Discussion in 'Meniere's Disease "Database"' started by Buffy-Again, Feb 6, 2008.
Thanks for the info
Calgary, Alberta, Canada.
For entry-level (getting the diagnosis and initial meds), Dr. Joe Warshawski (ENT) is a lovely man, and seems to be able to see patients within a 2-3 weeks.
For neuroOTOlogist (if I got that right), "The Dizzy Lady", Dr. Beth Lange works in the same office as Dr. W. I've heard mixed reviews on her bedside manner and dealings with disability insurance, but she knows her stuff in this area. I may get a referral to her soon - I'll keep you posted.
For good hearing tests, I think it is worth the money to see an audiologist.
I was just back to Mass Eye and Ear yesterday. My two docs are Dr Smullen (female) in Otology who gave me my first gent injection yesterday and Dr. Lewis who runs the vestibular lab and is the Neurotologist (on the Harvard research team too). They are a fantastic team, but it does take a long time..... Granted my case is complicated and they wanted to be sure before doing anything destructive. But very compassionate and listened and finally treated me!! First to do anything for me!
I was recently re tested and diagnosed in Portland, Or by Susan Doucette she was AWESOME, very caring and knowledgable and a great team that does the testing. Her address is at 1040 NW 22nd Suite 460 Portland, Or 97210. The phone # there is 503-413-6744. They also highly recommended Dr. R. Sterling Hodgson who is a Neuro-otologist. His address is 1849 NW Kearney Suite 200 Portland, Or 97209 the phone # there is 503-553-3664. I havn't been to see Dr. Hodgson yet but I have an appointment with him on the 16 of this month. Everyone we have talked to highly recommended that we see the best and these are supposed to be the best here in Oregon!!!
My first ENT was Dr.Derebery at The House Ear Clinic in Los Angeles.I now live upstate in San Mateo and have seen Dr.Jennifer Bock Hughes in San Mateo.I would have to say Dr.Derebery is the better doctor although I sometimes sensed that she was rushing me.I know she's very popular and busy.I also know that she did Rush Limbaugh's CI.
Actually according to what i have read, although dr d did see rush limbaugh to see if she could help with his hearing loss, it was another dr at house who did the CI.
Thanks for the correction June.
I saw this Doctor ,and he was terrible. He did nothing for me. Wrote me off. I am still looking for the right Doctor for help.
Does anyone know who the best is in the country? I am willing to fly there, and get REAL treatment. Pay it out of pocket, if needed. I am despearate with no real medical help available where I am.
I have presented my research at the House Ear Institute. They are very good. One of their researchers was kind enough to present at our National Meniere's Seminar last year in Ventura, CA. This years seminar for doctors and patients will be in Grand Rapids, MI on Saturday, June 23, 2012. Then I will be speaking and consulting with Meniere's patients in New Zealand in July. More info at www.MenieresResearch.com
On the lower coast of Florida, the Silverstein Institute in Sarasota is the place to go. It's world class. Dr. Silverstein invented the surgical method for avoiding damage to the hearing nerve when doing surgery on the balance nerve in the inner ear. His partner, Dr. Jack Wazen, wrote the book Dizzy--a very comprehensive and informative book. I live about 90 minutes down the coast from Sarasota, and I drove up there many times. That's where I got my original Meniere's diagnosis, ENG tests, etc.
But once I was diagnosed and on the requisite drugs (Diazide, Allegra, Xanax), I wanted to find a local doc who could track my progress. I found Dr. Samuel Hill in Naples. He also does a lot of allergy treatment, which has helped me a lot. I was getting sinus infections like every six weeks, which made the Meniere's symptoms flare up like crazy.
This sounds very promising. Any way of getting Menieres Disease and this research more media attention?
That's what would really make a difference I believe.
Thanx, for posting it here.
Good Luck with your research!
In NC, Dr. Calhoun Cunningham, Duke University. Dr. Craig Buchman, UNC
I noticed a few pages back someone recommended Dr. David Kaylie at Duke. I DO NOT recommend him at all. I went to see him in 2010 because he was covered by my insurance plan and my regular doctor was not. I was at the beginning of an episode of hearing loss. After looking over my chart and spending all of five minutes with me, he proceeded to tell me my hearing was not coming back and wanted to send me for a BAHA consultation right away. I asked if we could try prednisone anyway and he reluctantly agreed. When the hearing continued to fluctuate after the first round of prednisone, I knew I needed another but he refused to prescribe or offer an IT injection. I was forced to beg an urgent care doctor for some help and managed to get that episode under control, but not before losing a good chunk of my hearing permanently, maybe because Dr. Kaylie was more interested in surgery than he was in saving my hearing. He's also leading a very controversial trial with spinal fluid. Patients I've spoken to about this trial are raising red flags about the safety and efficacy of his protocol.
