I went straight to a NS when an MRI picked up a syrinx and he ordered a brain MRI after I mentioned that I have migraines in the same spot and which often wake me up. The brain MRI confirmed I have CM. He recommended surgery, but when I started to freak out when he described the surgery, he instead said we could try to manage the symptoms instead, so he referred me to a neurologist. However, he cautioned that the NL could only treat the symptoms and that surgery is the only real treatment for the cause.
I went to see the NL last week. Unfortunately, my NS's office didn't send any of my records over despite initiating the referral (my bad for assuming that they would), so the NL could only look at the radiologists' report which didn't match how the NS read the scans (radiologist's report showed 3-4 mm herniation but said nothing about CM while the NS noted a 6.5 mm herniation). Based on the radiologist's report alone, the NL recommended against surgery, although she did agree that if I my brain stem were compressed and I had a syrinx, then she would recommend surgery. So first question: has anyone seen this kind of disparity between a radiologist's report and a NS interpretation?
Second issue is that the NL believes that I also have an underlying migraine disorder because my headaches aren't prompted by coughing or straining. Instead, I have a steady pressure that pinpoints behind my left eye with some neck discomfort which some days can be painful enough to make me hurl and is often made worse by coughing and straining.
Which leads me to my second question: do CM headaches only present with the uprupt trigger of coughing or straining? I started getting 5-10 second vertigo dizzy-spells about 3 months ago, which the NL says can also be attributed to the migraine disorder instead. Although my headaches and the dizzy-spells can be debilitating, it isn't every single day. On one hand, I don't want to have surgery unnecessarily or prematurely (luckily the NL was able to confirm no current nerve damage), but on the other, my headaches and dizziness have progressively gotten worse, so perhaps it's better to tackle it now when I'm in my 30s and before my symptoms get worse?
It is dang hard to know who to trust in order to develop the right course of action. I tried some of the migraine medications the NL gave me and although I initially got some relief, the migraine came back 5x worse : (