Hello. Well just want to know if anyone else is in my situation.I was told I have Chiari about 9 yrs ago.And been bounced around to a couple Dr.s who don't seem to know much about it.I also been diagnosed with Fibro.Well anywas the only thing that hs worked for me is pain meds.Well now my Dr. Is saying that treating Chiari with pain meds. Is not right,and wants to try the same stuff we have tried before.wtf? Very frustrating that they say pain is not a part of Chiari and act like the symptoms I'm having are not right.
What u r dealing with, we have dubbed "The Royal Chiari Runaround"....the problem is u have Drs trying to help that have no idea what chiari is, or how it affects u.....U need a true chiari specialist.
Meds do not work, as this is a neuro issue and the problem is chiari causes the cerebral tonsils to herniate, these tonsils can cause a CSF obstruction which is where much of the pain comes from ....surgery is done for those with chiari and an obstruction to restore flow and slow progression of the condition...
Many with Chiari have related conditions as well and should be tested b4 they have surgery as some can affect recovery.
We do have a list of Drs, they are the names of the members drs, the list is not a referral, but a means to help u get started researching drs so u can find the right one for u.....http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
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