Hello everyone, I want to first thank everyone for sharing all there stories, and information. I reached out for some support, and found this forum and new it was a place folks could help me on my journey. I was diagnosed with Ehlers Danlos Syndrome, and a Borderline Chiari Malformation 7 years ago. I started to get treatment when anxiety attacks struck, and I have been stuck without medical treatment due to those nasty panic attacks. My symptoms have gotten worse, and I decided to fight, and went for a MRI. I have cervical osteophytes pressing on my spinal cord, enlarged aorta, vision problems, facial numbness, and numerous gastro and gu problems. I am scheduled to see Dr. Weingart at Johns Hopkins in a few weeks. The funny part is my last MRI showed that I had a 5mm malformation, but my latest MRI says no Chiari Malformation which leaves me greatly confused, and I am hoping Dr.Weingart can sort this out. Was the first report wrong 7 years ago, or did the radiologist 2 weeks ago miss it? I finally broke down with tears today, as with severe panic attacks this is going to be the hardest thing I have ever done in my life! Thank you all for listening to my story!
I’m so glad that you are going to see a doctor that may finally be able to help you. Try and stay positive.
Sorry you are going through such a hard time.
First, the malformation can change through time. It can get bigger, it can get smaller though that is supposed to happen very rarely.
Second, different radiologists can interpret a finding differently. I had an MRI around 8 years ago and the radiologist wrote "Chiari I malformation on the right side with narrowed space for the csf", and the one I had a month ago, the radiologist said " 5-6 mm herniation on the right side". To me the herniation on both MRI's look the same, but it can be described differently.
I'm not a doctor, but I think anything pressing to the sinal cord can cause Chiari like symptoms.
I know going through all the symptoms and all the unknowns can be really stressful. I hope the NS can answer your questions.
Try some breathing exercises or short meditations for the panick attacks. They can do wonders. :)
Hope you feel better soon! You will get through this!
Kristine