Hi and welcome to the Chiari forum.
First, do u have copies of the MRI's and the reports? There r many Drs that will say the results r "normal" since their definition of chiari falls short of what it actually is...too many look at the length of herniation to classify chiari, when it is the malformation of the skull, the herniation is an after effect of the smaller space....and chiari can affect those with a smaller herniation as opposed to those with longer ones if the width is wider then the longer one...what they need to look for is CSF obstruction with a CINE MRI....
If ur DD does not have the malformation, it is still possible for her to have these symptoms with related issues/conditions like POTS, PTC, or Ehlers-Danlos.
Having a syrinx in the thoracic area is a red flag to me and I would get the MRI's reviewed by a true chiari specialist.
She could also have overcrowding and a retroflexed odontoid.....these all can obstruct CSF with minimal tonsil herniation. And Obstruction of CSF can cause a syrinx to form.
Best advice I can give is research the drs on our list to find a true chiari specialist to review what is going on, and educated urself so u will recognize a chiari specialist.
My Daughter who is 15 was diagnosed with a syrinx in her thoracic spine in November, after complaining of back pain for 2 years..She has had a MRI or her brain, Cine MRI, and MRI of the cervical spine, thoracic spine and lumbar spine. We were told there is no Chairi malformation. She suffers from severe migraines, since she was 5. She sees black when she stands up, has numbness and tingling in her extremities.She has always had motion sickness, had a creeepy crawley feeling on her scalp and other various symptoms of Chiari .All of her images were done without contrast.My question is would that make a difference in diagnosing Chiari? Dont know what else to do , she is so miserable.
Hi we do have a small list for Canada, but the same goes, u have to research the drs and the list does not imply a referral.....
http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605
Let us know how ur search goes : )
"selma"
Hi
Thanks for the speedy reply......I actuallu had an MRI back in 2007 just when I started to complain about being lightheaded 24/7....the MRA was done in this October....the Neuro has also ordered and MRI of my neck and spine would the neck part show any abnormalities. I dont think she will be willing to do my head again. When I look over the symptoms of Chiari I have an awful lot of them. Unfortunately I live in Canada where getting referrals t specialists is next to impossible never mind the wait lists......is there a list of doctors anywhere in Canada that know about this condition?
Thanks
Bren
Hi and welcome to the chiari forum.
In addition to Pam's comments I wanted to add, that many times those with chiari can be told a MRI is "normal" too when in fact there is an issue...many radiologist and NS consider a finding of chiari or low lying tonsils as an incidental one...and my never let u know what is really happening or if u have chiari.
Since u have a dx already, try to get to a true chiari specialist to find out the best course of action.
We r happy to have u join us, but not happy about the reasons that bring u.
"selma"
Hello and Welcome! MRA is just a scan of arteries and blood vessels. I looked at a scan online and it literally only shows blood vessels. So my thoughts are it would not show if the tonsils were herniated or ectopic. I would ask for that MRI to be done to rule it out if you suspect it. Let us know how it turns out! If you need us we are here.
Pam