Facing It
The neurologist’s visit was…interesting.
I left my house at 7 for my 9:15 appointment and I arrived at the doctor at 10. The 3 hours it took me to go those 46 miles, which did some really fantastic things to my stress and headache levels, trust me. Even the doctor noticed that I looked subdued when she finally saw me. Frankly, the fact that I was even upright by that point made me want a freaking trophy.
The appointment itself was pretty quick. I had decided before I went in there that I needed a medication break. I need to be clear-ish headed at my clinical and that means no crazy meds right now. I can’t deal with side effects and hands-on learning all day long. It’s just too much.
The doctor wasn’t thrilled, to be honest, she’s still really displeased with my education/career choice, but she understood about the medication/side effects and thought it was a reasonable idea.
I had also brought with me an article that a friend found about a woman with the same symptoms as me and the exact same opening pressure who was determined to have a Vitamin A deficiency. (Vitamin A is important in the production of CSF, so logically, it makes sense that low Vitamin A = low pressure). We talked briefly and she said for now to just try a multi-vitamin and we’d reassess things in a few months.
The other option that I asked about was one that she and my neurosurgeon both mentioned in passing. Wearing a tight brace around my stomach should increase the pressure in my head via some mechanisms that are not all that important. She agreed it was worth a try, gave me a few brands to look at.
And that was pretty much it. Literally. That was pretty much it.
I’m not really sure how I feel about it.
On the one hand, I’m trying new outside of the box things, which I appreciate. On the other, I feel like I’m being my own doctor right now. I don’t fault my doctor for this, but I guess I was hoping that when I came in she’d have some ideas stacked up and, well, she really didn’t have anything. If I hadn’t suggested the vitamin and the binder, I’m almost entirely sure they never would’ve been considered, period.
And now I’m mostly just considering things. Because come August, I have to commit again. I only get one neurology referral for the next year and I’m honestly not sure if this is the right doctor for me. She’s very kind and I’m sure very knowledgeable, but I don’t know, there’s something that just doesn’t fit. It’s hard to articulate this because I honestly don’t even know what it is. I just feel like I’m not going to get anywhere with this doctor.
But then there’s the possibility that it has nothing to do with the doctor at all.
There may not be a neurologist who is a good fit. There may not be one who is knowledgeable in this area because “this area” of neurology isn’t really an area at all. It’s just me. It’s just me, not fitting into any categories of pain that are understood. Not falling into any protocols that could help. It’s just me.
And that is a little scary.
But it’s life. And if there’s anything I’ve learned in these past 11 months, it’s that life is scary. And so I’m just going to keep moving forward, keep thinking, keep researching, keep learning. Keep facing this fear.
This fear that is my future, my life. My everything.
21 Responses to “Facing It”
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Welcome! I'm Katie, a 28 year old, full-time graduate student who just happened to have brain surgery in November of 2007 to give my ginormous brain a little more space. This blog chronicles my daily life, from relentless headaches to being a doctor's wife. Sit down, get comfortable and stay for a while.
I hope you can find someone who can help you. If you’re not comfortable with her, I think I’d change. At least in my case, if I’m not comfortable with someone it effects me phsicalky as well as mentally. XOXO
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I think what you’re looking for is a doctor who is a leader in your treatment. Rather than a follower. I hope you find one.
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I agree with the other posters that you should find a doctor you like and that you click with. Go for it! AND I don’t know if you’ve noticed but since you started your clinicals your outlook on things has done a 180. You are much more positive and don’t seem to dwell on the pain as much anymore. I have no doubt that you still have the pain but you don’t seem to be letting it be as big a part of your life. I don’t want that to sound shitty because I don’t mean it that way. You just seem so focused on finding a fix on your own and loving work.
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Katie Reply:
July 14th, 2010 at 7:53 pm
@Jamie,
Oh, I’ve noticed it. I’ve had a couple of days that were real struggles, but doing something that I really enjoy and having my attention forcefully focused on that has helped tremendously. And if anything, it’s just making me more focused on getting this dealt with so I can do this job in a few years without pain.
You don’t sound shitty at all. It’s nice to know that the change is noticeable to others too.
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I have had some chronic medical issues myself. One’s that required specialists and all that fun stuff – nothing as bad or as painful as your situation – but it is enough for me to have experienced that moment of wondering why it seems like you and your own doctor, doing your own research and such. It’s frustrating.
I never did find that magic bullet doctor. I just keep doing my own research and bringing it in. I’m sure they hate it.
I dunno…I hope the vitamin and the brace help out.
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1. I’m still really hoping that one of these “easy” solutions works.
2. I’m loving your new blog design.
3. I love you & cannot wait to see you SOON!
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Did the Vitamin A deficiency person have a neuro that might be a possibility to consider? It seems like that doctor might have thought outside of the box, if he/she helped the person you mentioned.
