I received notice today that my neurologist is being forced to close her office. I knew this might be coming as she has been ill. I need to find a new neurologist in my area ASAP.

I know awhile ago a survey was done asking us to name doctors we see and I assumed that a list was going to be made. If it was I can't find it. Does anyone know if such a list was made and if it is available?

Thanks,
Bill

Unless you can verify that a neurologist has good experience and training in treating headache, you'll better off with a headache specialist. (Neuros have strickingly little education in headache.)
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LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

Thanks for your reply!
I should have been more specific in my post I suppose. The neurologist I have been seeing is/was somewhat of a specialist with headache when I began seeing her a long time ago. When I found this this place I started to feed her information I was learning and my life changed. I am alive because of CH.com and her and I know what I need to do for me to stay that way. (I hope this last sentence doesn't sound pious, but I have worked hard to figure me out and for now anyway this statement is true. I know this can change so my approach and options will have to be fluid if it becomes necessary. A good new neurologist locally will make the proper referral.)

I was hoping to find the list, if it was ever finished, of recommendations from others, somewhat local to me, here at CH.com. I've been through the system of testing, diagnosis, experimentation, etc., and need only to have someone to order med levels once in awhile and renew meds and assure that I always have access to O2. Plus, my age is getting up there where the option of a long drive in the winter to an appointment isn't going to be wise. I don't live in a large metropolitan area but there may be an option or two within 25 or 30 miles.
Note: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE seemed to be a dead link, I tried to access it several times without success but discovered a typo.

        It doesn't sound pious at all to me.  Over the years of dealing with my wife's and my medical issues, and observing my friend's and their family's medical issues, the most important thing one can do to improve one's health care is find yourself an advocate. In most cases that person is you. Sometimes it's a spouse. You're just another patient to a doctor and if one relies 100% on them to set your health care path odds are the results are less than satisfactory. Ain't nobody knows you like you.
     Taking the reins and being in control ---- I wish I'd have learned that lesson earlier in life, maybe I could have prevented some of the bad medical procedures we allowed at a doctors behest.
     Hope you find another good doc.

                     Sean

Thanks, Sean.
I learned by surprise this morning I had to go to my "old" doctor's office to make arrangements for the transfer of my files and that I had only until 4:00PM tomorrow to do this. When I got there I found the office in the parking lot being auctioned off. It was sad. (Cancer is such a ruthless foe; it is so fast and so heartless sometimes.)
It turned out that since I only learned of this situation two days ago and hadn't made any decisions yet about another neurologist my records were simply handed to me as they were without question. So here's another way, I guess, I have control.

Hi Snyder...your latest reminded me of some bad memories re medical records that should serve as warning and motivation to others to get copies of YOUR records NOW.

Back around 1997 my PCP retired...he was in a multi-doc hospital practice so I just transferred over to another doc same office(neither knew shite about ch...but that's another story)...and assumed my records just changed labels. BIG MISTAKE. When I requested my medical records for another doc, was horrified to be told: 'oh, we destroyed those since Dr S. retired."

These were my entire LIFETIME records, as I had transferred previous into his office. I received no notice, they couldn't explain why they hadn't transferred to another doc in SAME office, were OFFENDED that I was offended, and just totally clueless and unsympathetic....I fired them...probably should have sued.....

Get yur records in yur grubbies folks...they are irreplaceable!

Best

Jon

I agree wholeheartedly! I want to add that everything original on paper belongs to the patient and everything digital on a DVD, with software, as well. I even request copies on DVD of cat scans, etc., for myself, and all my lab work each and every time. This is the business of my body and I am in the business of need to know.

Hi Bill,
Are you referring to Dr. Barbara Jahnke as the neuro closing her office?

-Gregg in Las Vegas




Bill Snyder wrote on May 18^th, 2015 at 5:01pm:

I received notice today that my neurologist is being forced to close her office. I knew this might be coming as she has been ill. I need to find a new neurologist in my area ASAP. I know awhile ago a survey was done asking us to name doctors we see and I assumed that a list was going to be made. If it was I can't find it. Does anyone know if such a list was made and if it is available? Thanks, Bill

Yes, Barb has had to close her office. Her situation is very sad as are her patients. Do you know her?

Hi Bill,
No, I do not know her and am sorry to read her office will be closing, as I know how you highly recommended her in September 2013 when I inquired with you for a recommendation.

Unfortunately, there are no other doctors near Saginaw that have been recommended by other CH sufferers from this website.  This does not mean they do not exist in the Saginaw area. This just means that you will have to research on your own for a good headache specialist and inquire with each office there familiarity with CH's, or take the drive south to Ann Arbor.

Let me know if you need recommended names of doctors in Ann Arbor or other parts of MI. Take care!

-Gregg in Las Vegas

Thanks for your response, Gregg. If I need any info I will get back to you.
As it stands now I am reasonably sure my GP's office will keep me up to date with my meds and O2 until I can connect with another neurologist. All of this is happening this week so I am just getting started finding a new doc so there isn't pressure yet; I have some slush time. (My GP has retired and is only doing consultation with a nurse practitioner so that makes this a tad bumpy too.)
I've been looking at web sites of some doctors and weeding out those that deal with hokes-pokes, mysticism, flowers, and magic to get to only those that focus on science, that will listen to me, feed my need for O2 and not play ego games.
OK, I'm done for now. Thanks again!