My 19 year old daughter suffered a concussion nearly two years ago. It was followed by terrible post concussion syndrome. While many of her problems have resolved she has had a low grade headache 24/7 since the concussion. An MRI scan early on showed low lying tonsils ~5mm but was noted on the report as "not a true Chiari malformation" and we were never even told. Not until I got all her records and we transferred to a headache clinic was I aware of this. The new doctor ran another MRI with similar results ~6mm. He then ordered another MRI with contrast and this showed NO obstruction of CSF. Based on that he is saying it is not a Chiari malformation and my daughter is fine. We were thrilled with this news, but left confused. My daughter's headaches continue with occasional spikes in intensity. She has weakness in her neck and upper back and is constantly uncomfortable from that. She is also occasionally having tingling in her arms and legs. The neck and back pain and tingling has developed in the last 6 months and was never there prior. The doctor is telling us this is just stress and or post concussion stuff continuing. My biggest question is---- is it possible to have Chiari symptoms with no restriction in flow? Could she be at the early stages of this? Any thoughts or feedback form someone who has faced similar situation would be most appreciated. Thanks.....Concerned Mom
It sounds like your daughter definitely should be considered to have Chiari. The old standards stated the herniation must be at least 5 mm, which she meets. The new standards say it can be less than 5 so I don't understand why you were told she didn't have chiari.
Did the doctor do a CINE MRI or just a brain w/ contrast? You really need the CINE to be able to see the flow of csf. I would seek out a NS experienced in chiari to help your daughter! Good luck! :)
I also have had closed Concussions & Post Concussion Syndrome. I am sorry your daughter has been dealing with this along with Chiari. I have an excellent article that discusses herniation sizes and symptoms. I will find it today. You daughter need a second Neurosurgical opinion. Not that she necessarily needs Surgery. NS just are better educated in Chiari Malformations. You can definitely have Chiari & severe symptoms without CSF restriction.
Anglyn- thanks for your response. I am unsure of exactly what scan she had. It is labeled as "IC MRI BRAIN INC STEM W WO CON " on the report and I know my daughter had to wear a fingertip monitor. Would you please let me know what the difference is in a CINE MRI vs. what my daughter had?
Anglyn said:
It sounds like your daughter definitely should be considered to have Chiari. The old standards stated the herniation must be at least 5 mm, which she meets. The new standards say it can be less than 5 so I don't understand why you were told she didn't have chiari.
Did the doctor do a CINE MRI or just a brain w/ contrast? You really need the CINE to be able to see the flow of csf. I would seek out a NS experienced in chiari to help your daughter! Good luck! :)