My conversation with Dr. Gacek

Thank you Vicki!

Colin (and Vicki and June–), I do share your frustration and anger. If I had only listened to my neurotologist in New York City and not had access to any other information, I would have thought that all he really could do for me were give me a pitying look and confirm I will eventually be deaf. Seriously.

For now I am trying to figure out how I can move forward. As I have mentioned, we have recently moved to a new country and I did find an English-speaking ENT. I do speak the language here, but given all the nuances of the experience and the specialized vocabulary involved it is basically a necessity to have an English-speaking doctor. And I am sure there are any number of others here who speak English, but it feels rather futile to keep trying new ones only to hope that they will subscribe to this line of thinking. I highly doubt Dr. Gacek really wants physicians from all over the world calling him to have him explain or defend his approach to treating MM. Any ideas for how to proceed?? Right now I feel like my best option is to try to persuade this ENT to let me try an antiviral. I normally prefer to medicate less whenever possible, but at this point I feel like it would be silly to take this option off the table, especially when loss of hearing involved!

 

Well you are set now. I was noticing your comment about the gov shd be interested but that would be more a function of the insurance companies here. I agree, what a huge money saver if antivirals were a first resort for menieres symptoms.

 

Hi June,

My thought was that the government would be interested in pushing the cheaper anti-viral approach in the United States for three reasons:

1. This is a disease that affects an older population predominantly. When you turn 65 in the United States the government picks up the majority of the tab under the Medicare program.
2. This is a disease that ruins lives - many people cannot work and presumably end up on welfare / medicaid - again the government picks up the tab.
3. I have seen posts here about applying for disability - again, that's a government program. Anti-viral therapy may eliminate the need for disability in many cases.

We need to find a way to get more exposure for this disease and the promise of anti-viral therapy. Any thoughts?

Kind Regards,

Colin

 

Hi Elisabeth,

My heart goes out to you. As I said in a previous post, I feel very fortunate to have ready access to a doctor that I don't have to convince about anti-virals. If the medical system in your new home allows for it, keep shopping for ENTs and GPs until one of them listens and prescribes the anti-virals. Barring that, is a trip back to the United States a possibility for you? Could you visit one of the clinics where anti-viral therapy is accepted?

Kind Regards,

Colin

 

That is not a function the government gets involved in, in the US. The insurance companies and other associations might but professional organizations would have to accept it as a best practice first. I think the best bet would be to get the drug companies who make the stuff interested. I think it is already off patent so i dont know how much they have to gain.

 

It is interestint because the ENT I was seeing (prior to sending me to the neurotologyst for the shot to the ear told me that Meniere's and cochlear hydrops and sensorineural hearing loss could all be viral based. Still she didn't offer anti virals. Only prednisone. Isnt that odd? Perhaps she might be willing to prescribe them though. I need to wait til Jan now before I can go back due to crazy insurance changes. So will do JOH in the meantime.

I doubt the gov't would get involved in advocating treatments for diseases until the full medical community embraces it.

 

^^ yes it is odd.

For some reason, it seems the family drs are more willing to rx the antivirals than the specialists. At least in my case. Maybe it is because they use antivirals somewhat routinely for other things and arent afraid of them. Perhaps it is because they aren't 'educated' enough to know there is a controversy. Perhaps it is because they are not surgeons as are most ent's. Who knows.

I say work with whatever drwill work with you.

 

Not to confuse the issue, but when I first got dizzy 10 years ago, Dr. Herb Silverstein in Sarasota suspected a viral causality and put me on Valtrex. I was on it for nearly a year, with no results.

He finally took me off of it and treated it like hydrops--diuretic and Allegra, low sodium.

I still have severe dizziness and am going back next week for more invasive treatment--probably the Micro Wick in the ear with steroids for the inflammation.

I hate this evil disease. It has robbed me (a a lot of you) of a big chunk of my life.

Bless all,
Ron

 

Hi rondrums,

I wish you the best with your upcoming treatment. I hope you get great results.
Unfortunately it appears AVs do not help everyone but I am curious what dosage were you taking back then?

 

My thanks as well.

 

I am pretty green at posting so bear with me...I really enjoy reading everyone's posts...I am . Learning more and more about this disease. Started JOH 2 weeks ago...not on all yet trying a few at a time to see how I cope, but feel the lysine and the flavonoids are starting to help. Thank you so much for saying progress is in a zigzag and not a straight line! That makes so much sense as I will have some good days then whamoo dizzy again or the crickets in my ear are singing super loud..I have an appt in a few days with my family doctor and I am going to bring up the antiviral. Any tips for approaching my Dr.? Thanks to all for the great tips.

 

Best I can recall, it was 1 gram 3X a day for a few weeks, then reducing to 2X a day for a few weeks, then down to 1X a day.

Bless all,
Ron

 

Very good report. I agree with the findings. Thanks for sharing.

 

Is the one in Alabama an Ent too? Sure wish I'd get an answer from the one in Mass. to recommend a doctor in the St. Louis area who will try the anti-viral treatment. I've emailed his office but as yet, no response.

 

Did you try resending it? I once emailed him on Friday and I don't think he ever saw it so I emailed that one again and received an answer.

 

This guys is basically the same stuff that the younger Gacek told me about the disease...Also took his time to chat with me and answered my questions on a level that no other doctor has ever bothered to. I don't care if you have to drive 1000 miles to see this doctor, or obviously his dad, it's worth the trip...

My honest opinion on why most doctors don't want to prescribe antivirals? It hurts their pocketbook...Dr. Gacek basically told me that he only did about 20% of the surgeries other doctors do because so many benefit from the antiviral treatment. Because he's a good man this is how he rolls. He's a true doctor that does what he does to HELP people...not to make his pocketbook fatter. I told him that I would recommend him to ANYONE that has this problem, so I said that it would come back to him....He agreed and said that his father told him that same thing...and that he feels good knowing that he does the best for his patients because he is a man that honestly gives a rats a$$ about his patients...Many do not care as much as they do about scoring big dollars...that's a fact jack!

 

I did resend it yesterday--so far, no answer!

 

I emailed him 3 weeks ago no reply. I am sure he is very busy. I will be in Boston in April may try to see him

 

No chance of my going there but sure would hope for a reply soon. He has to be a very busy man I know. Let us know if you see him.

 

i took antivirals for about a year and saw little to no relief. i was taking 800 mg 3 and 4 times a day. Glad to see some getting sustained relief from them.