Before I continue, let me attempt to explain the complex anatomy of the Chiari Malformation. To start, my brain is a little too large for my head and spills into my spine leaving a complete blockage of cerebral tonsils. Meaning our very important Cerebrospinal Fluid barely travels beyond my neck causing an umbrella of life debilitating pain and symptoms; from nausea/vomiting, blindness, paralysis, weakness of muscles (most days I can barely walk or do a simple chore), weight gain, dizziness and just plethora of discomfort.
Early fall, during an eye exam, Intracranial pressure causing weaken vision and stress in my left eye was discovered. The Optometrist believed the problem was urgent enough to share with my neurologist. That same day I received a call from said Neuro urging me schedule spinal tap also known as a Lumbar Puncture, although I spoke against it and questioned “could this pressure be from the Chiari?”.
A Month later the appointment day is here and due to extensive research/Chiari suffers recommending against it I was very anxious. Knowing of the risk, I prepped for the procedure and informed nurses and doctor my diagnosis. Thankfully the doctor nodded his head and asked me about the images. Several moments pass and after reviewing my MRIs I’m told my cerebral tonsils are basically blocked and herniation was actually up 18mm; mind you my neurosurgeon misread and told me it was only about 7mm. Basically this second opinion (who specializes in neuro) not only confirmed the severity but corrected the measurement of the herniation (how much my brain is offset from my spine) and decided against the lumbar puncture. If I had gone through with the procedure I could’ve been hospitalized with complications.
For months I have felt both my neurologist and neurosurgeon haven’t listened to many of my concerns. I understand the rarity of the disease can easily mislead professionals with lack of information. Therefore I decided to no longer continue services with that team and in search of specialist/facility with proper bed side manner and simple consideration CM expereince.
As many as you know, our darling Keshia must undergo brain surgery and continue testing for any undiscovered diseases. Ailments caused by this condition have unfortunately made working in a traditional workforce very difficult; causing her unemployment since August.
On top of this rattling news, she must also now undergo finding ways to pay for this.
She would never create one of these for herself, but anything will help her! If you know Kesh, you know she deserves to have some of this weight lifted. Anything helps! Please consider donating, or sharing this campaign! Thank you!
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