Sharon's Brain Surgery

Aloha mai kākou!

On a vacation in CA back in 2014 I had my first experience with symptoms that are connected to my current condition. I had said something to my, now husband, that came out as gibberish. I laughed when he was told me that what I said didn't make sense, I couldn't believe it. Immediately after my laugh a sudden headpain came on that was accompanied by dizziness, tingling in my fingers, and momentary brain fog. I was officially worried. Shortly after returning from that trip I seeked medical advice. After a series of tests run by my doctor back home in Hawai‘i nothing was found.

Now 6yrs later my husband and 2yr old daughter are living in Texas. Prior to COVID shut down we made the difficult decision to move millions of miles away from home and our ‘ohana to get ahead financially. We had formulated a financial plan that should only have taken us 5yrs here in Texas to become debt free, start saving for our daughters future, and our forever home. Due to my current health status we're looking at years longer than we had originally planned. We've spent over $6,000 out of pocket of which $1,200 has applied to our $4,500 deductible. Once the deductible is met we then have an additional $6,000 out of pocket maximum. We are working with insurance to apply more of the $6,000 we've already spent toward the deductible, but no guarantees they will. 

In 2017 I was part of CrossFit and had to stop after 1yr due to sharp surging pain that travelled from the center of my upper back to my chest which would nearly knock the breathe out of me. I took a break and consulted my doctor who said that it was probably just inflammation and had me take anti-inflammatories for a month. The pain persisted and began to travel down my left arm causing numbness and itching sensations when fabrics would brush up against my arm. The sharp pain would come on when I jump or run, so I stopped. It would come on when I sneezed, nothing I could do about that but wait for the pain to come and go. I was sent to physical therapy when my doctor couldn't find any cause. I was told that I had some nerve agitation because of a weak rotator cuff. Again, nothing could be found.
 
After months of doctor visits here in Texas prompted by the return of those painful headpains, dizziness, loss of balance, numbness in my arms and hand, and tingling of my tounge and lips I have been diagnosed with Chiari Malformation Type I (CMI). The ENT that I saw, thinking it may have something to do with my inner ear, ordered an MRI of the brain after a series of other tests and coincidentally discovered the CMI.
This is a birth defect that doesn't show symptoms until teenage years into the 30's. It causes symptoms such as the ones I've been suffering and much, much more due to the cerebellar tonsels sagging down into the spinal canal and blocking the flow of cerebral spinal fluid (CSF). This blockage can cause a build up of CSF in the spine (syrinx) which, if left untreated can cause further damage to the nerves, muscles, reflexes, bodily functions, and spinal structure. I have been told that I have a syrinx and my Neurosurgeon has recommended that I get a Chiari Decompression surgery done to clear up the syrinx, to live a relatively normal life, and avoid sudden death. This is a risky surgery as most brain surgeries are. They will need to remove a portion of my skull permanently to relieve the pressure and give my brain some space.  This space should improve CSF circulation. 

While there is no cure of CMI and most patients still suffer some of their symptoms I have faith that this surgery will atleast clear up the syrinx and stop any further damage.

The surgery is scheduled for mid September and we are working tirelessly on researching, getting opinions, Operational logistics, as well as figuring out how to get support to have my mom come over and kōkua with my recovery.

Thank you for reading this lengthy bio. My ‘ohana appreciates anything that you can give to kōkua.
Mahalo nunui!