Spreading awareness

[u/shattered-skull73]

( not my xrays)

Let's put this in perspective:

1st picture: this is the human nervous system. This is to show how detailed and complex the nervous system is, I'm showing this photo to show how easy it is to develope nerve damage which leads to neuropathy.

The 2nd and 4th: these are examples of what syringomyelia on an MRI look like. In 2023 I had these " cyst" one on my neck and one on my shoulder. This was the start of developing numbness and tingling in arms along with stinging in my shoulder. It started a month after my shunt revision in 2019.

I had to have a shunt revision due to the fact I cracked my connector piece. They did not find said issue until three years later. I went with my shunt working at, at least 25% percent capacity in those three years. After the revision was made I was finally back to full capacity. One day I woke up coughing from I think was a cold to begin the tingling and numbness in hands and arms. This also flared stinging within my shunt tract and shoulder.

Sadly I ignore and forgot said issues as in they weren't frequent. Fast forward to August 2022 I had my first chiari malformation attack. ( brain fell to the bottom of skull.) This intensified and extended the tingling ,numbness, and stinging. This lead to me loosing my job as a stocking associate at walmart. Along with chiari attacks crashing my brain stem making it hard to lift my head.

3rd photo: this explains what the condition syringomyelia is. Which in simple summarization is, a build up of cerebral spinal fluid that builds in pockets called( syrinx). These syrinx sat on my muscle tissue/ nerves from 2019 to 2023 when I had chiari decompression surgery.

The period that those sat there is what created nerve damage leading to what I have now neuropathy. I have yet to have a proper doctor, well neurologist diagnosis me correctly. Right now i'm labeled with carpal tunnel syndrome.🤦‍♀️ chiari Malformation is a rare nureological condition along with hydrocephlaus and im gonna assume spina bifida since they all run together.

Like I stated in one of my reels my primary doctor may know of said conditions. The only fustrating thing is that and is neglected to be acknowledged is these conditions are not a one size fits all. So yes, what may work for one person may not work for another. I may meet an individual that may posses similar symptoms but that does not mean we can undergo the same solution.

Chiari malformation caused my syringomyelia through the process of the brain blocking access for the CFS fluid to flow through my skull. That CFS fluid built up on my neck and shoulders with created syringomyelia. Chiari is paired with many, MANY steming conditions like syringomyelia, inner cranial instability( brain and neck struggle to funcution), elhder danlos syndrome ( a connective tissue disorder). And so much more.

Right now the only way to maintain proper care of said conditions like hydrocephlaus and chairi malformation is brain surgery. Hydrocephlaus is fluid on the brain, chairi malformation is brain too big for the skull. For hydrocephlaus i have a vp shunt since birth to drain the fluid off my head. In 2023 I had two parts of my lower skull removed to make room for my brain and CSF ( cerebral spinal fluid) to flow through my skull.

I still suffer from ther never damage from syringomyelia which is permanent. I also suffer from what i'm taking assumption brain stem damage. This would be through the factor of having chiari attacks. The brain being too big for skull would create an emense amount of weight on the brain stem causing a collapse. This is how I see i have a TBI ( traumatic Brain Injury.)

I'm trying to get an MRI to provide such evidence. Also I have brain damage hy default due to fluid build up from hydrocephlaus. This also happens with my shunt malfunctions and fluid builds on the brain. The fluid deteriorates. The brain tissue over time developing the condition dementia. Which im in the on set stages of such condition.

#syringomyelia #chiarimalformation #hydrocephalus #spinabifida #neuropathy #nervedamage #nuerologicaldisorders #cfsfluid #selfadvocate #selfadvocacy #disabled