Finding a Neurotologist

I started with a neurotologist near me, and after more than a decade switched to one in a city 75 miles away. It was because of a combination of factors. My doctor had given good care for many years, but last year when I declined into bad (desperate) shape and was considering destructive treatment it was getting more difficult to communicate with her in a way that was helpful. Then the clinic mishandled an unfortunate incident with testing (punctured eardrum), and I was shaken. Finally, as I looked into it, my neurotologist's specialty was cancer, and I couldn't find evidence of her experience with gentamicin or labyrinthectomy. She bristled and deflected when I asked her about it. Switching doctors made transportation logistics more difficult, but it was important to have confidence, and I'm glad I did. That said, I'm also glad for the many years of good care I got from the original doctor who I could get to easily without having to drive.

 

Jenna,

If you are in Ga. I would recommend Dr.Douglass Mattox at Emory University ...I always recommend a large teaching hospital because they know the latest studies and have all the resources available. Such as testing and balance therapy ect.....

There are 5 or 6 of us on this board that see Dr. Mattox and many of us have had Labyd and killed the beast forever.

Dr. Mattox would be my choice in Ga.

 

Just out of curiosity guys how many of you see Dr. John Mcleveen Jr in Raleigh N.C? that's who I've been seeing for about seven years and who did my vns in 2015. Since I've become bilateral my ent here at home, not being happy with the treatment from mcleveen of 10 mg Prednisone once a week is referring me to another otologist in Raleigh by the name of Dr Calhoun Cunningham to see if he can treat me more aggressive to try to save the hearing. I personally think I'm wasting my time and money going to this other doc. Has any of you seen these docs for meniers? Also how many of you are still taking Diuretics. I justed stopped mine because I'm tired of that medicine and I think it is more speculation in the medical community then help. So thanks guys. Oh by the way I'm at home getting over the flu.......bad stuff

 

Jennalu I agree. I was drinking more than a gallon of water.

 

Its very important you find a neurotologist that is willing to work with you. You want them to listen to your ideas and tailor a game plan for you and your symptoms. There is no cure for MM so his/her guess is as good as yours.

if you had a bad back...would you go see a back surgeon first? Probably not. Well...if you have MM that is basically what we are forced to do. The only doctors with any experience in MM are surgeons. They are not trained in trying to figure out what is causing your symptoms. That is up to you. There is tons of research on these forums. Take some time and do as much research here as you can. Hopefully you will find some relief.

Good luck!

 

As to drinking + diuretic (Jenna's point) I may offer an explanation. The goal is eliminating sodium from your body (not water, that's a consequence of the former). One approach is reducing intake, the other is increasing elimination. The two main routes of elimination are urination and sweat. The body adapts to reduced intake by reducing elimination both ways. A class of diuretics acts by promoting salt elimination as does increased water intake. One big difference is that while salt control in diet alone is not known to cause acute lack of sodium (hyponatremia), salt-depleting diuretics and excessive drinking (aka water poisoning) can and it's a dangerous, poorly diagnosed and occasionally fatal condition. Since my diet compliance is high (e.g. I make my own sodium-free bread, eating out once per month) and I am fairly active (sweat) my doctor and I decided to start with diet only -- no medication, no increased water intake. It's all about compliance: if you can reduce your intake to whatever level you want, there is no need for diuretics. I observed two things: initially, my hearing responded very well to the diet, and poorly to any breach in compliance (aka eating out). I learned how to self test my hearing daily, so this is more than subjective, but it's just one case, may or may not generalize to anyone else. As the disease evolved over the years, hearing loss became permanent and insensitive to diet. But I am still on the diet hoping to stem further loss or loss in the other ear. As far as the vertigo, I can't say it worked or not because my attacks have been sporadic and tapered out quickly. When I started the diet, cold turkey, I think I had some mild dehydration symptoms. I added one glass of water in the morning and it seems to have worked. Other than that, I listen to my thirst.

The idea is that you want to lower the sodium in your body, not blast it out of existence. Nobody really knows what the minimum safe intake is, there are only conjectures (200mg, 500mg). I would suggest trying the diet first and adding say a quart a day, and give your body some time to adjust before going to the next level. But if you have to eat out, hate cooking etc., then maybe your doctor is right in going to the big guns right away. I listen carefully to my doctor, but make my decisions. Over the years I found most doctors discount the possibility of lifestyle changes, a bias promoted by pharmaceutical companies with billions spent in marketing to doctors and patients and in biased research. It's us patients who have to push back against it, as the politicians prefer to rake in the money in political contributions. But then you have to implement those lifestyle changes.

 

All interesting and as I now am becoming bilateral with menieres. I do see a doctor in NYC Dr. Anil Lalwanu. He specializes in Neurotology, Otolaryngology. He's very a matter a fact, says not much to do for this until it worsens have 3 or more episodes of vertigo a month then he would consider other options. In the meantime I am suffering for the past month, becoming depressed because at times I can't hear at all. A local ent on long island suggested a hearing aid for my right ear and that can help tune down the ringing. Currently when it's bad in my left, I hear better in my right. I'm frustrated and dont know what to do.
I started to strictly follow a low sodium diet
Take the diuretic everyday since November 20th.
And I ordered the Vitamin B6 and B5.
So my question is does anyone have a doctor in NY that has helped them?

 

I live in NJ and go to Dr Sujana Chandrasekhar. I believe she is now with ENT Allergy and Associates . She is a Neurotologist. I found her to be very nice and she will work with you . I have not seen her in a couple of years as I am atypical and am not having any symptoms. I do take Valtrex ( though she did not prescribe it she was ok with me taking it). I have also heard good things about a Dr Downey in northern NJ she prescribes antivirals. Good Luck do not give up!!!

 

Thanks for the information, every little bit helps. I was in remission for 9 years and ever since then it has gotten worse. Good luck to you.

 

Hi again JKC
How long have you been using Valtrex? And how long until you notice a change?

 

I have been on now for 5 years scared to stop don't want to bring on any symptoms. I never had vertigo just off balance I started Valtrex as a preventative to stop the Atypical Menieres form becoming full blown Menieres.

 

If you don't mind can I ask, are you maintaining a low sodium diet? No caffeine, no alcohol as they are saying are triggers for this.

 

I used to strictly follow low salt . I try to now but it does not seem to affect me one way or another . I never had caffeine even before this and drink socially couple beers a month. The biggest thing that contributed to my symptoms was the anxiety of when the Menieres would become full blown. thankfully that has not happened yet.