I went for an audiogram at the hospital today and the result was really bad. My hearing is down to the level it was back in February last year when I had my sudden hearing loss... Even when I started to have my setback in November, hearing was not as bad.. I started again in November on antivirals (been on them now since November) but things did not improve they became worse... I am just lost at understanding the whole thing... In September after 6 weeks of Valtrex, my hearing was back in the normal range... I don't understand why it went back down so much... When I asked the doctor today to switch from Valtrex to Famvir (as I heard June was successful on them) and said a categoric NO. He said he had indulged in my requests for a dex shot, antivirals, etc. for more than 6 months but that that was it. He told me that there was NOTHING more to do and that I should just ACCEPT it, which he said would make it easier for me on the long run. He said however that my hearing could get worse and that I could start with vertigo but that there was however nothing I could do... He then said that I should undergo tympanoplasty as my eardrum had not healed from the surgery.... Is that it? Should I really give up hope that my hearing can restore? Isn't it the case that success stories are rare and far between? I don't know what to think anymore....
There is no better example of professional arrogance than this. The doctor, putting it kindly, is a jerk. Gacek's paper showed how it can and should be done. So tragic. All this guy wants is his fees for doing a multi-grand surgery. --John of Ohio
Can you see another doctor? My doctor told me, though in a much kinder way, that he had nothing more to offer me.,that is when i came to this board and was fortunate enough to find what i needed. My question, vaita, is - have you experienced improvement overall? Not complete success, but improvement?
I agree with JOH and June. Don't take what your doctor says as gospel. he is a jerk, let HIM live with it and see how he likes that advice grrrrrrrrrrrrrrr
Please seek another dr. never give up My ENT said the same thing " cut salt, take diuretic and try steroids for ten days" After 10 days and no results he said just stay on the diuretics and low salt I said " is that all u got?" He said yes Thankfully my general practitioner is more helpful. Find a GP that will work with you
I'm so sorry you went through that, vaita. How horrible for him to say that to you. How ridiculous for him not to keep trying when you were better in November. September and November are not long ago at all. I hope you will find another doctor. There are many that are closed to possibilities, but there are also many who are open. You also can consider corresponding with Dr. Gacek. He has been very generous about answering people's emails.
Have you considered trying an upper cervical chiropractor, or being evaluated for TMJD? My hearing was down for over a year and working with a nucca chiro has helped.
Thank you for your messages everyone. Indeed, although he's always been nice to me, my doctor was brutal in his speech yesterday but he said that this was necessary for me to move on... The problem is that I have seen four other doctors before who all told me the same thing. I went to see this one because he is the top guy at a university hospital. He has worked with Dr Gacek in the US (I live in Europe) and is in close terms with him. He says that Dr Gacek extensively studied the vestibular function and morphology but was cautious about applying his conclusions to the hearing function. He was the only doctor so far who would listen and accepted that I try antivirals etc. He was really happy for me when my hearing went back to normal in September. However now that it has gone back down to where it was he says that this is the proof that antivirals don't work and that this disease operates without any predictable pattern. He told me that he has done studies himself ten years ago with 17 patients by injecting antivirals in their ears. He had very good results and he was so pleased. But then he did this study with a "blind" component, i.e. some of the patients received not antivirals but water in their ear but the patient nor the doctor knew about it. The test showed later on that there were equivalent results between those on antivirals and those on the water. He told me that he had been willing to help me because I had insisted so much but that from a scientific perspective there was no basis anymore to continue with the av or anything else. Also when I asked whether I should make some other changes in my lifestyle (cut salt, caffeine, etc.) he said no because that gives the illusion to the patient that he can control the disease which is not the case according to him. He said that if I go on and life my life without paying too much attention to my ear, I would be happier. However how is that possible (not to pay attention to the broken ear??) @June: yes, I felt a major improvement in September i.e. around 6 months after my sudden hearing loss - my hearing was back in the normal range but now is back to when it was in February last year @mustang: yes I have tried an upper cervical chiropractor, he said I had nothing Not sure what I should do next....Seems like I have tried everything...
