I have been waiting since September. I finally get to see my new neurotologist next week on Wednesday. I can't wait. I keep going back and forth between feeling hopeful and doubtful that he will be able to help me. Anyway, I have heard he is one of the best in the Midwest so we will see. My previous neurotologist believed in diuretics and if that didn't work then injections and surgery when it got really bad. I plan on asking about MAV and also antivirals after he hears my history and I hear what he has to say. I am also very curious to have my hearing tested again. It has been 2 and a half years since it was tested. I had my hearing tested 3 times in the first year and a half that I was having symptoms and it stayed stable, with just a mild hearing loss in the low range.
Good wishes! I hope it goes well. If you haven't thought of it yet, you might bring a copy of Dr. Gacek's article: http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf
Good luck, Redbird, I hope things go well and the doc gets you on a good path. I am interested to hear what he/she has to say about MAV since our symptoms in the past have been somewhat similar, re: hormones. I see my neuroto every 3-4 months and get hearing tested every visit... it's been mostly stable for the last year or so after taking a somewhat steep dive prior. He thinks I walk the line between MM and MAV.
Thank you, PleaseNoDizzy. I will definitely be back on here after my appointment to report how it went. I always ended up leaving my appointments with my previous doctor feeling discouraged, I really hope I leave my appointment with this new doctor feeling hopeful.
Sure will be interested in what he has to say. I know we talked here once before and I mentioned I had seen this doctor a few years ago. And didn't have Meniere's then--just BPV and got ok with doing head exercises he recommended. He's highly respected in our area. I have considered seeing him and getting a 2nd opinion. May do that, depending on what you think and how things go with his addressing your issues. There are a few only in this area and I see a very highly respected doctor too--so please share with us how your visit goes. Best of luck!
Thanks Danni. As expected, I lost a little more of my hearing. I had a hard time during the speech recognition portion of my hearing test. The doctor was nice. He seemed to take more time with me than my previous doctor would. He spent a lot of time explaining what he was doing because he had a resident physician following him today. He said I definitely have Meniere's. He kept calling my symptoms "classic". But he said he believes I also have MAV. I have to get an MRI in 2 weeks. I had a CT scan a few years ago when my symptoms all started but he said a CT scan isn't enough. An MRI would be better. He believes my Bell's palsy could be related. He gave me a diuretic and said to start on magnesium and B2 supplements. I asked him about antivirals. He said he has read Dr. Gacek's study (mentioned it on his own after I asked about antivirals) and talked a bit about that, but he said that it was not proven very effective. I mentioned the fact again that I had Bell's palsy twice and he said a virus certainly could cause Meniere's but not usually. He didn't completely dismiss it, pretty much said that it could be a possible treatment for me but to start with diuretics and wait for the MRI results. He also talked of possible steroid injections if things were getting bad. Overall I am not feeling super hopeful at the moment. He did seem at least like he might be willing to let me try different things. I'm just a little overwhelmed. Didn't go exactly as I was hoping.
At least he was 'open' it sounds like to anti-virals. Mine was a complete--'no' because blind studies didn't show they helped. I am interested in how Magnesium helps? Did he indicate what it is supposed to do in the treatment of Meniere's? How long did he spend with you? I had bad shingles on my face (really bad ), about 2 years prior to developing Meniere's symptoms. It is caused by the chicken pox virus as you know. I even asked my Ent about that--if it could have caused the Meniere's? He said it's 'not caused by a virus. Sounds like your doctor is 'leaving the door open' anyway. Are you going to have to get hearing aids or do you know that yet? Thanks for the update. What is it that caused you to 'not be so thrilled' with your visit? I am seriously considering seeing him--but will wait until you post more of your results. Do hope you get really good answers and help.
Yanksgirl, I think I was just expecting to get antivirals at my first office visit so I left feeling a little disappointed for that. But overall, he was very nice and informative. He took a lot of time with me. I would definitely recommend him for that. I am also happy that he did leave he door open. I am hoping after I get my MRI and tell him the diuretics don't help (if they don't help, that is) that he will let me try antivirals before I would consider steroid injections. The magnesium he wants me to take is for the MAV.
That's interesting about the magnesium for MAV. Do you get the 'regular migraines' or just in connection with the Meniere's? I had migraines for years when I was young--like you. But they just faded away as I got older. Now in my upper 70's. I get what is called 'silent migraines' (by a neurologist). Since I have all the symptoms of migraine, but without the pain. I am glad I don't get the pain--but believe me, this is pretty intense too! No vertigo either--but the vertigo stopped when I had the 'endolymphatic shunt' operation 5 years ago'. However, I have, what I mentioned above, bad 'head pressure' daily, that makes me feel almost like I'll 'faint'--though I never have. And feel off balance when it's really bad. Can't turn quickly--stores are a real problem to shop in. So, I only grocery shop--rarely go 'shopping' in department stores--really miss that. Being in restaurants, loud places--even church, can make it worse. I haven't had steroid injections--ever. My doctor hasn't recommended them--and he's the specialist. Seems doctors differ on the benefit. My hearing has gotten increasingly worse and I may have to invest in brand new 'really expensive' hearing aids. Just got one 6 mos. ago and it helps, but the other ear is bad and this one doesn't help much--so am having another test in March--then will decide if I want to invest in the more 'up to date' aids. In the meantime, nothing has helped my head pressure. It is most days on a scale of between 5 and 9. I get a break every now and then, and it's a 4. The only thing that helps--is lying down awhile and/or sitting in a recliner--and then when I'm upright--it's back. Alot of brain fog too. That's when you can't 'multi-task' well and things are hard to 'focus' on--more than one thing at a time.I don't stop doing things--just don't (can't) enjoy it like I once did! You can read about 'brain fog' here too. Good luck and please do stay with us and let us know how thing are. We all help and support each other.
I guess the part I struggle to understand...dieuretics may/may not work but the new doctor jumps to have you try them. You talk about anti-virals (and with your bells palsy is it already at least a potential "family" of issues) and that is a wait it is not effective. For many (like me) dieurtics didn't help at all; but anti virals did. It would be "nice" if they would at least let you try them to see if they would work for you. They could monitor your blood work to keep it safe. But really, I would think that diertics potentially could cause more issues (if your potassium were to go too low, blood pressure drop, etc.) than you would ever have issues with anti-virals. I wonder if it is worth the call back to his office to politely ask to try the dosage while you are exploring the MRI. (For what it's worth...I can't even have a MRI ever so that is not even an option for me no matter how much the test could show.)
June if i could have a MRI I would. Based on the type of product used when my implant was done it does not allow for MRI at any setting.
That is too bad. Can you go through metal detectors? I was worried about that but i do not set them off.