Glad you have some new things to try…. I keep hoping one of these days you’ll write a post that is titled “Miracle Cure!!” and then I will cry happy tears of joy. (Also, I totally just typed Miracle Cute instead of Cure and I’m still snickering about it.)
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Just reading your post reminded me of of the first round of doctors after I was diagnosed with fibromyalgia. I tried what the doctors wanted me to try and then did my own research because they kept saying “I don’t know what more I can do for you”.
I was lucky to find a doctor that was willing to work with me and try the things I researched. Of course nothing ever “cured” me of fibromyalgia…but at least I don’t feel “stuck” like so many other people diagnosed with this. Check out this post and you’ll see what I mean: http://www.fibrochondriac.com/2010/07/11/doctors-really-dont-get-it-do-they/
I hope you have more luck than I have had in the cure department. But, according to this doctor I’m just an old whiner that refuses to get healthy. As if!
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I can understand your hesitation. I’m procrastinating about going back to my neuro about the Chiari I. On one hand, he’s meh at treating my other major issue, RSD, especially since my last neurologist was known as the world expert in that disorder.
You’ve no doubt done your research. Who on the west coast has written papers, done research, been named in articles and papers on Chiari or might even be on the NNI’s list as a specialist? My cursory research for the east coast seems to have a cluster on LI, where I grew up.
Are you unlimited in initial consults until August? It would really suck to spend the next year tied to someone who may not be proactive about your situation.
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Katie Reply:
July 14th, 2010 at 10:05 pm
@Suzanne, Well, the thing is, the chiari really isn’t the problem as far as we can tell. I have unobstructed flow of CSF and while I’ve still got multiple mm of herniation, it seems to be sort of the opposite of typical chiari (high pressure) symptoms.
So the guy who does all the research and writes all the papers on low pressure is my neurosurgeon. He’s SUPER knowledgeable, but even he has no idea what to do. So I’m sort of stuck. I mean, do I go to a chiari specialist who may or may not know how to deal with intracranial hypotension? Or do I keep looking for someone know knows about IH and not as much about chiari?
It’s annoyingly complicated.
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I don’t think you are going to like what I have to say….
It’s been 22 years since my first illness (cancer) and 6 years since being diagnosed with fibromyalgia. I have gone MANY years with symptoms that my doctors did not understand & turns out, didn’t diagnose properly–like my symptoms of dysautonomia.
I really get it that medicine does not have all the answers. Sure, doctors understand some things really well, like my cancer. But when it comes to other things, like all the long term and late effects from my treatment & what to do about those, they really don’t know what to do. And in some very real ways, I am broken and can not be fixed, like the permanent damage to my nervous system caused by the chemotherapy that saved my life from death by cancer.
All that continuing medical education doctors are supposed to do, plus all the journal reading and keeping up with the latest information … just doesn’t really happen (unless they are mentoring medical students and interns, in which case they probably do more than your average MD.) Seems like a lot of what they learn comes from drug reps and what ever is generating the most buzz on TV/newspaper/cover of the New England Journal of Medicine.
So for me, it becomes about finding doctors who are open to discussing options with me. It’s more of a collaboration than anything. I can’t be upset that the doctor doesn’t remember every detail of my file, because that’s my job to remind them. I’m not looking for someone to cure me, just figure out if it is reasonable to try the newest treatment. Which means I have to do the research, present it to my doctor and get their opinion. So I can’t see a doctor that has a problem with me bring things to them. And I can’t expect them to tell me what to do because I have already exhausted Plan A (where they knew exactly what to say and do) & we are now into uncharted territory.
I accept that I am Humpty Dumpty & all the doctors in the world are not going to be able to put me back in complete working order again. But I am also 22 years into this and probably just worn down by all the running around I did when I was younger trying to fix my health problems.
I want to believe that you are going to be the exception & you are going to find a cure for what ails you. You are young & smart & ambitious & you don’t need chronic illness dragging you down, changing your dreams & throwing Mt. Everest across your path.
I know what you want to hear & thinking about anything else is absolutely frightening. But I honestly believe you are stronger than you think you are & you can deal with whatever life holds for you.
I am truly sorry that you have to go through this. I really am.
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Katie Reply:
July 15th, 2010 at 7:53 am
@Selena, I nodded the whole time I read your comment. I don’t disagree with you at all and I’m not at all unhappy with what you wrote.
I genuinely think that there aren’t any doctors who probably know what to do with me. I doubt that I will easily be put back together or ever get that miracle cure. And not only is continuing ed a problem with doctors, but there isn’t even really anything to read about intracranial hypotension, so it’s not something I expect very many people to know about unless it’s a field of interest for them.
But I guess here’s the thing. When a doctor tells me that they’re going to research options for me and tells me that they’re going to try to learn more about a condition, but then a month later admits that they totally forgot everything about my case, I get disheartened. It’s not that she’s not a good doctor, because we both know she is and of course she is busy and has other patients, and I don’t begrudge her that.
