Don't Understand

[hevnw8s]

I had a very disappointing experience today. After having one Neurosurgeon dismiss my Chiari, the Neurosurgeon I saw today didn't fair much better. I was told that I have a 6 mm herniation and a 3 mm syrinx but he doesn't feel all of my symptoms are related to my condition. He said a 6 mm herniation is right on the line of being considered Chiari...anything smaller is inconsequential. He didn't seem to feel that anything under a 10 mm herniation was a valid complaint unless the CSF is obstructed.

I have been bounced around to so many doctors over the past 2 1/2 years and all they want to do is give you medication. I don't want medication, I want to be better!!! I am so lost on what else to do.

[selmaS]

  Glad u have a plan to move forward to feeling better...do post ur surgery date on the thread for them and mention what surgery u will have and I will post a prayer thread for u....and I hope u have someone to post updates on ur progress post op : )

[hevnw8s]

They never mentioned EDS or anything else other than Chiari, Syrinx and Tarlov Cysts. I was actually told today that Dr. Feigenbaum in Dallas, TX will do the surgery on my cysts. Now I will travel to Texas for 9 days for the spinal surgery. Chiari will have to be secondary until I heal. I will be in the hospital for 5 days and then return 3 days later for a check-up.

I am very very nervous but happy to get one of my issues's dealt with.

[selmaS]

  Hmmm well I am not up on Tarlov cysts either....will have to look into them and see.....

The gag reflex is deff a Chiari issue, and vision issues....I hope the CINE MRI revels what is going on....

Did they rule out EDS?

[hevnw8s]

He didn't say what could be causing the other symptoms or pain. He said my 3 mm syrinx is too small to cause any pain. He said I have crowding in the back of my herniation but stated the front is clear enough for things to flow. He is ordering a CINE MRI but said my flow is probably ok.

He was very knowledgable and deals with Chiari often, I just don't understand what is causing so much pain. My ears are very "foggy", I have difficulty swallowing, I lost my gag reflex, I have bad headaches, I have "cloudy" vision and I am dizzy all the time. He said my swallowing, headaches and "foggy" ears are probably Chiari related, but he doesn't know what is causing the other symptoms.

I do have Tarlov Cysts on all area's of my spine but not sure what part they play.

[selmaS]

  Hi....I know just how u feel BTDT with Drs too....and I do not know who u went to see, as I went to Chiari specialists that agreed some of my symptoms were not from the Chiari either...I do have other related conditions that cause many of the same symptoms Chiari does.

Did ne of these Drs look for or suggest what could be causing ur pain?