I had quite an awful appointment with a neurosurgeon last week as she unfortunately was not interested in my specific symptoms at all, but said if I didn’t have pain in the back of my head, then the severe pressure headaches that I have been experiencing are migraines and not related to Chiari. Regardless, she did order an MRI of my spine, with and without contrast. Has anyone had both? I am wondering the reasoning behind using contrast but do not feel comfortable contacting her again. Any information would be helpful.
Good morning. I’m so sorry to say your experience is not unusual. My daughter was diagnosed with Chiari in August and almost every neurologist and neurosurgeon we’ve seen have tried to explain away her symptoms with migraines. It is terribly frustrating— I know with 100% certainty that these symptoms are NOT migraine. She has had several MRIs all with and without contrast. The contrast is used to show more detail, as I understand it. It can even show inflammation in whatever area is scanned. I would go through with the MRI all while searching for another neurologist and neurosurgeon. Good luck on your search and I would recommend looking at posts from people in your area on this site. Everyone here is very willing to share their experiences and help.
Best wishes and God bless you
Thanks so much for your response. It was almost comical as I had read so many posts here regarding chiari patients having a hard time finding a doctor that will help them, that I wasn’t surprised by her lack of interest.
I also asked for a fine MRI, but she said she only orders those when she is trying to diagnose chiari, and since I am 16mm descended, there is no need for one. That seemed like odd reasoning to me, as my main symptom is feeling pressure in my head, but I was so discouraged that I didn’t press. After I have the results of this next MRI, I will be trying to get an appointment with someone else who might order that for me.
Sorry for the typo, I meant cine MRI.
I had an MRI with and without contrast and they found a 6mm Chiari I had been suffering for years but due to having 3 cervical fusions on the 5-6 level doctors always thought my symptoms were from all the hardware until things started getting worse last winter. My family doctor is wonderful but didn’t know anything about chiari so he referred me to a neurosurgeon who was the worst human being I have ever met. my insurance was ending due to having to leave my job because of pain and symptoms he dismissed me the second he realized this and told me to get some insurance and that I couldn’t afford anything so he can not do anything.
I can say as someone who has had both types of headaches my entire life, there is a HUGE difference between the two. Migraine headaches come in a variety and are extremely different for almost every person that you will encounter. However, true Chiari headaches differ very little from person to person if it is an actual Chiari pressure headache- which the root cause can be seen on a cine MRI. I have had w/ and w/o contrast MRI, they contrast does allow for much more detail and is an extremely important part of your diagnosis and treatment. It will help to locate any areas of impingement, blockage, etc. Nothing is worse than dealing with a doctor that you feel is not hearing you and validating your concerns. However, if they treat both ACM patients and Migraine patients consistently, they should know the difference between the two based on what you are describing. I’ve had two ACM surgeries, I’ve had a lot of relief from my ACM headaches, but they were correct in saying that I would not get any relief from my migraines.