Is chiari the problem? Help!

Question

Hi, i found out about a year ago when i was 16 that i had chiari 1. I was having bad headaches so my dr did an mri, he said it was all clear and good. I saw another dr to try and figure out what was wrong with me and he brought up that i had chiari, but it was minimal at 5mm and he didnt think it was causing the problems. I saw a neurosurgeon and another neurologist and nobody thinks it is the problem, even though nothing else has come up.at all. I dont have csf blockage and i had my spine checked also and everything came up fine. I have constant severe headaches and dizziness, im always in pain in the back of my head and along my neck. I have looked up symptoms for chiari and i have many of them but for some reason my dr still says it isnt causing it because i dont have csf blockage. Could it be the chiari thats causing my problems?

selmaS · Answer

We do have a list of Drs, the list is to help u locate Drs and is not a referral...but the list is compiled from the members here of their drs names....and they r only to add the name if they were happy with the Dr.

There is a Dr Rosner in NC and a Dr Henderson in Bethesda, MD...not sure if u can travel to either of them, but both have very good reps.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

  "selma"

Georgiakatie29 · Answer

Thank you so much for the help! I think i need to find a specialist to have those other tests done you talked about! I live in virginia, do you know of any specialists nearby my area? And my last mri's were in december.

selmaS · Answer

Hi and welcome to the Chiari forum.

  First I get irate when a dr rates ur Chiari by the size of the herniation instead of how it is affecting u....ugh

 Next, CSF flow can be affected intermittently....such as when u stand, so if ur MRI was lying down, or may not show a blockage, but it may be a slower flow...And u may also be someone that has inflammation with stress or certain activities....a true chiari dr will know how to look for these issues.

 U should also be ruled out for related conditions such as Ehlers -Danlos, syrinx, tethered cord, sleep apnea, ICP,etc.....

 Even POTS could be a factor for u that should be checked....not all with chiari r surgical candidates, but there r  and is other testing they could be doing for u to see what is going on.

 May I ask when u had ur CINE MRI and ur brain MRI?

   "selma"