Hi all...
I feel a bit of a fraud asking advice here as I do not know if I have a true CM...
A 4.5mm tonsil hernia showed up on my MRI but a subsequent Cine MRI showed no CSF blockage. My synptoms are typical of a CM !! I'm very curious to know if there is anyone who has the same?
Thank you all for previous responses & I find the stories on this site truly inspirational !
Hi Helen.
When I was first diagnose, mine measured between 4 and 5. That was 4 yrs ago. Now it is between 7 and 8. Yes, it is Chiari and yes you can have symptoms. I had so many for so many years and they had no clue what was wrong with me. It was finally when I started having horrible dizzy spells and not being able to stand at times that my family doctor ordered an MRI and they found it. He spent about 2 hrs with me going through the internet trying to learn about it as he had never heard of it. I had migraines forever, dizziness, problems with pain in my arms and hands. Cant taste or smell anymore. Etc. The list goes on and on.
Everyone is different on how they can handle it. I have heard stories of some having a 15 mm and do not have many problems. I am not sure what makes some have a lot of problems with a small herniation and others with a large one not have many. This illness does not make sense. What I can tell is to find a dr who is a Chiari specialist or at least knows very well about it, and follow his advice. Also, make sure that you have an MRI every year. I was very shocked to learn that in a short amount of time how mine had changed.
Oh and 'brain fog' and ringing in the years are some of the worst problems. Not sure if you have those yet but they are not fun!!!
hi and welcome\\
you are in the same situation i was in
my herniation was 5mm and the cine mri showed diminished csf flow / not blocked
however once the surgeon was in there he noticed that it was blocked in an area that is not easily caught even on a cine
you are no fraud my friend
keep us posted
Hi Helen,
I promise no one thinks you are a fraud. Everyone reacts differently no matter what length your herniation is. I have talked to many people like you that has a smaller herniation & has CM Symptoms that are sometimes worse than someone with a very large herniation. Please know we understand. It took me 5 years to get diagnosed with CM1. I was even told I should see a psychiatrist by an experienced ENT. My NS wrote him a letter after my CM surgeries. Please know you can always come here. We have amazing Members. Do you have a Neurologist or Neusurgeon?
Tracy Z.