  God will make a way. 

Dan recycled the Team Danica shirt my friend, Kim, had made last summer to get a little laugh out of me.  Thank you for sticking with us and praying to the God who is able to do exceeding, abundantly above all we could ask or think.

1 comment:

  1. I am praying for you and your family. We received the EDS diagnosis last fall for my son. And I hate it...for him, for you, for anyone. It seriously sucks. We continue to take one day at a time, one step at a time...sometimes one moment at a time. I've asked God "why" thousands of times and some days He gives a glimpse of hope. I've also found a great deal of comfort in Sarah Young's "Jesus Calling." Regardless, I will continue to pray for healing, comfort and peace.