Wednesday, April 23, 2008

terminology

The end of last year, when I was still seeing neurologist #2, I remember questioning the need for an accurate diagnosis. After all, chronic head pain is chronic head pain, and I need to find an effective preventive regimen regardless of what kind it is. It was about this time I began to wonder if I needed to consult with an actual headache specialist - someone who dedicated their practice to the study and treatment of headache and migraine - rather than just a neurologist. Since neuro #2 began to run out of ideas, I decided a fresh pair of eyes on my case wouldn't hurt, and I asked for a referral to a specialist, AKA neuro #3.

I was fortunate (I thought) to get in with neuro #3 in about two weeks. She was just coming back early from maternity leave since the other neurologist in her practice was leaving, and had not scheduled any patients yet, so I was at the top of the list. So I had virtually first pick of appointments and was able to schedule fairly quickly. The first appointment went well, and after looking at the list of five preventives I had trialed and failed, she wanted to try me on Botox, her main interest and area of research. If that didn't work out, we would retry me on Topamax, since I hadn't given it enough of a trial the year before.

After two months of waiting around, my insurance rejected the pre-authorization claim for Botox, labeling it "experimental". After a number of phone calls, she had finally agreed to write me a script for the Topamax, and once the insurance rejected the Botox I scheduled another appointment with her to discuss my options.

I had this appointment with her about a month ago. I went in well-prepared with a list of questions, and brought DBF with me in case he had any questions. For some reason, this appointment didn't seem to go as well as the first. Neuro #3 went over all my questions with me, but was completely unwilling to even discuss the possibility of rescue meds - saying simply that "they don't work" - and didn't want to discuss any treatment options for my daily migraine pain. When I asked her the difference between chronic daily headache and transformed migraine, she said they were different terms for the same diagnosis, and implied that my ongoing migraine is simply a headache - an implication I did not pick up on right away.

After the appointment, I had a weird sense of hopelessness I couldn't immediately pin down. The following week, my daily pain spiked again, so I decided to call in to try for an IV treatment, which neuro #3 had reluctantly offered to me as an option when I questioned her about it, with the caveat that it wouldn't do much for my "regular daily pain". It took me five days to get in for this treatment because of her irregular schedule: she typically only works three days a week. This scheduling mess, coupled with the feeling I couldn't shake that she had given up on me when the Botox was denied, finally pushed me to fire her. (My mom later pointed out to me that since I couldn't do the Botox, my doc had demoted me to her B-list of patients.)

Fast-forward to this past weekend, with all these strange symptoms I've been having. I called into the nurse's line early Monday morning to leave a message about the new symptoms that cropped up over the weekend. I got a call back - which I missed, of course, so the nurse left a message - saying that they would pass the message along to my doc on Tuesday when she was back in the office.

Tuesday (yesterday) afternoon, I finally got another call back - which I missed again, because they only ever call when I'm in a meeting at work - with a message from a different nurse. Neuro #3 said the symptoms were probably not from the latest IV treatment, and "may be" related to the "headache". If I still had some concerns, I could schedule an appointment with her nurse practitioner, and here is her phone number. Click.

Are you kidding me??

This short message confirms my instincts in firing this doctor's sorry butt were correct. She will not even call this migraine a migraine, only a headache. But now it makes more sense why she was so unwilling to offer any treatment for it, since she thinks it is only a headache, not worthy of any treatment.

So, it's on to neuro #4. I have an appointment scheduled with him on May 21, four weeks from today. I am much more encouraged by his office than by that of neuro #3. His staff is much more polite and helpful. I received my new patient information packet in the mail within a few days of my appointment being scheduled - rather than the day before my appointment - and the forms are much more detailed, including a depression screening form. I'm just very glad I didn't wait to move on to a new doctor and went with my instincts about neuro #3.

Now, I just need to get through the next few weeks.

2 comments:

rain gem said...

Wow, that is a lot of doctors you went through. Here's hoping #4 will work out better :) .

MaxJerz said...

Thanks, Rain Gem. I'm keeping my fingers crossed. :)