I need to make this brief as it is late and I have a migraine. I need to stop avoiding this space and to just put it here, which makes it more real somehow.
Last Thursday I finally saw a neurosurgeon. I say finally because it was about 10 months since I heard about chiari malformation and started researching it. I had MRIs done in early summer but the issues were missed and the neurologist’s office refused to give them a second reading. It took at least four schedule appointments with the neurosurgeon and changing my insurance before I could see her.
It then took her 10 minutes to pronounce a diagnosis and a course of treatment.
That is when it felt like the world was expanding and contracting. I had no air and too much at the same time. I had storms of words in my brain and could barely make sentences.
I didn’t make it through the checkout process before I started crying. Then I went to a bathroom and sobbed until someone else needed to use it. I walked though the rain across the hospital campus to my car so I could cry without being forced to look at people. I have cried every day since.
I have Chiari Malformation type 1 and the suggested treatment is called decompression surgery. It might not reverse my symptoms, but it should decrease my pain and halt progression.
Primarily, it is scary as fuck.
It is also validating. Finally someone has figured out what is wrong with me! I am not making it up!
There is a huge list of symptoms associated with Chiari. I also likely have Ehlers Danlos syndrome, there are many types, but because I am over the age of 25 there are no doctors in Michigan who will take me on and diagnose me.
Here is what I deal with.
- chronic pain in hands and feet (had arthritis ruled out)
- neck pain
- intracranial hypertension
- pressure headaches
- nystagmus when looking down
- sometimes one leg starts to give out when I walk
- orthostatic hypotension
- numb patches on my back
- bladder issues (I even had tests done on my bladder, so fucking not fun, and 6 weeks of pelvic floor therapy)
- popping in my back
- heart palpitations
- low blood pressure
- brain fog
- word recall (aphasia)
- sensitivity to sounds, smells, and light
- pain behind my eyes
- eyelid spasms
- pressure in my ears
- running water sound in my ears
- burning sensations in my body
- slurred speech
- cold hands and feet
- gas and bloating
- food sensitivities (this has to do with a nerve that gets impacted)
- muscle weakness
- inability to sweat
- excessive thirst
- swollen lymph nodes
I’m really good at faking it, hiding my symptoms, and not letting people know how much pain I am in. It has been getting harder to hide from myself and this doctor called me out on it. I do not have pain free days. This tremor is new and my symptoms are getting worse.
I am so scared. But my only choice is to keep going.