So I received my results from my CSF flow study today . . . the nurse called and said, "the doctor has reviewed your flow study and it appears normal, so surgery is not necessary. He suggests you return to your PCP to discuss other options and medicines that might help your symptoms." I was left stunned. I just knew that it would show some "blockage" and that my complaints/symptoms would be validated. The MRI still shows the 8mm herniation, but "normal flow." I know that I should be relieved that I'm not about to face brain surgery, but I feel at such a loss.
My headaches are worse than they've ever been. Sleeping is incredibly painful (lying down really seems to aggravate things). I'm so tired of feeling bad . . . I was just hoping he would say that he could give me some relief.
I agree whole heartedly with Emmaline and Violet. Someone else might read it and get another answer especially if the doctor relied on the radiologist. I had a doctor who NEVER looked at my films or showed them to me for 10 years. She relied on the reports and I was told everything was normal for years after my decompression. After I switched doctors I was shown my films and as soon as I saw my MRI I gasped! I had a big pocket of fluid at the base of my skull that you could see was swollen. It did not look normal was not normal and my new doctor agreed.
The CINE MRI is one piece of information but it is not the deciding factor in all cases. I would look for another doctor and a second opinion. The quality of your life and your symptoms should be considered equally. Regardless of whether the flow is blocked the herniation puts pressure on your spine, brain stem and brain and is causing considerable discomfort. The surgery is not a cure it is a treatment and is often performed so that symptoms don't get worse. You may not need surgery but it doesn't sound like you are being listened to.
I was not listened to for years and I acepted it because I was scared to change doctors. By the time I did there has been so much damage done that they are not sure my revision will change much. I say this because I wish that I had found this site and these wise wonderful people earlier and I wish someone had pushed me to seek out another opinion.
I couldn't agree with the other folks here. The first surgeon that I saw said the same thing to me. When I saw a second surgeon, after spending a year alone in a dark quiet room with migraine-like headaches, he showed me the little trickle of flow in the back that the other surgeon and radiologist said was normal. Regular neuro-surgeons, and radiologists for that matter, with all due respect, don't know "jack" about Chiari. You have to find someone who specializes in Chiari. If you have 8 mm herniation, you fit the diagnostic criteria - plain and simple! I had 7mm herniation, had surgery 3 weeks ago and have not had a headache since. Neurosurgeons can be very dismissive. When they are, it usually means they are out of there comfort zone and instead of facing their fallibility, they just dismiss you. I cannot encourage you enough to find a NS who has done 500 or more Chiari surgeries - only they have seen enough of the complexity to help you make a good decision. Good luck.