Hey,
I haven't been diagnosed with Chiari Malformation but suspect I have it through doing online research. I have been diagnosed EDS (hypermobility type). Sadly I'm in Canada and it seems like no doctors here treat or know about Chiara, let alone EDS so I have no way of perusing a diagnosis, or a treatment. I'm pretty lost, which is why I'm here.
My symptoms include:
-lightheadedness and near fainting when standing for more than a few minutes (i've actually fainted a small number of times)
-Pain/tension/stress on my lower neck that vibrates up my head and down my spine, and that hurts more when I move my head.
-Dizzyness.
-Bobble-head feeling
-Difficulty standing, or sitting when I don't have neck/head support. Lying down/resting my head always improves pain and lightheadness. Wearing a soft neck brace also helps.
-Difficulty swallowing and chronic acid reflux
-Slurred speech when my symptoms are worse (like my tongue is heavy)
-Ringing in ears
-Need to urinate frequently (like, I use the washroom every half an hour)
-Scoliosis
-tightness around my chest (like im wearing a corset thats too tight)
Some of these symptoms might be due to my EDS.... but as you can imagine, they're really reducing the quality of my life and I feel like they're only getting worse.
Seeing as I dont have support from doctors about this, I'm really at loss about what to do. I wear a soft neck brace when I'm home and that helps, and I try to rest my head as often as possible, and I rdrink a lot of water.
Does this sound like it could be Chiari? Does anyone have any suggestions on what I can do to improve symptoms, or possibly where I can go in Canada to be tested for this, and treated if I do indeed have it?
I'm really desperate for help... any suggestions will be really apprecaited
thanks!