But I think she’s not a good fit for me. I do feel like I can discuss treatment options with her for sure, but I also got the feeling that if I didn’t come in with a bag full of things to try, I may have walked out there empty handed. And granted I haven’t seen this doctor much, but I feel like I need a doctor who is a little more opinionated. I know it’s a fine balance between opinionated and forceful/unwilling to consider things they’ve never tried before, but I think that’s what I need if I can find it.
Does that make any more sense? It’s not that she’s not a good doctor, because she is. It’s not that I think that there’s another doctor with the miracle cure because, dude, I doubt it. It’s just that I don’t think that this doctor and I are a good fit to spend the next however many years trying to get a handle on what’s wrong with my brain.
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Selena Reply:
July 16th, 2010 at 3:21 pm
@Katie,
I really do understand where you are coming from & you do need to find a doctor that is a good fit for you. I hope you are able to find someone that fits the bill. And if you do, please let me know because I might want to try them out too!
I used to think that if I were a doctor, I would be the exception & do all the research to figure out what is wrong with my patients & what options existed for them. You know, someone like House, but with a better disposition & bedside manner. But I haven’t really found any doctors like House in all the years I have been going to the doctor, which makes me wonder about the medical establishment in general and their real commitment to helping patients.
Then I read this post which seemed to address the situation and thought I’d pass it along: http://fdgrm.th8.us Although really, it doesn’t seem to address the lack of a true science-based approach to figuring out medical puzzles like you and me.
I’m sorry that it didn’t work out. I really am. And I agree with your critique of her, btw. I can see where you would want more…
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Katie Reply:
July 16th, 2010 at 7:02 pm
Don’t you dare apologize for anything. You gave me something new to try and for that, I am incredibly thankful. If I find a doctor I’m in love with, I’ll let you know as soon as is possible.
Katie ~ trust your instincts ~ there has got to be a doc out there who can make some sense out of all your symptoms.
I have chosen the non-meds route because living with the side effects of medication on top of symptoms can just about send me over the edge, never to return. I can’t remember the situation with your insurance, but is there ever a possibility that you could go to Colorado and see Dr. Oro? I think as far as Chiari specialists go, he’s the closest one to you.
http://www.auroramed.com/conditions_we_treat/chiari_malformation/
hugs ~ Lace
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A comment on the multivitamins: I had a huge upswing in migraines last winter. I finally figured out that they were due to the vitamins I had started taking religiously around then. The biggest suspect is the over-the-counter multi-vitamin, but I haven’t gotten far enough in adding vitamins back in to my life to find out for sure.
I first made the connection when another thread I follow had a couple people comment that over-the-counter multivitamins caused migraines for them.
So that is just a thought. I would recommend that you find the best quality multi-vitamin you can. Something with no preservatives or additives. I haven’t researched what the good ones are, but you can probably find some good resources who can. You might not be sensitive to whatever was causing my problem, but why add that possibility into the mix.
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Katie Reply:
July 15th, 2010 at 8:29 am
Susan, this is a great tip and I will definitely look into it. Thanks so much for letting me know!
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Okay, this pissed me off ROYALLY!!
I suspect that if you arrived with an idea that included an expensive prescription as a treatment that would have been taken care of but just letting the Vitamin A deficiency theory lie there like a useless piece of trash when you are still in pain is SO AGGRAVATING and I’m not the one with the headache!!!
Why don’t you have your Vitamin A levels checked yourself? It’s quick, cheap and easy:
https://www.mymedlab.com/products/150
As for a good multi-vitamin, try MegaFood or New Chapter- they are whole food supplements (obviously, wait until your test results are back):
http://www.megafood.com
http://www.newchapter.com
Also, from what I understand a Vitamin D deficiency is also related to migraines. The one I like the most are the Carlson Vitamin D Drops (2,000 IU):
http://www.carlsonlabs.com/p-234-ddrops-2000-iu.aspx
Alright, excuse me while I hop on down from my soapbox…
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Katie Reply:
July 15th, 2010 at 9:49 pm
@GreenInOC, To be honest, I was kind of frustrated by that too. I guess I understand wanting to see if a multivitmain got my levels to “normal” and to test then, but also, what if they’re already normal and I’m overly increasing them? I definitely need to up my vitamin D too, it looks like I have some reading to do.
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purplebreath Reply:
July 16th, 2010 at 3:10 pm
@Katie, I missed that she didn’t bother with checking them. Any chance Slappy could order that test (and not run it thru insurance)?
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Katie Reply:
July 16th, 2010 at 7:03 pm
Meh, probably best for all of us that we don’t abuse any of his power as a doctor just yet. And when we’re going to, it really should be for fun drugs. I mean really.