Thank you for the welcomes :) Saw NS today. Mine is only a 3mm, so at first he said it is not Chiari because I don't meet the 7mm requirement for diagnosis?? Then he reads MRI and other tests and says since the lumbar puncture opening spinal pressure is 37, maybe it is Chiari?? Than he said that my vision, dizziness, auditory, choking, mental fog, numbness, etc, are not signs of Chiari only my never ending neck/headache worsening with strain is??? And goes on to talk about placing a shunt or doing the compression surgery-- I'm so confused!! He's ordering a spine MRI and ophthalmologist exam for the icp, then doing another lumbar puncture to check pressure level. I was under the impression it was the symptoms more than the size of the herniation?? At least I didn't get dismissed as having a migraine or occipital neuralgia again :)
Ummmm All i can say is RUN and RUN fast....
1. it is not the SIZE that matters.
2. he is all over the map with his diagnosis
3. i wouldnt let anyone do any surgery on me that wasnt sure why
4. MAYBE???
dunno where you live but, I would find a specialist!!
I would not trust this NS or continue with any of his plans. Your ICP is high, I would avoid 2nd lumbar puncture and find another NS. Go to a chiari specialist asap.
I wouldn't stick with him. Find someone who knows more about Chiari. My herniation was not long, but was so thick that it blocked almost all CSF flow. You need a CINE MRI to see how your flow is. Oh, and I would rather have surgery again than another LP. Those things put me in pain for a week!
hmmm.....if this is true:
Than he said that my vision, dizziness, auditory, choking, mental fog, numbness, etc, are not signs of Chiari
Why have all these symptoms went away for me after surgery???? My herniation was 8mm and 5mm.
He seems to be running the right test but not understanding the results. It seems to me that he isn't that up on Chiari.
Hang in there!
Diana
I was so confused in a awestruck way on how he flip flopped between what he was saying! Even talking about the decompression surgery he was back and forth on pros & cons, how it's a long recovery, traumatic surgery, and I could have more problems after it. He didn't say anything about doing a CINE, just the spine MRI for syrinx possibility. I should have gone in more prepared.
The elevated ICP is apparently his biggest concern (some days I'm crawling to the bathroom as standing is impossible without vision loss, exploding head pain, and vomiting) hence why he mentioned placing a shunt. So my question to you all with so much more knowledge than me :), why is doing a lumbar puncture to let off excess fluid bad? And how do you find Dr's that handle Chiari, since it's not its own specialty field it seems every neurosurgeon says they handle cases.
Thanks everybody! I'm so thankful for this forum!!