Family and friends,
First and foremost, Marty and I want to say how blessed we feel to have such wonderful family and friends who love and support us and want to know how he is doing. Thank you for your prayers, love and concern.
This last week has been full of ups and downs. It has definitely had its fair share of tears. It has been hectic to say the least, preparing for the day of surgery, and we can only imagine what it will be like after surgery. A friend introduced us to posthope.org recently, a site where families with medical issues can share information with loved ones in a convenient setting. Our hope is that this outlet will keep our loved ones informed throughout this process in a way that is not overwhelming to us.
Marty was diagnosed with Chiari Malformation Type 1. I'm sure many of you have never heard of Chiari. We hadn't either. For those of you unfamiliar, from the Mayo Clinic's site:
Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward
Through the Mayo site and our neurosurgeons, we have learned a lot about Chiari. The condition is particularly concerning because the tonsils at the bottom of Marty's brain are inside of the spinal column where only the spinal cord should be. This can cause cysts in the spinal column as well. Additionally, the brain is pressed up against the skull and is therefore not surrounded by cerebral fluid, the substance in the brain that provides a protective cushion, helping to prevent the brain from injury.
We learned from Marty's neurosurgeon that his particular Chiari is severe and needs to be operated on quickly. If left untreated, Marty eventually would be paralyzed from the neck down. The tonsils on the bottom of his brain are so far extended into his spinal column that symptoms have come on strong and progressed quickly. A couple of weeks ago, Marty had a severe headache that wouldn't go away. A week after that, he started having vision loss coupled with neck and back pain. Now, he is experiencing neuropathy, fatigue and pain all over.
Next week, on Friday, April 8th, Marty will go to Shawnee Mission Medical Center in Kansas City for neurosurgery. This will include a sub-occipital craniotomy (breaking and reconstructing his skull to enlarge it), C1 laminectomy (shaving off as much of his C1 vertebra as they can to make more room for the brain tonsils) and duralplasty (closing the incision around the newly formed skull). While in surgery, they will remove any cysts that have formed on Marty's spinal cord due to the Chiari and try to lift the brain as much as possible in the newly formed skull all while paying very close attention to the nerves and being as delicate as possible to prevent paralysis.
Although this has come as a shock to our little family, we are trying to look towards the positive. He was diagnosed before suffering any paralysis, for which we feel very fortunate. He has a very confidant and skilled neurosurgeon who performs around six of these surgeries a year (doesn't seem like many, but considering it is such a rare diagnosis...). He has loving and supportive friends and family. He has two little boys who think their Daddy is the BEST Daddy, and when Marty isn't feeling well, they give him extra hugs and kisses and make him smile!
We are counting our blessings, and we have a lot of them!
Thank you for all of your prayers and well wishes. Please keep them coming! Your support means the world to our family!
Marty, Lori, Christian and Rylan