If you can stay on the antivirals and see if your symptoms get better. Many people have setbacks while on antivirals but if there is a track record of improvement that is a good sign.
Thanks for taking the time to read and for your messages. @Vicky I am taking 2 g of Valtrex a day at the moment.I am about to start allergy shots.fingers crossed that it will help.... @justrose thank you for your testimonial. It helps having some perspective on this disease.I am living it as a drama right now because I am still fairly new to it and having a hard time to adjust. Sure there are worse things than meniere but I find it though to loose hearing at a young age (or at any age!) and feel less equipped and more fragile now to deal with life's many other challenges. But hopefully I will also take some perspective with time...
were you on 3 grams? that's the starting dose, then after 3 weeks or so we are supposed to lower to 2 grams and if symptoms come back to go back up to 3 grams until you can go to 2 grams w/o symptoms returning
Vaita, I have only been on AVs since the summer and valacyclovir since September. Every time I have gone to 2 gms/day I have had a recurrence of symptoms within a few weeks. I recently had a correspondence with Dr. Gacek, and he said that perhaps I won't be able to go down to 2gms/day or maybe I need to approach it more slowly and that next time I go down I should try 2.5 gms/day. So perhaps you are on too low a dose. I originally got in touch with Dr. Gacek because vertigo is not the primary symptoms of my MM. (My vertigo was resolved by addressing MAV and with the Epley maneuver.) I have only emailed with him, but he was supportive of my addressing the hearing loss with the anti-viral therapy. This seems so different from what your doctor is saying. My hearing tests were only getting worse each time until I started the AVs and then I had a big improvement. I've had ups and downs since then, but I have not gone back to my worst. For the potential benefits of the AVs v. the very minimal risk of them, it doesn't really make sense to me for you to give up yet. It sounds like it doesn't make sense to you. It also sounds like this doctor is not on the same page as you right now, even if he was before. If I understand correctly the other four doctors you saw were all before the hearing improvement in September. Now that you have that, some other doctors might be more convinced. It is a very frustrating process for sure, but one thing I have learned from this process is that you really have to be your own advocate. One other idea I have is that you might say to your current doctor it will be easier for you to have peace of mind of you can try something (and be specific) first--maybe 2 months on 3 grams/day.
I could be wrong but I am not sure that the primary studies for valtrex with Meniere's have been focused on the hearing (or even the fullness aspect) but more with the attempt to control vertigo. When I started the anti viral and had not gotten any significant improvement in hearing (but fullness was down and no vertigo attack after 2 months) he said that he didn't expect to see significant improvement due to the time since I first started having attacks. He asked about the vertigo. That said, I know just how frustrating it is to have the hearing impacted - but fortunately a hearing aid can help address that piece. Vertigo however is the aspect that is a true danger so if the a/v is working for you to control that piece definitely be thankful. I am so sorry that your doctor was that blunt. I have had 2 out of 3 doctors tell me that there is nothing else that they could do for me. One very blunt; one much more kind about it..but same basic answer. I also had a good friend early on that truly thought that the doctors I was seeing just were not any good; so she knew a chief OTO at some hospital that was a friend of hers and talked to him. He basically told her that as a doctor he found Meniere's to be one of the more frustrating things to deal with as there not alot of non-invasive surgical solutions that are "sure" to work. Obviously it was not what I wanted to hear! Here is what I know for me. When I got to the point that i realized that I couldn't control this thing and started focusing on the positives of each day/moment, things were easier to deal with. Know that I am not taking your doctor's side! I think that every doctor needs to have compassion and figure out how each person needs to hear information and how best to share in a productive manner. Good luck
One of the first double blind placebo controlled studies showed promise for hearing. In my case my hearing was restored and there have been many others where antivirals were effective for hearing. They seem to be particularly effective in correcting distortion which can be a terrible problem not correctable with hearing aides. The antivirals work for whatever part of the inner ear is assaulted by the virus. In some people it is hearing, in others it is vertigo or other balance issues, in some it is both. How effective it is with hearing sometimes depends on how long the hearing loss has been there. In my case it was nine months before i tried antivirals and my hearing has returned to normal for more than 5 years. A few with very long hearing losses have had success but it is more rare.