Today I finally had my NS appt, my actual time with NS was less than 10min, he never asked about my symptoms or what makes them better/worse....I tried to explain to him that I seen an opthamologist last week, and that my peripheral vision was decreasing due to pressure on the optical nerve, didn't get any type of response from NS....tried to discuss my other symptoms, he didn't respond. The only thing he did was introduce himself, used a needle to prick my face & feet, and had me touch my finger to my nose then to his finger. The nurse who brought me to the room, did not ask me any questions, just handed me a gown to change into.
He ordered a CSF flow study, insisted it be done at his hospital, even after I explained I lived 2.5 hours away....fortunately after a 4.5hour wait I was able to do it this evening.... However while scheduling it, the office person had trouble putting in CSF flow study because its not commonly ordered (red flag?).....then when I was at MRI for the flow study, the tech didn't know if I was supposed to have a Cervical MRI, Brain MRI & the CSF Flow Study, or just the CSF Flow Study, and by that time the doctor's office was closed, so he opted for just the CSF Flow Study and had to re-do it twice......i'm not even kidding.
I was not given a follow up appointment to discuss my CSF Flow Study.
Was my visit a normal first time NS consult? Should I be concerned? Right now I'm totally disgusted and upset!
I don't really know what's "normal" for a visit. I went to a ns here in Indy (not Goodman Campbell) and she didn't order a cine but said she thought I needed surgery and if I wanted it to call and let them know within 30 days. That was it.
I looked at Goodman Campbell online and didn't really see anything that impressive about the surgeons as far as Chiari. So I went to Mayfield in Cincinnati and it was a lot different. They know Chiari and they know what they are doing. I was actually impressed with the length of time that they spent with me at Mayfield. My first ns appt here in Indy was about 15 minutes.
my csf flow study showed a diminished flow, got an email from the NS that said come back in a few years to do another mri and flow study...... seriously, that is what the email said.
Wow! Did you just receive this information? Come back in a few years! I'm speechless. I thought my first NS was bad, but that's crazy. I would definately find another NS! I asked my PCP if he could send me to another NS after my bad experience and he set me up an appointment with Dr. Holly Gilmer in Royal Oak, MI. So I'm hoping this goes better than my first. Ask your PCP, they should be able to refer you to someone else, and if you know of a good Chiari Dr. near you maybe you could ask your PCP to send you there. That way you can hopefully avoid this kind of treatment in the future. Good luck, and I hope you get some answers soon.
well unfortunately i've been to 2 different NS in Indiana, the first one gave me the email reply...... the 2nd one said that everyone previously misdiagnosed me and that there is no Chiari ordiminished CSF flow. Yep, hard to find an educated NL or NS in Indiana. Insurance refuses to approve out of network. However, today, the Cleveland Clinic agreed to see me as a self-pay patient (initial consultation $745) and my appointment is June 18th.
Since all of these symptoms started occurring after a rear-end collision and my PCP has agreed to write a statement to the fact that I was perfectly healthy prior to the accident, the attorney says this out of pocket expenses will be added to the injury claim.
It's all so frustrating......and sucks that if I were a medicaid person, I could go anywhere for treatment...... but my health insurance says I have to stay in network.
I'd be slightly concerned. I mean, when I went to my appointment, I was in the office for about 10 minutes also. I didn't really express many of my symptoms, but I kinda assumed he knew what my symptoms are because he saw my MRI. When I left his office, I didn't make a follow up appointment. That's probably because we already agreed surgery was the best and set a date. If i were you, I'd already be looking into a new surgeon. Don't let someone operate or order you for tests if you aren't 100% comfortable with him. I'm sorry you're having so much trouble with this. I hope everything works out for you!