Well it has finally begun; the first implant to treat Meniere’s disease was done on Gene Pugnettis at the University of Washington by Doctor Jay Rubenstein, a name that many of you are probably familiar with. Similar to a cochlear implant it is a ‘pacemaker’ for the inner ear. When an attack occurs the tiny device will go into action and hopefully stop the dizziness. It was first tested on animals and it was able to control their balance. The machine will be turned on in a few weeks to be tested when Mr. Pugnettis has an attack.
This is certainly good news and in the future, the near future hopefully; it will become a standard practice for Meniere’s patients. For more information go to King 5 dot com which also has an informative video attached.
In a previous post I wrote about Dr. Santina work at johns Hopkins. He is also developing a device that will hopefully stop the attack as opposed to just controlling it. To read the full post go to Dr. Santina and the prosthetic inner ear.
Now is the time to be patience and follow how Doctor Rubenstein’s device is doing on Mr. Pugnettis. This is a terrific first step for those of us who `have suffered with this disorder for so many years. What a great relief it would be if this worked and our lives could go back to normal. We also have to hope that Dr. Santina’s device will be successful too.
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Sunday, October 24, 2010
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19 comments:
David:
you have to believe these doctors/researchers/scientists Feel they are getting closer. With all these things going to clinical trials it may be time to reconsider some of the destructive treatments for a while.
Paul
Will all of this be history in the next 5 years, I have to believe these researchers are slowly figuring this out. Will pray for gene and his suscess.
Susan
David
where does it all go from here? Rubinstein and Santina is this it, do you feel the time has come for some breakthroughs.
I have to believe the riddle could be getting closer to being solved.
All I can do is pray .
Tom
David:
this is good news, the best in a long time. A major step forward. They will gain valuable information from these implants. Time and smart people will one day solve this puzzle.
Rhonda
David,
I am so thankful for this research. This disease is debilitating and life altering and I look forward to simple things like the possibility of driving, eating out, and perhaps taking a vacation without the anxiety associated with attacks. I wish the same possibilities for all sufferers. I will never take anything for granted again, and will strive not to judge anyone with any impairment, obvious or not.
Lita
If it works the meniere's community and all of it's forums, organizations and affiliations needs to honor this man in some way.
In te next few months we could be looking at a solution to a problem that has plagued the scientific community for over 150 years. I know it is not a cure, but to be vertigo free would be a godsend.
Keeping my fingers crossed and staying positive.
God Bless.
Stephanie
David:
I would love to participate n these clinical trials.
David if given the chance would you participate?
So much going on to help us.
1. Menieres lab Austrailia
2. Dr Santina
3. Dr Rubenstein
4. Cell regeneration (Novartis/Genvec)
It seems the scientific community is waking up to this ever growingand expndin problem.
Thomas
David:
gene p, the first implant recipient has posted some updates on menieres.org forum. Supposedly the doctors were able to stimulate all three of his semicircular canals during surgery with the device. That is good news according to his doctors. We are all hoping and praying for his success.
Tyler
Thanks everybody for the comments. I will pass on any information that i find out.
David
Here is another story about this remarkable surgery/device: http://neurosciencenews.com/bioengineering-implant-vertigo-menieres-disease/
I really hope they are on to something here.
thanks Peggy for the link
David
David~
Has anyone heard anything more about Gene P. and the ear implant?
Is it working?
Have they implanted anyone else?
Seems after the initial hoopla of info, to have just dropped off the radar.
That's very common in the media, to start a story with a lot of fanfare, then let it drop completely without following up.
I just did a Google search and don't see anything new, unfortunately. But it seems there were going to be 10 participants in that study, so maybe I'll find something if I do another search based on the study rather than the first patient or his doctor.
It would be great if it works.
Hey Peggy~
The implant honestly working would be terrific news!
Now that I've gone bi-lateral, and the Dr.'s saying there is nothing he can do...my hope and interest in the implant has increased considerably.
I can't help but wonder though if it would only be available to those with very good private insurance, or major available cash.
I am not in either category.
I would like to have been able to try the Meniette device, but alas..could not afford it.
Did you ever get to try it?
DAVID-
Did you have any opportunity to try the Meniette?
(sorry..I'm probably not spelling it right)
I'm having a tough time with these darn attacks lately. They are frequent and strong, and the Valium is even having a hard time keeping them sedated.
Trying not to get panicky about it.
Hoping it will cycle and settle down a bit soon.
I may have to stay off the computer for awhile though. (yikes!)
Take care everyone~
Hi Lauri,
I wanted to get the meniett but unforunately my insurance wouldn't pay for it. It was a little too much to pay out of pocket.
David
David, have you tried the Meniett at all? My ENT specialist has a couple of them in the office that she will lend to patients for a couple of months, to find out whether the device will work for them. I tried it for three months, using it faithfully, on schedule, even when traveling. But I found it didn't really help me. I still had vertigo and even nausea. That's why my doctor lets people try it before they buy a new one.
Lauri, I'm SO sorry you are going through this. Are you anywhere near Johns-Hopkins or any other really good places that specialize in Meniere's and other similar illnesses? If you could travel to one of them, it could help you a lot. Not every doctor is equipped to deal with this situation. Truthfully, there might not be much you can do in this situation, but someone who spends all his/her time working with Meniere's patients might be more help. I'd try a consultation or two with better known specialists.
Good luck... I hope you get a break soon.
Thanks Peggy~
I am being seen at the University of Washington Medical Center now! They are supposed to be one of the best.
Other than the initial surgery done there, they have been no further help..in fact..I am having some communication issues with my specialist, and he is proving to be a problem.
Despite the fact that I relayed to him that I was still having issues following surgery that had me concerned (possibly the "good"ear was actually starting in at that time)he refused to believe me, and insisted I was "depressed" and that was all it was.
Good Lord! I certainly expected more from a specialist at that facility.
Now that the "good" ear has gone Menieres, I wonder what he will try and blame that on?
Weird...weird..weird.
Problem is, now I don't know where to turn for help. Not even sure there is anything else they can do.
I'll keep trying though.
Lauri, try another specialist, if there's someone good nearby. Maybe what you need is someone more open to the idea that Meniere's is an ongoing puzzle, not something that can easily be resolved with one foolproof "cure."
I know it's a nuisance to have to keep shopping around for the right doctor, but your guy sounds like he lacks imagination and adaptability, and both are required to treat Meniere's patients.
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