Another new question

[hevnw8s]

When your Neurosurgeon and Neurologist tells you that you have Chiari Malformation with a 6mm herniation and 3 mm syrinx, including perinial cysts on your cervical, thorasic and sacrum..and then they tell you that absolutely none of these are the source of your pain, what do you do? This is my 2nd Neurosurgeon and 3rd Neurologist. They both are very good but they say both the herniation and syrinx need to be bigger to cause any pain. I have to say, I am pretty tolerant of pain and I am in excrutiating pain. I'm lost.

[desertstorm2009]

Check your status comments!

[selmaS]

  There are many Drs out there that do not feel Chiari will cause pain, so do look at our list of Drs and use it to research Drs as u need one with experience with Chiari and related conditions,.....we all have gone thru this being told it is "all in ur head" meaning we are making it all up, but it is in our heads and we need a Dr that knows that.

[AnnieDear]

Unfortunately, this is all too common. All I can say is try again. See if you can find a Chiari specialist. The NS I finally found that understood the science behind the herniation and syrinx is several hours away. But the understanding and support I receive has been immeasurable. By the way, my herniation was only 5mm but my syrinx extended the length of my thoracic region. The NS said every one is different so you can't really judge the effect of Chiari by herniation alone. CSF flow and the blockage are not always examined. My herniation wasn't that long, but when the NS opened me up, he found my brain was acting as a cork. I had a severe lateral blockage that required an aggressive decompression. This is a difficult road, but don't give up. Keep looking!

Best wishes,
Annie