I was looking up something on the internet when I came across an article on Meniere’s disease. It seems that someone in Australia is trying to find out how to cure this horrendous and life changing disorder we know as Meniere’s disease. The fact that someone is at least trying to find a cure is very encouraging.
Dr Daniel Brown, a post doctoral fellow at the University of Sydney Medical School, is behind the effort. Dr. Brown has seen and understands the frustration of Meniere’s disease patients who try to look for any way to relieve the symptoms of this perplexing disorder.
Dr. Brown also understands that many times people in the medical profession, who know there isn’t a cure, become resigned that there really isn’t anything that can be done for them.
Here is a great quote from Dr. Brown
"Clinicians all know about it, and know of Meniere's sufferers, but because they can't really help them it gets put to the side," Dr Brown said.
"People have been studying it for the last 100 years and they drop it because they think that's old Meniere's Disease, no one is ever going to come up with an explanation for that or come up with a cure.
"It's done with - we can't work it out."
If you have meniere’s you certainly know what is talking about!
Dr. Brown has set up the Meniere’s Laboratory that was funded by Meniere’s Research Fund, which is comprised of Australian meniere’s sufferers.
It is so good to hear about research being done on this disorder. I wish Dr. Brown much success in his quest to find answers to this horrid condition.
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Wednesday, June 30, 2010
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8 comments:
hey david,
i have actually e-mailed dr. brown a time or two and he is very responsive. first, i wrote just to thank him for his undertaking. then later to ask him a question about meniere's itself. both times i got a response. from reading his e-mails, it is obvious that he really is dedicated to finding the cause of meniere's.
he recently gave a lecture in sydney and a guy over at www.mvertigo.org recorded it. you can listen to it here...
http://www.mvertigo.org/forum/viewtopic.php?f=34&t=2101
i would love to be able to go to australia one day and check out his lab.
hope you are well!
David:
I have also heard of a doctor at Stanford that is on the verge of rwgwnwratimg and regrowing inner ear hair cells. So the hair cells that meniers destroys in your hearing and balance nerves may one day be able to be replaced and we could all have a new healthy inner ear. I wish Dr brown and the man at Stanford the best. The problem with America is that it takes sooo long for the FDA and other agencies to approve anything. They have to go through so many clinical trials.
There is also something called oto 104 in clinical stages that involves sustained release steroids for meniers
talk to you soon
Tom
David :
Having had so many gent injections. So you think you could also have migraine associated vertigo as well that is causing the dizziness and nausea all the time. The reason I ask is because I had many gent shots and still dizzy and found out I also had migraine associated vertigo. No matter how hard it gets just remember it won't kill you. We could all have terminal cancer with little kids and 6 months to live. Somebody always has it worse. Most of the world loves on less than 5 dollars a day.
Love you all
Ron
David:
best decision I ever made after 8 failed gent shots was go straight for the laby. Had mine 10 years ago and not one scent of dizziness after about 2 weeks. I wish I made the choice earlier. It is the one guarantee to stop the disease. i messed around and kept listening to these doctors that don't know squat about what we go through on a daily basis and probably don't care in the long run about us as peole as long as they get paid.
I finally had enough and told the doctor after 10 years I was sick and tired of being dizzy/vertigo stop it by any means necessary. The gent is supposed to be a chemical laby. I had enough of blind perfusions and told them to open it up and tie it out. Best decision of my life. Haven't been dizzy in 10 years.
Talk to you soon
Fred ----good site David
@Nicki,
Thanks for info about Dr. Brown, I'll have to check out his site and send him an email. I'm still a little wobbly from the gent injections. I have one more to go and thats it. I will be glad when it is over.
How are you doing, I hope everything is well
talk to you later
David
@Tom
That's interesting about research going on at Stanford and oto 104 I hadn't heard of either I'll definitely do some research on that. You are right about FDA it takes them forever to allow medicines.
thanks for information and stay in touch
David
@Ron
I know what you mean about other folks having it worse but sometimes it is difficult to think clearly when you are in the midst of this terrible disorder.
I have been lucky that I haven't had any migraine associated meniere's. From what I understand that can really be difficult to handle
thanks for the comment and stay in touch.
David
@Fred
I am glad that your laby went well and you have found relief from it. Right now I am a little leary about having the surgery but it certainly is something that I will consider in the future.
Thanks for the comment and stay in touch
DAvid
David,
Thanks for posting this about the Australian research. Good to know that someone is dedicated to finding out more. The lecture is interesting in the questions it raises about the symptoms/causes of our illness. I guess some of those unknowns really need to be resolved before progress can be made.
David:
I have had meniers for 25 years. Been deaf for 15.
David:
My personal belief is that meniers is an umbrella term for a diseased inner ear and there are many things that can cause a diseased ear. Genetics, virus, autoimmune disorder. Meniers is the final pathway for the disesed ear. As a patient of dr Hain in Chicago I personally feel after many long discussions with him that cell regeneration and cell regrowth for the inner ear is our best bet. He seems to think 5-10 years away.
Love you all menierians
Walter ---Texas
@Jeff
you are so right about finding the root of the problem first
DAvid
@Walter
I have heard another doctor say that meniere's disease is sometimes used as a catchall phrase.
thats interesting about Dr. Hain thinking that it would take 5 to 10 to develop cell regeneration. I just hope it happens at some time
thanks for the information and stay in touch
David
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