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Migraine Specialist Shortage: My Frustration

In a recent article for Migraine.com I shared information from research presented at the June 2013 International Headache Congress about the shortage of Headache Disorders specialists in the United States (Severe Migraine Specialist Shortage Limits Care). While I am completely grateful the United Council of Neurologic Subspecialties (UCNS) has a certification in Headache Medicine, because of my geographic location I find myself frustrated every time I search the list for options close to me.

toc105I live in a town of about 100,000 people slightly outside the Kansas City Metro area. As you may or may not know, Kansas City spans two states: Kansas and Missouri. So while there are no UCNS-certified specialists in Kansas, I scour the list for specialists in Missouri, too.

On the most recent list there are only two Missouri-based specialists in the Kansas City Metro area. And both treat the pediatric population exclusively. All others are located either in Springfield, Missouri, which is about seven hours away from me, or the Saint Louis Metro area on the opposite side of the state.

It’s just so frustrating. As I’ve discussed in the past, I used to see a doctor in the Dallas area for treatment, which, like Springfield, was a seven (or more) hour drive from my home. Through trial and error we learned that flying in to Dallas didn’t save us any time when you consider the airport wait and the need to rent a car once we got there. Driving was definitely the best option, but quite a burden.

The sad thing is that without anyone in the Kansas City area practicing headache medicine in adults, I believe the specialist desert is unlikely to change anytime soon. This is mainly because it is highly unlikely anyone is going to come put out a shingle here without an established group to join. It’s just too risky and expensive.

The silver lining of my situation is that I can basically go anywhere in the country for treatment when I’m ready to seek out a new Headache Disorders specialist. My family is completely on board with that way of handling things, so we can seek out the very best care for me. I’ve become acquainted with some brilliant Headache Disorders specialists through my attendance of American Headache Society conferences and participation in AHMA, an AHS project and Headache on the Hill.

I’ll definitely keep you guys posted. In the meantime, if you’re interested in seeking out a UCNS-certified specialist in your area, please visit this link:

UCNS Diplomates in Headache Medicine

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Dstengerzook
    6 years ago

    Hi There! I am so glad to have found this! I am from the Kansas City metro area as well. I have chronic severe migraines and Idiopathic Intracranial Hypertension that is being treated with a lumbar peritoneal shunt and a stint in my brain. I see Dr. Arthur Dick as my neurologist, Dr. Thomas Whittaker as my neuro-opthomologist and Dr, Camarata as my neurosurgeun. All are at KU medical center. At this point I spend about 1 to 2 weeks a month in the hospital due to severe migraine pain. They hook me up to thorazine drips, depakote drips, decadron, magneseum drips, DHE, benadryl and toridol. None of these work for me at all. When I’m not in the hospital I use Topirimate 100mg twice a day, Amitriptilyn 75mg,and a host of other medications for other medical issues. I also take Thorazine for rescue at home…but it isn’t working. In the past year I have had 4 brain related surgeries and spent more than 12 weeks in the hospital due to severe migraine pain. I recently was given IV stadol an then sent home with the nasal spray.It actually helped. It was the only thing that has helped my migraine pain besides dilaudid. Then when I ended up back in the hospital they told me I should have never been given stadol and they refused to give it to me and put me through a week of all the drips that don’t help. I ended up leaving in just as much pain as I went in with. After about 3 weeks I couldn’t take it and went to St. Luke’s emergency room and they gave me stadol to get me through to my appointment with Dr. Dick. I saw him and he told me stop the stadol..upped my thorazine. Here I am mid-migraine again and I did what he said…it didn’t work. What do I do when the doctors won’t listen? I totally understand why my doctor doesn’t want me to use stadol..but I have tried everything I can and nothing works. Where do I go for help? I also have no health insurance.

  • Betsy Thompson
    6 years ago

    Thank you soooo much Diana for the Dr.’s names here in Springfield!! I so appreciate this. I have been thru the headache clinic and the pain clinic here with no success to this point. So, I decided to be my own patient advocate and be proactive in my search. I see my primary care Dr. on the 26th of this month and now I will have some names to give him for referrals. Hopefully, they will be able to help me out! I wish you less pain and more fun this weekend!! 😉

  • Michael Fernandez
    6 years ago

    What an excellent article I couldn’t agree with you moer Diana. I always forget how fortunate I am living so darn close to New York City with access to some of these top headache specialists at large hospitals! Thanks for making me appreciate what I have!

    My mother will be entering her M.S. in nursing soon we hope and my goal will be to raise awareness throughout her time learning of this shortage to medical students of all sorts to get the word out!

  • Diana-Lee author
    6 years ago

    Dr. Cady established and runs the only headache clinic I know of in Springfield.

  • Diana-Lee author
    6 years ago

    Thanks! I’m just lucky my family is in a position to help me get the best care I can find. So many other people in my situation aren’t as fortunate.

  • Betsy Thompson
    6 years ago

    Diana, I do live in Springfield, MO and would LOVE the names of Migraine specialists here, if u still have them, I did find two listed on the link that you had on unc? anyway, on that list and I do plan on contacting them. I went to Mercy/St.John’s “headache” clinic and the nurse practitioner that I saw said that the only thing left was the Botox injections. Welllll, I’m not ready for that yet, so my next plans were to get a referral to see a neurologist, since I haven’t seen one before, and I thought I’d see what he/she had to offer me. Although, now, I may hold off on that and call one of the two names I got off the list tonight. If u can assist me, I’d appreciate it a LOT! I also am bipolar(manic), so I can’t take any of the antidepressants, or the triptans, for preventatives, and we tried propranolol and all it did was lower my pulse too much. Right now, I’m eating OTC generic Exedrin headache relief formula, but I’m getting too much aspirin for my tastes. Anyway, sorry for the novella here…lol! I am just getting tired of the constant headaches…had one every day since July 31st, maybe longer. Thx for listening my sister with chronic migraines! 🙂

  • Diana-Lee author
    6 years ago

    Hi! Dr. Roger Cady and Dr. John Dexter are both in Springfield, Missouri.

    It can be easier to sort through the Diplomates list by using the Find function to search for a city, state, or doctor’s name.

  • JayBaby
    6 years ago

    I have migraines with aura. I have had them for over a year. I am seeing Dr. Jason Day, a Neurologist with Saint Luke’s Hospital in Kansas City, MO. He found 3 white spots on my brain. I really like him a lot.

  • Ellen Schnakenberg
    6 years ago

    Hi JayBaby, I’m so glad you’re doing better with Dr Day. However, he’s not a Migraine and Headache specialist. You can find a link to the current Migraine and Headache specialists by clicking here: http://migraine.com/blog/looking-for-a-migraine-specialist/

    ~Ellen

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