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.
-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)
-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
I know it must feel like there r NO Drs that treat or understand Chiari or related conditions like EDS but there are, we do have a list of Drs that have treated members here for it, use the list to research the Drs to help u find the right Dr for u,
It is possible ur EDS could be causing many of ur symptoms....as well as POTS or ICP....
Have u had a brain MRI? Do they let u get copies of ur MRI on disk up there? IF so, get them and u can send them to Chiari specialists for review, some charge a nominal feel while others may do it free of charge.
BB11 - I haven't been formally tested for POTS, but my doctor said I had it based on my symptoms. I have had an MRI done a few years ago which came back normal.
selmaS - I will check out the list, thank you! And yes, it is very possible that EDS is causing my symptoms. I didn't think about sending copies of my MRI to an out of country specialist, but that's a fantastic idea that I will definitely look into. Thanks!
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.