“It’s What We Call Intractable”

I had my appointment with my neuro. His nickname is the headache guy, because he only treats headaches, and he is really great at his job. At my last appointment in October, my MRI findings indicated a primary cause to my pain. He had a lot of theories, but needed to do some more work to determine what, if anything was causing my pain.

My appointment started out with him asking a lot of questions about my life, what I do outside of school, friends, family, relationships.. Which was very odd for him. He was usually only interested in the medical facts. But this questioning went on for a while, until he clued into my confusion. He proceeded to tell me he was trying to determine if I was depressed, but found no evidence for it..but continued on to describe all the things he looked into, but to no avail found nothing. “They’re what we call intractable… meaning we can’t fix them nor do we know what causes them. The only treatment option that I see is a thorough trial of Botox” 

I’ve never wanted to try Botox (onabotulinumtoxinA) , nor do I want too. Ever since it was approved, people have been shoving it down my throat left right and center, but the data is dodgy, and I want good, solid scientific proof. 

My physician pointed me to the PREEMPT trials, and I’ve decided to give it a go after scanning both trails, and a lot of the supporting documents and lit reviews available for botox .. He recommended at minimum 4 rounds before ruining it out.. Thank god for prescription coverage. 

this doctor reminds me of a detective. He seems to love the mystery of migraine and headache disorders.. And it he seemed truly upset that he couldn’t figure out my mystery..

I’m not 100% settled with his conclusion. I assumed he was going to tell me this is my life, but I was still holding out for new hope. 

I’ll always be holding out for new hope. Because really, what else is there? 

The week from Academic and Appointment Hell

I’ve been both dreading and eagerly awaiting the week for weeks now. On the academic side, I have an annotated bibliography, needs assessment report, midterm, lab test, poster creation, presentations and I’ve been planning a program for my local university. Needless to say, this week academically is very very busy. In addition to all the crazy school stuff, I have two volunteering commitments AND two major appointments “scheduled”

So, late last week I had realized I hadn’t received any confirmation calls, which I always have. So I decide to give both my neurologist and pain management offices a call to double check that I didn’t miss the call..

Yesterday, I heard back from my pain management clinic, which was scheduled for Thursday at 2PM and I’ve had this appointment since September. Apparently whomever scheduled me failed to realize that my physician never works on Thursdays, and that I would have to wait till the next available appointment with her which is on May 12th…. So I was annoyed that I would have to wait an additional two months, but since I was scheduled to see my Neurologist this week, I was less of an issue.

This morning, I received a call from my neurologists office stating that I did not have an appointment this week, and that instead it was two weeks from now, This is when I started to get very very angry. When I received this appointment date months ago, I had immediately called the office to change the date, as I am not available. I had even received a confirmation letter of my appointment for tomorrow morning at 9:30.. My only option at the time was to wait until June for his next appointment.. :/  BUT thank my lucky stars, someone cancelled tomorrow so I will end up seeing him, and I have no idea what to even think about tomorrow…

The plan of my neuro appointment tomorrow is for him to tell me what is wrong. If my CM is primary or secondary, and whether or not my Chiari malformation is rapidly growing (Initial testing shows the development of a 6 MM herniation in 4 years, instead of my entire life)

I’m afraid I am getting to hyped up about this, and that he is going to let me down like he has before.. I’ll update you guys tomorrow (as long as nothing goes wrong) or by the weekend!