On 3/4 I saw a chiari specialist who undiagnosed me. Now you would think that this would be a happy moment. While I'm glad that there is a possibility that I dont have Chiaris it leds back to the ever famous frustrated quest of WHAT THE HELL IS GOING ON. Now he did recommend several other doctors from different fields and even recommend a couple of clinics but his qoute was " I'm as sure that you dont have CM as I would be at looking at a flat tire and telling you ite flat." Well back to square one. I have Chiari like symptoms a MRI that shows no tonsils and no blockage so doc says CM 0 is out also. Back to the grind to figure something out.
Thank you I will check that link out. But I am confident in this NS opinion. If I find something to argue his opinion then I will present it back to my team of docs but for now we start looking at other angles.
Don’t let anyone stop you searching the chiari condition out.There’s to many NSs that don’t know what to look for if there’s not some big herniation they will tell you anything.I just had decompression 4 months ago and not one NS in my area for 27 years thought I had a chiari I felt for yrs. before that I did.I finally found a specialist who knew what he was doing and I am now starting to live my life.If there’s not a specialist in your town you need to find one.NS’s in most cases want there to be a large herniation before giving a chiari diagnosis,that’s not right.I had surgery with a NS who is a pioneer in the field and the irony of it all is that he has been within 25miles of my home.Would you think even one of those NSs would have told me? Not…I found him on the Internet myself even though I had ask the others if
there was a specialist near by,but they told me no because they don’t agree with this Dr.,they’re wrong and he is right.I’m proof,because of my good results,please find a specialist,lots of people travel to N.C. to see this NS because too many of us are not diagnosed because of limited knowledge. My intuition was right and yours might be too I kept searching for my self and found the right answer so go with your own gut.keep on keeping on!!
As I noted before I am very confidant in this NS opinion. He teaches Chiari has lectured on it nationally and has been published. While I have Chiari like symptoms no form of Chiaris shows on test. There is no herniation and no blockage or pressure on the stem or cord. While I am most diff having a neuro problem right now all roads point away from Chiaris. I will keep an open mind to Chiaris but right now I must also keep my mind open to other disorders to be able to concetrate on my health.
Good luck on your journey to finding a diagnosis! Keep us posted on your condition! Even if it's not chiari it sounds like we deal with a lot of the same issues!