I know I can be kind of persnickety at times, but some things just need to be a certain way. I mentioned to my doctor that I had been thinking about Idiopathic Intracranial Hypertension (IIH) for over a year as something I might want to rule out and wanted her opinion on it.
There is no definitive test for Migraines, but a whole slew of tests to rule out other things. That's kind of the way I was looking at this whole thing. I have become very frustrated with Migraines and I just want answers or something that will help reduce or stop them.
I didn't approach her in a demanding way. I honestly wanted her opinion plus I laid all of my cards on the table because I don't like game playing. I mentioned that I knew you didn't need to have papilledema in order to have IIH and even knew of a few people who have IIH that don't have papilledema. I have a few concerns about the test which I did not bring up to her as when she started answering me, I didn't get what I've come to expect from her.
This month is actually two years that I've been with her so we know each other pretty well. She is the doctor I've been with the longest and although I trust her, she also listens to me when I talk about new ideas or theories I come up with. If she doesn't necessarily agree with me, she will give me her opinion and then give her reasons behind her thought process. This is the best way to deal with me.
When I brought up IIH, I know I brought it up in a very tentative way because I didn't want to come across as my way or the highway. I wanted her opinion. Although I didn't come out and say how frustrated I am right now, I know it was in my voice and mannerisms.
When she responded, she started off by talking about my having thought about this for so long. For me, this is just the way I am. I need my 'think' time and to feel like I have researched something enough that I can talk intelligently enough around a subject so that I can ask pertinent questions, not have the wool pulled over my eyes, be able to make an educated choice and sometimes to see how informed a doctor is in a particular area or how they react if they need to brush up. In this case, I just wanted her opinion and to take it from there.
After the empathy part of her talk, she started telling me to be careful about what I read. I knew immediately she was referring to "medical student's disease", but I'm sure they call it something else for us internet folks. Medical student's disease is a condition many medical students contract when they perceive themselves or others to be experiencing the symptoms of the disease they are studying. Another one of the reasons it takes me so long to research something is that I want to rule out medical student's disease or whatever they call it for us. Do you know if there's a name for us?
Anyway, she proceeded to lecture me on that. I know I don't take well to being lectured plus because I am not convinced I have IIH and would like to rule out anything at this point because I want to reduce my increasing Migraines. I also have a couple of other theories to go on right now which was another reason I went in a little softer on the subject. It also let her know some of the things I have been thinking about and I truly wanted to get her opinion on the subject.
She did go through everything I would need to do before I could have the LP test done. She told me I would need to go to a neuro-ophthalmologist and have a CT done before the LP. There was another thing she said that really bothered me too. She said that since I'm not obese, I would probably get a spinal headache. As silly as it sounds, I believe in positive thinking. I believe I would not get spinal headache, but will know what I need to do just in case I did. At the end of the appointment, I knew there was something bothering me about this whole appointment, but I just didn't know what it was or what I wanted to do next. I left the appointment where I came in only with a lot more to contemplate.
I know I am not the same patient I was with my first neurologist where I started off as the typical dishrag. After learning about Migraine disease (not from my doctor) and how to stand up for myself, I fired this first neurologist after she actually tried to discourage me from doing the biggest thing that has benefited my Migraines the most to date. I realize that I can probably be a challenging patient at times, but that's not something I'm willing to change.
Now that I figured out what was missing from my last visit, I will plan to bring it up during my next appointment along with making sure she understands that I am very frustrated. I want to make sure she knows where I stand.
2 comments:
Thanks for sharing this. IMO, your approach is excellent, and I admire your way of going into things expecting the best, not the worst, avoiding the old self-fulfilling prophecy. I've not heard that weight has anything to do with whether or not people get a spinal headache after an LP, but that may be so. It had never occurred to me that I might have IIH until my Migraine specialist suggested an LP to rule it out. I'm so glad he did. (And I did not have to see a neuro-ophthalmologist or have a CT scan first.) It turned out that I do have IIH, and it was triggering the half of my Migraine for which I couldn't identify the triggers. He drew off enough fluid when he did the LP to put the CFS pressure into normal range. It's been kept there with medication. Once the IIH was managed, we were also able to find a preventive regimen that works for me. That's certainly not the case for everyone, but IMO, it's a reasonable thing to rule out.
Right after I got home, I did a quick search on LP, weight and spinal headaches. I actually found a couple of hits that made this connection.
I would probably object to the neuro-ophthalmologist if I didn’t have such a bad visit with my optometrist last year and had instead gone to an ophthalmologist then. Although the optometrist took pictures of the optic nerve, he had a lot of errors during that one visit. I think I would like to eventually rule IIH out.
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