Also, I can no longer recommend Dr. Buchman for MM patients. He was full of misinformation about the disease and not very helpful over all, suggesting that I should "live with it" and "wait for my hearing to go out completely."
Shart: what are you looking for in a doctor? I guess it differs for everybody!
For me I expect 2 things from my doctor.
1. The Truth and Respect
2. My Options
That's all I expect.
I don't expect understanding, sympathy, a shoulder to cry on ect....... That is for my family and loved ones and if they cannot provide it, then a psychologist/psychiatrist---- that's their job, not my OtO's .
My 2 favorite doctors
They both told me the truth about his disease and my 2 options gent and laby.
I guess Dr Kaylie was right--- there is nothing they can do for your hearing loss---- that's the truth
And for people loosing their hearing the options are hearing aides or CI.
Sucking down prednisone, vitamins ect..... Is going to cure it long term. When a HA no longer works then it's the CI's turn.
Everybody wants different things from their doctor but in he end he truth is we have a disease with no known medical cause or cure so it then becomes What are my options to make my life as normal as possible.
Both he truth and the options are harsh sometimes but at least we have options.
I don't know, BD. I've kind of been thinking the same thing with regards to knowing when it's time to call it quits. I don't need a shoulder to cry on, or even necessarily a doctor with fabulous bedside manner. But, the fact of the matter is that both Dr. Kaylie and Dr. Buchman were wrong on several counts. How could I trust them to know what next steps, if any, I should take?
Trust is definitely a must.
U know what I would do, get the CI, walk in and tell them I can't hear shit and I am done with the steroids ect.....
If I had to intentionally fail a hearing test to get it, so be it! You know you can't hear shit and life is miserable so who cares about that little box, complete silence and little beeps--- we don't live in a soundproof world.
When you worry about that little bundle of joy, burglary, fires, yells for help from your kids ect..... It's time to solve that problem.
I'm walking with you side by side my friend. You will know when it's time to take matters into your own hands.
I hate this fucking disease!
This is one of the happiest follow-up blogs I’ve ever written. I posted a week or so ago about being diagnosed with Meniere’s disease. It is an inner ear disturbance, affecting one ear. It is of unknown origin, with no cure. I have a mild form, (only roaring in my ear, partial hearing loss and mild vertigo,) but it can cause severe vertigo, vomiting, and complete hearing loss. I was diagnosed and told by my ENT that my only option was a diuretic to reduce the fluid in my ear, but there was nothing to stop the inevitable decline. He’s a great doc: he did 4 surgeries on my son, starting when he was only 18 months old. I couldn’t believe that’s all he had to offer.
Not at all happy with the idea of slowly losing my hearing; and possibly falling down and throwing up, I started down the research path and discovered an article about a chiropractor in Michigan, Dr. Burcon. Years ago, he had patients in his practice who were suffering from MD, and had a quick recovery from vertigo after adjustment to the upper cervical vertebrae. He began piecing together histories and discovered that past injuries, (on average, 15 years old and primarily whiplash,) had left these patients with an unresolved upper cervical misalignment that resulted, years later, in the development of Meniere’s due to compression, “creating a lesion affecting the Eustachian tube and/or the Trigeminal ganglion.”
He developed a specific protocol of care, and was able to eliminate vertigo in 291 out of 300 patients. I contacted him directly at his Michigan office, and he told me more about the treatment, and whom I could see in the Los Angeles area, (there are only two chiropractors who are well versed in this treatment.)
I had my first visit on Tuesday. After a series of tests and 9 x-rays, he told me my skull and spinal column were indeed misaligned, and showed me where and by how much (only 2 mm!) After two tiny adjustments, I went home with the same roaring/rushing sound in my ear that I’d had for five months.
However, when I woke up the next day, it was gone, and I could hear perfectly well. No kidding. As explained, and as I already understood about chiropractic, adjustments don’t hold (especially if the injury is old, and the body has been compensating for it for years.) So, by the end of the day, the roaring was back, but not nearly as loud. I went again today, and will go every two days or so, until the muscles and tendons in my neck begin to return to their healthy position. This may take a few months, but the fact that I woke up symptom free and able to hear after 5 months, made me a very happy person. Dr. Hall told me “If you aren’t greatly improved by the end of this, I must be doing something wrong and you can blame me, because I know this works.” I believe him 100%.
Moral of the story? Be your own advocate, don’t blindly listen to one doctor, think outside the Western Medicine box, try everything. And if you find something that works, share it with everyone you can!!!