I saw a NL for the first time in January. On my first visit, he ordered an MRI. Second visit, he told me blatantly that I have a chiari and that it does NOT affect my life, and pills that make me feel like a zombie will fix me, even though I told him I didn’t want to be on them any longer. He didn’t listen to a thing I said. But, he agreed to refer me to a neurosurgeon and also told me he’d order a second MRI to check for Syringomyelia. A few weeks later, after hearing NOTHING, I call and find out he never ordered the MRI. Still haven’t had it. Since then, I’ve called his office every week asking if they’ve referred me to the NS yet. I’ve been polite, considerate, patient, and I’ve been suffering horribly waiting. They keep telling me that they’re “working on it” then make an excuse and hang up. I just decided to call OU Neurosurgery myself to find some answers and guess what? My NL NEVER CALLED, NEVER REFERRED ME, didn’t do ANYTHING!!! I’m so ticked. Beyond. I don’t even know what to do.

Do you have to have a referral? I ask because not all insurances requires this. I actually called and made my own appointments with both neurosurgeons after seeing a horrible NL to begin with. I also called and asked my primary doctor to order the full spine MRI and the CINE MRI which she did for me. So I avoided the referral's all together.

I hope you get something figured out soon!

Good advice…I, too, referred myself to all of the neurosurgeons that I saw. If your healthcare plan allows you, you should do your research on the surgeons and make your Own appts. Also, it may be a blessing that you hav’nt had the other MRI yet. Many of the surgeons like to order their own with special instructions. Also, beware that you may have to talk to more than one surgeon before your case is taken seriously. I would recommend making an appt with a chiari specialist. Dont give up after a doctor tells theres nothing you can do. I wish you the best of luck!

Thank you all- I’m going to get a referral from my family doctor since I have to have one to see the NS at all. I do plan on doing a ton of research! This whole process is so frustrating- but knowing im not the only one who’s gone through it makes it a little easier.

Hello, sorry if I’m doing this wrong, just joined today… May I ask what pills he thinks will fix you but make you a zombie?? I ask because before my Neuro discovered my chiari (that I’d forgotten about from childhood) I went to her for persistent headaches and she put me on Gabapentin. Now my lack of focus and word finding, completing sentence etc is SO much worse than before… Wondering if he put you on same… I feel your frustration! I agree with above poster about trying to find your own NS. Good luck!!!


Just wondering if you got the referral for NS yet? If so, when is your appointment?? Keep us posted, ok??

Kat, so sorry I didn’t reply sooner! He wants me to be on both Topamax and Propanolol, high doses, and I followed his orders for almost 4 weeks and let me tell you… I don’t remember most of January. I slept. ALL THE TIME. Like, 18 hours a day of sleep wasn’t enough. And when I was awake, I couldn’t remember things, I felt fuzzy headed, and I was sluggish. I told my NL this, and he laughed. LAUGHED. And told me that at least I wasn’t having migraines. Which I wasn’t— because I was ASLEEP!! I disobeyed him because he flat out told me that he would not authorize me to stop. I did, and migraines aside, my life has been 10000% better! Although my migraines and other symptoms have been getting MUCH worse over the last few months.

And I called my NL again on Wednesday, and they assured me they would fax it immediately, but I called OU yesterday and guess what? No referral. The lady at OU sounded irritated with my NL as well and told me she would personally call them and she WOULD get that referral-- I’m so glad! I should be getting a call on Monday! I’ll keep y’all posted- thanks for being there!