After being told by the NS that the 15 mm Chiari I have is not causing my any grief I have decided to go make an appointment this coming Thursday with my ENT. The NS said that I was born with this, and it was by accident that we discovered it. No, I have been sick for 5 years (although I do have SCD as well) and I have been trying to find out why. I didn't find out I have Chiari and all of a sudden started to have symptoms, I have been sick and found out I have that as well. I am going to ask my ENT to send me to a Chiari specialist..now I know this is impossible because as far as I can tell we don't have any Chiari specialists here. I am also going to ask for another MRI and perhaps a standing MRI as well..now I know that's impossible too because we don't have a standing MRI machine here either. The NS I saw didn't even request a new MRI, which I find hard to understand. He is going by an MRI that is almost 2 years old..how does he know what has changed in that time period? He basically just told me that I am not suffering with this, and wait until I see the NL in September..shouldn't he be more knowledgeable than a NL?..my appointment was only 10 mins long. I can tell that this is going to be a battle..please keep me in your thoughts!
Hi...
This is just my 2cents...I am surprised that the NS you saw is so black and white about the 15mm Chiari! Even though size does not determine the amount of Sx's each patient has...it is a large herniation..Did you ever have a CINE MRI...the flow study???
Have you thought about getting another opinion from a NS???
Let us know how you are doing and what is going on..please...You cannot wait til Sept to see a NL!!!! My goodness...that is way too long.
Good luck Thursday at the ENT...keep us in the loop on that too..thanks!
I had an MRI, but after 2 years I don't know what kind. I am going to ask the ENT what kind of MRI I had. Yes I was surprised too that the NS couldn't of appeared more disinterested than what he did. It is so discouraging that you finally think you are going to get some answers and basically get shooed away. I post once I find out what is going to happen next and what kind of MRI I did have..should be interesting. I think my ENT was pretty happy that he could pass me off to someone else..when he opens the exam room door I am going to say "I'm baaaaaaaaaaack"..lol..ugh
I also have SCD so I have to go back to him..he is the one who sent me to this NS, and I want to have another MRI done. I initially went on long term disability for SCD..so I have to keep in contact and see the ENT at least twice a year unless something changes..so I figure I will tell him that I want another MRI and I want a Cine MRI as well :)