Wednesday, November 16, 2011

Nuts and bolts in layman's terms

I'm trying to keep my rollercoaster of emotions private and not open a floodgate of pain and fear.  I know many of you have been checking here waiting for a "nuts and bolts" explanation of my surgery happening Monday.  I often speak in neurosurgery lingo now.  This has been our world for so long.  It just all makes sense to us.  I understand it's mostly foreign to you.  If you have emailed or facebooked me I am sorry to not reply.  I have not had the strength to build my own "PR" campaign.  And by "PR" I mean prayer and public relations.  Smile.  So, please pray and ask someone else to pray too.  There are so many needs, and I am too broken and tired to say them out loud.  God knows, and He will be faithful. 

There are several other ladies who had or are having a similar surgery to mine with Dr. Henderson this week, and the explanation of one of their friends describing the condition and process was so good I am going to borrow from it.

I have been suffering for over a decade and have finally been diagnosed with Ehlers Danlos Syndrome, Chiari malformation, basilar invagination, cranio-cervical instability, a syrinx in my spinal cord and probable tethered spinal cord.  The past months I have struggled to get out of bed.  The pressure in my head due to low lying cerebellar tonsils has caused painful and debilitating neurological symptoms and increased wide spread pain. 

The surgery will be complex and and take about 4 hours.  The hope is it will help to slow or stop the progression of symptoms from some of these conditions and improve my quality of life overall.  I will have a suboccipital decompression, reduction of basilar invagination and cranio cervical fusion from the occiput to at least the c-2 using ribs which will be harvested from my back during the surgery. 

In layman terms, the lower portion of the base of the skull will be cut away and the outer tissue removed so the cerebellar tonsils (brain) will now have room. A titanium plate will be put over the skull to cover what what was removed. Then titanium rods will be placed one to the left and one to the right of the vertebrae from the occipital plate to at least the c-2. Rib bone will be removed from behind the shoulder blade and will be shaped to fit between the rods to fuse the area to vertebrae permanently to give stability in the neck to hold up the head. (The instability is caused by EDS.)

Yes, I will have the back of my head shaved.  Yes, I will have a long incision and scar on the back of my head and neck.  I will wear a more restrictive collar/brace coming out of surgery and then hopefully be downgraded to my Aspen after while.  Yes, having the ribs harvested will be one of the most painful parts of this surgery.  Yes, there are many risks and complications that can arise.  We have walked this road with our precious Danica.  Her light leads my way down this dark road.

Dan and I will leave for Maryland on Sunday morning.  We plan to stop in Hagerstown to get a hug from my sister Rochelle and her husband and have lunch.  Sunday evening we will settle into a hotel just a few miles from Doctors Community Hospital in Lanham, MD, where my surgery will take place the next day, Monday, November 21st.  Right now I am scheduled to be there at 11 am and for my surgery to begin at 1 pm.  Please pray for timing and circumstances to work towards this end.  I get very low blood sugar and cannot imagine not having anything at all to eat or drink from midnight until 1 pm the next day.  I know my anxiety will build and my strength will be all but gone by afternoon.   

We can speculate about recovery and time in Maryland before being cleared to come home, but we know these things are all fluid and so I am not holding expectations but leaving all that to God.  The soonest I would be allowed to travel is Tuesday, November 29th.  I will need to return to Maryland for a 6 week followup.

Please pray for us these next few days left together as a family.  Please pray for my Dan and Delaney and Danica and their individual fears about what is about to happen.  Please pray for my surgeon to have health and strength and some good rest over the weekend leading up to the surgery.  Please pray for my parents as my dad is still recovering from his lower spinal fusion and they will be responsible for the girls while we are away  Please pray for our financial needs.  We have paid a small part of the requested down payment thanks to donations from Grace Designs Photography's fundraiser in Septemeber, a donation from the dear parents of a childhood friend and my parent's help.  My sister-in-law who works for Marriott has gotten us a very good rate for our at least eight night stay in the hotel there.  I will most likely be released from the hospital on Thanksgiving Day or Friday and then stay in the hotel until I can see the surgeon again early the next week. 

Lastly,  Please pray for my physical suffering and most of all for my heart. 

I read this quote by John Bunyan last night.  It speaks to fusion and salvation.  It comforts me.  Believing that sometimes the deepest wounds create the sweetest healing bearing the most fruit. 

"Conversion is not the smooth, easy-going process some men seem to think.  It is wounding work, of course, this breaking of hearts, but without wounding, there is no saving . . . Where there is grafting there is a cutting, the scion must be let in with a wound; to stick it onto the outside or tie it on with a string would be of no use.  Heart must be set to heart and back to back, or there will be no sap from root to branch, and this I say, must be done by a wound." 

In layman's terms, this hurts in the deepest place something can, but it also has the hope of saving my life.  I'm all in.


  1. we continue to prayer and ask others. We love your fam so very much, and only wish we could do more! We praise God even in our sadness, knowing that someday these old shells will fall away, and we will rejoice with Him in Heaven! So much love! Melinda

  2. Dearest Monica,
    You know you are being lifted up to the Lord who adores you, by so many,many,many faithful brothers and sisters. And please know that a day will not pass in the next many months ahead, that you are not in my prayers. Much love,

    Carol Crabtree