I’ve been a little absent more than usual. I have so much going on at home it’s been hard for me to focus.
I’ve mentioned briefly in previous blogs I have been having some health problems. I’ve avoided saying much details about them till we had more answers, well we have those.
Things have happened so quickly, yet ever so slowly when you are living in so much pain day to day. I’ll mention on a side note though that I would take this physical pain and health problems over mental health problems. Mental health is so hard! Not to mean what I’m dealing with now is easy but people can physically see it, they can’t see my mental battle. Sometimes people even act like depression or anxiety is even contagious.
Anyway, back to the point. I have been battling chronic pain due to Ehlers-Danlos Syndrome (EDS). It has caused instability in my head and neck. Craniocervical Instability (CCI), Anltoaxial Instability (AAI), and Subaxial Instability.
In English my head doesn’t sit or move properly on my cervical spine, also known as the neck. My neck when moved forward and back the discs slip and slide incorrectly. When I move it left to right it also slips and slides. My discs have compressed leaving them to grind as they move. It feels about as awesome as it sounds.
My EDS is the root cause of this. It is a condition in which I don’t have proper collagen in my ligaments. The ligaments dominantly are what hold us together. To make up for this my muscles have worked overtime my whole life to hold me together. Ultimately with all the stress my body has been under through pregnancies, injuries, and just life my neck muscles just couldn’t handle it anymore and gave out.
I have been living in a hard neck brace for 5 months, sleeping in it for the last 4 and even showering with it.
There are no cures for my conditions only ways to help give me best quality of life. For this reason after months of consulting Drs. and finding the best specialists we have decided to move forward with a head and neck fusion. It will be C0-T1. Basically attaching my head to my neck and my neck to the top of my spine. They will put rodes in my neck and screw it on to my skull and each disc. We will also be adding cadaver bone.
There are only a few specialist in the world to handle this large of a surgery. The one that accepted my case is in Barcelona Spain. Surgery will be April 6th. I always joke you can’t put a price on your quality of life but if you could it would be 80,000$. Unfortunately insurance doesn’t cover any of it. To pay for it we have sold our house, it will close in just a couple weeks. We are moving into a 1 bedroom apartment for now.
So we have been busy with showings, inspection, appraisal, packing, prepping for Spain, pre-op blood work and appointments. That combined with a brain that struggles to think straight writing blogs have been a bit difficult.
I’ve started a YouTube channel about my conditions, and to share my experience through surgery and recovery. I’m sure there will be a little break blogging while I’m in my initial recovery. I appreciate you being patient with me. I do love sharing my life with you here and hope to feel well enough to blog again quickly.