I saw my neurosurgeon, first visit

Can anyone give me a little insight? I went to my first neurosurgeon appt. today. has anyone with Chiari 1 been told that if the herniation {mine is 5mm} isnt pressing on the spinal chord , then that is not causing the symptoms you have??? Is this possible? I also have a slight disc bulge at c5 & c6, but he said he sees nowhere that it is pinching any nerves. He has recommended pain management for nerve block as he feels my neck and back pain is muscular pain. also traction... I'm relieved at the "no surgery" findings, but confused at the fact that it isn't Chiari related. If its not presing on anything, then is it a dormant Chiari??????? Anyone else ever hear this finding??

I live near Erie Pa, if the herniation isnt visably pressing on anything, then my pain could be muscular, right???

I agree that you should go for a second opinion with someone who knows about chiari. I think the problem is not that your herniation presses on the spinal cord. It's that your herniation (your brain) gets compressed by too little space and can block your flow of spinal fluid. To see that you need a cine MRI. And yes it can cause symptoms no matter the size.

Just wondering, can the Chiari actually cause herniation due to the extra pressure?

What exactly is a cine MRI?

My second opinion is limited, I don’t believe there are any Chiari specialists around Erie, Pa. Pittsburgh seems to be the closest and that’s 4 hours away. Not easy with 2kids and a husband who can’t miss work. I will dig locally and see if any are worth a try!

A cine MRI is an MRI with a pulse ox on your finger. It is like a movie, it looks at how your spinal fluid is moving.

A lot of us have had to travel to get the proper care. Drs. are not very knowledgeable about chiari even neurologists and neurosurgeons, unfortunately.

Thank you Donna. I’m realizing that I’m going to have to travel to get some real answers.

My chiari was boarder line and I was very miserable.In my case I would have never gotten any help if not for a very good NS who is a pioneer in the field.If I had listened to the other Drs. I would still be suffering because of the opinion that there must be a certain herniation before we can have life altering symptoms.My case is evident that that is truly not true my compression was caused mainly by the cerebral tonsil pressing into my brain stem leaving a deep grove in the left side and also on the right.The medical community does not have the experience that my surgeon had.I feel many patients are suffering needlessly because of the way most NS diagnosis chiari.I am so blessed to have found a Dr.who is not going only on mris.for the diagnosis but going on so many other symptoms.Dr.Rosner’s opinion comes from so much more,his exams are different from most NSs.This Dr.is truly amazing if your life is altered by this condition,please find a NS that is a specialist

Hi Lynn! I agree with what the others have said. Please get a second opinion. Not all neurosurgeons are familiar enough with Chiari. I live in Harrisburg and I travel 3 hours each way to Pittsburgh to see Dr. Bejjani. He has never once told me that my symptoms were not from Chiari. Trust me...this is your brain and your life! It is worth driving a little to be treated by someone who fully understands.

Okay… I had the cine MRI in the laying position and showed no blockage, but I went for a lp and the couldn’t get any fluid were supposed to get 20cc could only get 2cc after an hour of manipulating my neck position etc. what my ns said was that the blockage also depends on your positions. I have all these symptoms a syrinx and a thorasic spinal stenosis that are all according to my ns a result of my chairi but at the time of my cine MRI it showed no blockage oh and the neuro radiologist made notes of how I had an “obvious csf blockage” due to he couldn’t get the fluid with X-ray lp what was so funny was I ended up having a csf leak from that and had to have a blood patch that made me feel so much better for about a week. It’s all a tricky thing and we are all different find someone who knows and understands chairi