Hi and welcome to the Chiari forum.
I am so sorry both u and ur DS have to deal with these issues....
It is diff to locate Chiari specialists near home and some may have to travel to get to one...we do have a list of Drs that members here have been to and liked, it does not mean all Drs on the list r true Chiari specialists u need to research all the Drs on the list as it is also not meant as a referral.
Please feel free to share some of ur symptoms with us as we can share what we did to help with them...and know u r not alone : )
I have a chiari and my son was just diagnosed with one last week. Both are 5mm. Our doctor doesn't believe they cause real issies, but we both suffer terribly. I would like help findjng a specialist in bay area California if anyone has resources. Tha ks so much. My quality of life is crap and I feel really alone. Gia
Hi and welcome to the Chiari forum.
Until u have further testing there is no way to say u can post pone treatment...I deff would have the testing to see just how ur Chiari is affecting ur overall health...so u have a CSF obstruction etc.....
If ins is an issue look into the clinical trials....we do have a link, just use the search this community to find other threads on the topic.
I had ct scan (w and wo contrast), for headaches and double vision and dizziness and probs with balance. I have occasionally experienced little problems with fine motor skills, high pitch ringing in ears, and a few other symptoms that may or may not be related. My doctor said she doesnt know anything about chiari I (which is what ct report said was probleme. Report also recommends mri.) My question is this: I dont have insurance (to speak of... It ONLY covers office visits and some lab work) Is this a condition that I can ignore? I cant afford treatment (currrently unemployed and therefore no real insurance). I had to scrape and scrounge just to get the ct scan, because that isnt covered either. SO is this really something I can not worry about. I did go to doc because of dizziness and balance issues.
Hi and welcome to the Chiari forum.
We do have a list of activities to avoid....
http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186
It is not that u should not play an instrument, it is just the position may be difficult on ur shoulder and neck area depending on which one it is....
As for singing some of us have had our voices affected so singing may be difficult....
But it is not something u should not do....
U have to listen to ur body as to what u have effects from after doing the activity....
If you have chiari, what are you not supposed to do. Example: Jump up and down , do heavy lifting , boxing, running.bounceing around, playing a musical instrument ,singing.