Best/Most Advanced Docs For MAV

Physicians, Specialists, Clinics & Visits 👨‍⚕️👩‍⚕️
1

With Meniere’s, there’s a short list of docs in the U.S. who are considered the best. You generally get this information from fellow patients, or just digging in and doing extra research.

With MAV, this appears to be more elusive. Outside of docs that have been mentioned on this board, does anyone have a short list of docs who are considered among the best with this type of ailment? The doc I currently see, Dr. Hain, is usually on just about everyone’s list relative to anything about dizziness.

Any other docs out there who seem especially good with MAV?

Thanks in advance for your reply.

2

When I spoke to the people at Hopkins, they said John Carey was the one to see for MAV.

There’s a guy Adam likes a lot, i can’t think of his name, but he has the website with videos where he talks about MAV. I think he also visits this website occasionally.

3

Dr Robert Baloh at UCLA is probably the leader in this field. He is researching the genetic cause of migraine/vertigo syndromes. He also literally wrote the book:

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Disorders of the Vestibular System

on vestibular disorders with another leader in this field - Dr GM Halmagyi in Sydney, Australia. He is clearly not just migraine-focussed given his long history in the field of vestibular disorders, but does says that the vast majority of patients that walk in his door thinking they have a vestibular disorder have migraine.

Other excellents ones are:
Dr Hain in Chicago
Dr Rauch (not sure where he is located)
The neuros at John Hopkins (where I believe one of the fellows who wrote Heal Your Headache practices).

There are also others I would have missed (e.g. in the UK and other countries).

4

The vestibular disorders association publishes a list of references on their website, by state. In the past it was more inclusive, but last year they limited it to dues paying members, which really shortened the list.
vestibular.org/index.php

Dr. Rauch is at Mass Eye and Ear.
I once met Larry Newman, who is at the Headache Institute at St. Lukes-Roosevelt, NYC, and he told me that he was studying MAV.
A good headache doctor in Chicago–per his website–but doesn’t seem to deal with MAV, is Larry Robbins @
headachedrugs.com

Personally, I see someone who is highly regarded, yet have recently become frustrated. So, I turned to my local ENT, armed with articles. It’s very scary to have problems, and feel frustrated with your care, or as though you are managing yourself.

Kira

5

Thanks for the responses.

Dr. Hain is my current doctor, and he is indeed very advanced compared to most docs out there. Based on where I was before I started seeing him, and where I am now, I definitely improved. I can measure that based on my ability to do certain things I could not before…like…work full-time…and some other things as well. I still have a long, long way to go to be completely satisfied with my progress, but it’s more progress than before.

Having said that, one of the things I’ve always been intrigued about regarding “good” or “bad” doctors is the issue of hard, concrete, measurable, real results. That is, do people consider certain doctors to be better just because the doc was professional in his or her appearance, very knowledgeable, were amiable and empathetic, they might have a lot of publications to their name, and other doctors think they’re good, too?

What about quantitative results? How many patients have gone into remission, or were perhaps cured…never felt a symptom again? That’s one of the things I’d like to see more of in the community. MAV and Meniere’s are really, really tricky and complex. One doc might be a jerk, but all of his or her patients might actually improve more than other docs who are more popular because other people just say they’re good. Maybe we just don’t hear about it much because the patient didn’t like the doc.

Several weeks ago, I saw a note from someone in a mass e-mail saying that their doc actually fired them because they didn’t have the discipline to stick with the prescribed treatment program after several months. The person was furious…but in my opinion…the doc was probably right. The patient was wasting their own time and money, and wasting the doc’s time and money as well.

I’d like to hear some thoughts on this. Critically and analytically speaking—cold, hard facts—who are the docs who get the best results? That’s one of the things I’ve always had a healthy skepticism about. A person down the street says: “This doctor is really good?” What exactly does that mean?

As the great Nobel Prize winning physicist Richard Feynman once said: “It doesn’t matter how beautiful your theory is, it doesn’t matter how smart you are. If it doesn’t agree with experiment, it’s wrong.”

6

Fascinating question, but probably impossible to answer, unless you poll patients and follow them for long periods of time. Because we’re dealing with chronic conditions that are subject to relapses and remissions, often the treatment succeeds, yet it was not the cause of the improvement–the disease process was. Whomever was the treating physician at the time may get the credit.

Recently, with my flare, I was in contact with three highly regarded regional experts, and each had a different opinion about how to treat, and in my case–since I"m going to try zoloft, whether it was a useful drug, how to titrate it and what dose to aim for. There was no agreement.

Also, in chronic diseases, where relapses occur, patients get frustrated and drift away–are they successes or have just given up?

It’s a wonderful question, but I don’t think it can be answered. Personally, I see a highly regarded physician in the field, and am currently frustrated with that person, so armed with articles, I approached my local ENT to manage me–and I did email the experts for some advice. My local ENT will never appear on a list of national experts, yet his willingness to help me and utilize the experience of others make me consider him a good physician.

Insurance companies are trying to institute “pay for performance”, and no one can agree on the data that should be used to quantify performance.
Great question, but I don’t think we’ll ever be able to answer it with evidence.
When my daughter was very ill with MAV, the local “best” pediatric neurologist didn’t recognize or understand it–so I took her to the “best” neurologist for migraine in Boston, and she was clueless as well.
When our state publishes the best doctor surveys, they surveyed physicians, who returned the surveys at less than 10%, so they turned to nurses. Are the results valid? I don’t think so.
Kira

7

Excellent question. A couple of stories regarding this:

I wondered the same thing when my doc claimed that he “cured” 500 people of MAV with Zoloft. I wondered “what does he mean by cure?” Does that mean he never saw them again, etc, etc. I thought it was a bold statement to make about what I have come to believe is a chronic condition.

I live in Princeton, NJ. Lots of docs want to have a Princeton address so we’re loaded. It’s a small town - everybody knows everybody. So when I ask a doc I happen to know for a good referral, I always get the name of his best buddy. it ends up being he likes, not who is the best. So I end up searching their CV’s, see who has had the best training and go from there. I just this past week asked a university doctor for the name of a good cardiologist for my husband - i was drawn toward the name he gave me who he described as not liking as a person, but liking very much as a doctor.

Years ago, when looking for a PCP for my husband, I asked around (I run a business and doctors are my clients). I sent him to the guy who was thought of unanimously as being the best - “and you can use my name if you can’t get an appointment.” We could not be more disappointed in his treatment. I searched for his CV - his training is embarassing and his practice bears it out. He’s a great guy, spends lots of time with his patients, does many things to make them feel comfortable, like having snacks for them after blood work, is personally available by phone and by email and has a TON of patients. He even ran down, and back up, three flights of stairs, alongside my husband, to determine his recovery after exercise. But his treatment and prescribing have been appaulingly substandard.

My exhusband, who i have nothing nice to say about except for this - he’s a great doctor. If I were critically ill, I would want him treating me. He had excellent training and he did excellent work. I know this because i witnessed, indirectly, his approach and his results alongside the results of his colleagues (university).

Take that for what it’s worth. I think Kira is right. When I was first researching this dizziness business, one of the things that stood out was how often it was mentioned how difficult the etiology was to diagnose and how difficult it was to treat. I knew then I was in for a difficult ride.

Julie