It is very annoying that this disorder is not well known. Keep in mind you know your body better than any doctor does. I think chiarians need to push for more research into the malformation and better educate doctors on this debilitating disorder
Hi and welcome to the Chiari forum.
It is very true that there are many Drs not well informed or experienced with Chiari and the related conditions.
May I ask what tests and MRI's u have had to this point?
Is it possible for u to send ur MRI's and results to a Chiari specialist for a consult?
I have had this illness for a while now my first diagnosis was maniers disease then ad i continued to ge worse they found the malformation which was actually on the original mri. It took a long time for me to convince the doxtors my syptoms were real. They said all this things shouldnt happen but they do. It seems to me they dont really kbow about this disorder. This illness has robbed me of my life i am sick more then im not and all they want to do is give me nacotics. They say i could get a surgery but the risk is highr then thr benifit. I cant see a doctor outside my health plan so i am trying a holistic approch my synptoms are better but there are so many things that i cnt do any more it is sad my life has become this way
Hi...thanks for sharing the link...it is quite interesting how detailed the Dr is ....
Let me know if u get in with Dr Kim
Better link to Dr.Kim's Info
well my dr finally ordered a brain mri and now he is saying after he has reviewed my case he now thinks the chiari is causing all of the symptoms and I am trying to get a apt with Dr **** Kim in Houston
also including a link for some info about chiari from Dr **** Kim
Not sure u r aware, but chiari symptoms do cycle...so at times u may feel I am better and then u back off getting answers, this is typical chiari and how it goes...so do not think it went away...it may calm down, but depending on what u do activity wise u can cause it to flare up too!
ok Thank you I have been looking into a couple of those drs
I am go to have to do something with pain getting worse and worse
again thank you so much
Get copies of that old MRI and find a Dr that is well experienced with chiari to give u another opinion....ur Drs obviously do not know how it can affect us.
Use this list to research drs- this list is not a referral but a means to help u with researching drs-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
Thank you , and my mom has been going with me but we really don't know what to say any more whenever he says the malformation is very common and he does not think my headaches are related
No I have only had one mri in 98 they just called it a pinched nerve and let it go nothing else was ever done untill the pain started progressing
It's it awful when you doctor doesn't believe you. I have had that problem too. It was very helpful for me to have a family member go with me to all my doctor's appt. because they can also speak up for you and your condition's. I have a folder with all Mri's and other doctor report's so you can take it with you to all doctor's visit's if you seek other opinion's. I know this has helped me and also save's time. Just keep being persistant because you will find a doctor out there that will understand your issue's. By reading your symptom's it was as you were describing me and my symptom's. That is why every time I went to a doctor they diaganois me with something else because Chairi is had to find unless they are acctually looking for it. My headaches got so bad that I would acturally cry just to release some of the pressure. I hope you will find your answer's. Let us know.
That is good u have that and they r not old, since u said this was going on since 1998 I was not sure how old the MRI was.
If u had an MRI done then, u should also have a copy of that one too, as changes most likely took place.
Please keep us posted on ur progress
I do have copies of the mri and its not that old only a couple of months but it was not to check for chiari it was for somthing else
Thank you so much for your info