My appointment is on the 10th of September. It’s with a neurologist that does not list Chiari as a focus. I was reffered for possible MS. I was going to bring this up to him and see if I could get his help in getting a good referral to a neurologist that does specialize in Chiari, but I am having increased anxiety over this. I’m emberassed because I feel like a hypochondriac. I’m over weight and I KNOW that is going to come up. I had lost 75lbs, was up to jogging 6 miles a day, but then I started having problems and weakness with my legs and had to stop exercising. Now I’ve gained some back.
But, I was wondering if anyone here knows what they are looking for when looking at an MRI to see if I really should bring this up. Give me a little confidence boost OR tell me I probably need to look in another direction. Two ladies gave me some info and have told me it wouldn’t hurt to see a Chiari specialist on another forum. I guess I’m still just concerned I’m going to be written off for doctor shipping.
Rebecca, you can download an image to this discussion or to your profile page, just make sure the image does not show any personal, identifiable info about you. To add to this discussion look at the top right area of page for “add,” this will bring up what you need to download. For your profile page go to “my page” at the very top of the screen, then click on “photos”
In my experience and reading others’ experiences, I just assume now that there is no neurologist who has ever helped someone with Chiari. I think they help lots of people, but Chiari is not a neurologists niche. Some people see a NL for pain management, though. Most neurosurgeons are struggling to understand what Chiari and the accompanying conditions are, much less the NLs. Seeing an NS does not mean you have to have surgery, but you need to be evaluated by a true Chiari specialist so you know what you are dealing with and can make the best decisions for your personal situation.
My advice is to research until you know your condition inside and out, you know what other conditions you may likely have (if any) so you can advocate for yourself when the doctor is not and so you can recognize a great doc when you meet him. For many if us finding the right “team” of professionals takes time…but worth it.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required.