Labyrinthectomy surgery

Dhors,

Scott's just really protective of fellow sufferers.

Anyway, the important thing is you spoke up. Thank god you did.

The advice here is solid, and yes, unsentimental at times. All I know is you aren't having a premature labyrinthectomy.

 

Maybe i misunderstood you, but it sounds like you're saying he was ready to do a laby without checking to see if you're bilateral (until you spoke up). No?

 

Yes, thank you.

 

I didn’t have any left in the ear worth preserving. I didn’t notice any difference, for example, after I had the labyrinthectomy.

 

We're all just here to help each other. I hope you find relief soon!

 

Whoa. Pretty incredible story. Yes you need to know the offending ear before you kill it off. I was thinking you knew that ref my previous comment. I am status post laby L ear....was the only ear involved at the time. After the laby....about 5 years....the other ear kicked in with symptoms. A good dizzy balance doc can often discern which ear if the bad guy. But you are right that it could be either ear if testing and symptoms are the same or similar. Bulldogs recommendation on Emory (Dr Mattox) are spot on. But sounds like you are under good care. A good second opinion spot if you are interested in one....is Dr Hain in Chicago. I really like him and have seen him in clinic many times as my second opinion doc. He is a non surgical practice so there is no motive to push anyone in that direction. So he helped me a lot. He is also open to a broad array of treatments like anitvirals, and immune suppressant therapies. I am now on Humira since thanks to him we discovered autoimmune issues. But too late for my ears....they are toast. Like Scott Tom said....all just trying to help. Good luck man. Holler back if you need more dialog.

 

That can be good or bad. Motive is a difficult thing to decipher. I've found his writings to be, at times, unfairly derisive of treatments other than his speciality, gentamicin injections.

 

Dr. Hain keeps coming up on this forum. My understanding is he is in Chicago.

Is their anyone as qualified in MM treatments as Dr Hain in NYC? I really have not heard of anyone worth seeing in NYC. All the docs I have met with were surgeons who thumbed their noses at anti-virals and any alternatives.

If anyone has a forward thinking Doc in NYC feel free to pass along. Thanks!!

 

Dr. Sujana Chandrasekhar 212-249-3232

 

Thanks JKC.

I have been to see Dr. C - she is very nice.

However she would not give me a full dose of antivirals and would only do a labby with a CI. Which is strange because I have one ear that works. Seems like a way to make more money for the surgeon. In any case...she is very sweet and extremely personable. She has the best bed side manor of any of the docs Ive seen in NYC. Most are not very good.

 

I'm surprised she would not prescribe Anti virals . I get mine thru my primary but on my last visit she said she would refill them if I wanted. Dr. Downey an ENT in Hackensack NJ prescribes AV's.

 

No she would...but only 2 Famvirs...I really think you need to start with 3.

I give her credit...several surgeons have laughed at me when I asked to get anti-virals. So its cool she would at least do 2.

I got Dr Ort in Edison to give me 3 Valtrex

she is very cool though... I really like her....she knows all the research.

 

A couple of things.

1) It often takes a LOT longer than 10 days to see results. Some folks here have reported being on the max dose for 3-6 months before finding relief. Even the normal cases take 3 weeks on the max dose.

2) Taking Valium daily is a huge mistake for anyone. Not to mention taking Klonopin as well. They are both benzodiazapines, and extremely addictive. They also build tolerance very quickly, which means you have to take more and more and get less of an effect. In the end, you wind up with an addiction and no relief. Also, they can cause tinnitus, hyperacusis and other hearing problems. If you don't believe this, then visit the http://www.benzobuddies.org/forum/index.php site to get more info.

 

In Feb 2018 I will be on antivirals for 1 year. I think you must stay on the full dose for at least 3-6 months. The drug is very harmless and you should do a blood test every 3 to 6 months to make sure everything is working well while on the antivirals

 

My PHCP is very liberal with whatever meds I've asked for in the last decade. But he won't give me valium. He has a no valium policy. I've found the dude to have good judgement and he's always well informed. He'll give me Xanax. I haven't felt any negatives with Xanax. No withdrawals whenever I stop taking it. At least none that I notice. Though, I've never been on it consistently really.

 

That's the key. Daily use is terrible. Occasional use is fine.

 

Thinking about you Dhors.