After my local ENT has given up on me, I'm seeing a neurotologist (2 hours away) for the first time on Wednesday. I know there was a similar thread before the crash...but it's gone, so... What are things that I should make sure to ask? I don't have vertigo (yet)...but do have intense tinnitus, intense pressure and hearing loss. Thanks for any advice.
Make a list of your symptoms and history and make sure they listen to you. Be assertive. Take a support person if you need to. Sometimes I need to take my husband to stand there in the doctor's office with his testicles and say "My wife is not a crackpot. She is seriously ill and you people need to stop blowing her off. Please get us some help." (I can do this myself but I am five feet tall and they tend to think I am doing a donald duck tantrum and just ignore me. I need a LARGE, deep-voiced, standing male person to back me up--sometimes those guys come in so darn handy!)
I agree with Thornapple.. Making a list ahead of times helps me.. at least to remember what I need or want to ask... I brain fart when I get into the offices and forget what I want to ask.... Hope all goes well for you...
Provide as much info as you can.....when your symptoms started, what the symptoms are, when they occur, eating habits, sleeping habits, etc. And especially what Thornapple said!!
Hi Abra, I can't really help much with advice on this one - I'm on a few two year waiting lists to see a neurotologist (I think I need to head to the States!)....but I can at least wish you good luck. I hope it all goes well and the doc comes up with some real help for you. Please let us know how it goes, Amethyst
Hi Abra- If I remember right, you're in the same area that I am. Are you perchance going to a neurotologist in OKC? It is important to bring someone with you to the appt if you can. Trust me, two memories are definitely better than one. And you both can ask questions and also get answers. They will do a hearing test there- just a given. And you will get the typical questions. The best thing to do is to write down before you go-- What symptoms you are having, frequency of the symptoms and endurance of the symptoms. Bring the records from your current ENT's office (that way the neurotologist has the records of whatever tests you have already had done-- no need for repeats). Then most importantly-- write down any questions you may have so that you don't forget to ask them. I can't say the neurotologist has been "my saving grace"- but he was definitely good and I had no questions that he was not "foreign" to Menieres. I knew that by going to him- I was giving it my best effort to get treated by the best. There are no clear cut perfect answers for Menieres- since no two Menierians are alike (which makes it not only frustrating for us- but for the doctors too). Also- please do not immediately say "yes" if surgery is recommended...... give it time, research and think about it thorougly......because many doctors are very quick to recommend surgeries. Best wishes and keep us updated! Dianna
I did send my records over (yes, Dianna, to OKC) a few days ago so that he could review them ahead of time. I will be taking copies of most of them with me as well, just in case he didn't get to look at the packet. I've written down a chronological list of what happened, my current symptoms, my current meds, and a list of questions I want to ask. I have a 10 page, 2-month long journal that covers what I ate, how I felt, what the barometric pressure was on bad days, what meds I took when...not sure if I should take that with me or if he'd even bother to look at it. It's not really arranged for anyone else but me to read...but I can see no patterns in it. My husband will be going with me. Any other suggestions? Amethyst, if you aren't too far from the border, it might actually be a good idea to get an appt with a doctor in the states. It might cost you more, but if you can get in in a month or 3 instead of a year, it would be worth it.
Hi Abra, Funny that you say that - going to the States for a consultation was actually just recommended to me by an employment lawyer less than 5mins ago. I think you're right - it might be a very good idea. If you wouldn't mind, can you or anyone else please give me a rough estimate of the costs involved? Including testing - just a ballpark number would be great so that I can figure out if this is a viable option. Thanks very much. Amethyst ...by the way, I would bring your journal with you. At least then you'll be prepared if there are any pertinent questions and if not, nothing lost by bringing it.
Amethyst, My first visit with the first ENT, who did a hearing test and brief exam, cost $140. The identical visit with the second ENT, although the discussion with the doctor went a little longer, cost $392. (Thank heavens for insurance.) These were not neurotologists, just ENTs. Don't know how much more a neurotologist would charge. I haven't had any vestibular tests. Have had food allergy and MRI, but you've probably already had that?
Amethyst, I travelled from Toronto to Los Angeles to see Dr. Brackmann at the House Ear Clinic. He saw me before the tests and after the tests (the next day). I have an audiogram, a CISS MRI, and a stacked ABR test. All together the cost was just over $1,000 USD. Not much at all considering that the wait to see the neurotologist in Toronto was over 6 months.
Thanks so much for the information Nassman. You're right, $1000 doesn't seem like much compared to the long waiting lists here in Canada - I'm expected to wait 1 year to see anyone at Sunnybrook and 1-2 years for London, Ottawa and Montreal. Great to know that going to the States is an option. One more question if you don't mind.....I would imagine you researched a number of clinics prior to heading to the States. Is the House Ear Clinic in CA the best place to head to in your opinion? I've been considering just driving down to Boston but if I'm going to make the commitment then I want to find the best neurotologist I can. Any advice? Thanks again, Amethyst
No problem Amethyst. I did do a lot of research before selecting the House Ear Clinic (HEC). I don't know if it is THE best place, as I have read a lot of good things about other places in the USA, but I did like the fact that the entire center (and this place is very large) is devoted to vestibular diseases and hearing loss. Next door to the HEC is St. Vincent's Hospital so if blood tests or MRI's are required it is conveniently reachable. Lastly, a lot of the documents on vestibular problems I had read always referenced Dr. Brackmann and Dr. Dereberry of the HEC so that placed some weight on my decision making process. That being said, when I contacted Dr. Brackmann a year after seeing him and told him the opinion of the neurosurgeon I saw at Sunnybrook Hospital in Toronto with Brackmann's suggestions, Dr. Brackmann knew of him and had very positive things to say about him and the Sunnybrook center. In this field, the top doctors are a very closely knit community.
Thanks again for all your help Nassman - that's some very useful information you provided. And good to hear that the doctors at Sunnybrook are so well regarded. Amethyst
