Neurology Appointment Sept 10th, questions


I have not been diagnosed with Chiari. My MRI report says everything is normal but does mention a minimal tonsillar prolapse in the order of 2 to 3 mm of no significance. In the conclusion it states mild low lying cerebellar tonsils of no significance. I looked this up and all I came up with were sites referring to Chiari. I have looked at the MRI images and it doesn’t look any different to me than a “normal” brain MRI.

I guess my question is whether or not I should explore this or bring it up to my neurologist on September 10th and ask him to explain why it is of no significance. My neurology referral was made in regards to headaches, often very bad headaches, nearly every day and suspected MS. I also have the constant neck pain and weakness in arms and shoulders as well as some other intermittent symptoms. I have lost some function/use of my left hand and my right hand seems to be following – though I have no idea if that is related. The headaches and the constant re-positioning of my shoulders and neck to avoid pain is really exhausting me.

I am a very active mother. I also work full time. I love the outdoors and being involved in physical activities such as hiking and running. Over the last year or so this has really slowed me down. Having said that, I am still very active and push very hard. My family really does not know how exhausted I am or how much my head and neck hurt.

Thanks for the opinions. Hope all is well with everyone.

Rebecca, many of us also have small herniations. This can be an added challenge because so many of the neurologists and neurosurgeons have the outdated education that a herniation has to be a certain size before it’s considered symptomatic. Some think it’s 5mm, some think it’s 20mm. The good news is that there are NS and NL who have a truer understanding of what Chiari, and conditions that come along with it, are. It is suspected that symptoms arise when there is a block, or disrupted flow, of CSF. Over time, adhesions can form in the brain from the hypertension of CSF, and a cyst can form in the spinal cord for the same reason. My guess is that you have been trying different things and seeing different specialists and ruling out diagnosis as you go, and that’s a good thing.

You need to see an NS who specializes in Chiari and the conditions that are often seen with it. This does not mean that you will have to go through with the surgery. Many people choose not to have surgery and try to manage symptoms with diet, lifestyle changes, and meds. But, some do need the surgery to prevent severe, lasting consequences. You need to have your situation understood so you can make the best decisions :)just keep researching until you feel you know your condition inside and out.

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.


Tethered cord syndrome

Sleep apnea

I am glad you found us,