Discussion in 'Your Living Room' started by Gene P, Oct 18, 2010.
Just kidding about the study?
I wonder where the other implantees are? Maybe they are having vertigo. I think the study called for 10 implants. Maybe gene can tell us if anyone else has been implanted yet and they just don't come to . Org
I take it very serious more than you know.
I too am considering a laby, vns.
The point I was trying to make is that gene will come back when he has an attack he has said that on this thread. I hope he is in remission for many years, he has been through hell as most of us on this thread and their family members. I hope he never has another attack for the rest of his life. Other people will be implanted if you read the study, it calls for 10 humans to be implanted, maybe they have been implanted maybe not. We are grateful for Gene to let us into his life and experience.
As for WileyRiley post: the gent does not destroy the nerve itself, only the hair cells and dark cells which produce endolymph.
I am a patient of dr Della Santina who is developing the weapon that may hold the cure to this crap if you go bilateral. As was stated on a previous post by Called maybe there is help or a cure on the way the word is Dr S will not implant someone with a vns and possibly a laby as well. I will verify on next appt jan 27 and let Sean know.
If did not take it serious I would not have traveled the country House, Shea, Emory , and now Hopkins looking for answers.
i know that i have made that mistake before because the terms are thrown around so loosely but i have since corrected myself and am always very careful to make that specification. if you are referring to the post in the "forum time" thread, the question posed was purposely worded that way so that i could come back and help others with it. there was much more to the e-mail that we did discuss that talked about the gents specifically that didn't feel needed to be copied and pasted in that thread.
I truly hope we all find answers and eventually a cure.
I will dr Santina and ask any questions we all have.
All he has ever told me was keep the nerve connected at all cost because this stuff will the a while to get here, but it is coming.
With that being said I will likely have him do a laby for me, if he promises to put me in his trial if my good ear goes bad.
To insinuate people don't take it serious is ludicrous.
I hope gene never comes back, that means he won. Why do we pull for him to have an attack, they are horrific as we all know.
The best way if you want answers is to call or email dr Rubinstein directly and get all the infor you want. You may could get in the trial still.
God bless everyone with this crap.
Gene it is great you have had 3 months free of the beast. Hope you have 20 years.
If you want to know if the treatment works call or email dr Rubinstein.
He may have more information on other patients implanted. He will share information, he has to, it is a government trial.
I can't believe you want this man to have an attack. I don't.
If I want information call the lead investigator/sponsor of the study or make an appointment to see him. Seattle is beautiful.
Just don't make accusations peole don't care.
With all due respect, Bulldogs, many of us are suffering immensely NOW and cannot delay making difficult decisions waiting for some uncertain "cure" to come along. Everyday we lose to MM, is one less day we have to experience life with the people we love.
There could be a cure out there today, but it could take 10 years to get through FDA. So to discourage people from making an already serious and difficult decision is really not fair. Let's not hi-jack Gene's thread of hope here. If you want to continue this discussion, I suggest starting a new thread.
Gene, and everyone, we wish you ALL well.
Wides on the floor:
if you would lime for me to ask any questions to dr Della Santina on your behalf or your wife's I will. I have a lot of my own as I am considering vns, laby too.
His trial may start in about a year?
Please pm me if you want any questions answered by him on behalf of your wife. Things like what happens if I get a vns or laby and go bilateral.
I will do that for you.
This thread is too important.
Sorry Folks for not being around for awhile, but I have had nothing to report, other than I have been in a period of remission for about the last 6 weeks. Although I expect the vertigo attacks to return at some point, I've not had an attack since before I received the external processor that makes the implant stimulate the inner ear balance center. My lack of attacks have nothing to do with the implant, however it is a possibility that the operation may have caused the remission. I'm not sure I buy that, however, as I have had vertigo attacks since the operation (10/21/10), but none since the testing was completed.
This has been the longest I have gone without an attack since my Shut surgery, which has been pretty nice, but I also know that we can't prove the technology until I have something to test it against.
I will update this thread once I have something to report.
Enjoy the remission Gene!
That's great Gene that you are in remission. I guess it must feel like a mixed blessing though, as I am sure you and your doctors would like to be able to see how well the implant worked. Thanks for keeping us posted on your progress. Best of health to you!
Thanks for the update Gene - hope you enjoy the remission!
Thanks Gene, Although no vertigo how have the other symptoms been? Any brain fog?
Thank you Gene.
Godspeed to you and everything you share is much appreciated.
I am obviously not a Dr but I know that in some cases vertigo is eliminated when you get a CI. I think the implant that Gene got was very similiar to a CI that being an electrode inserted into the cochlea, so if that is the case then is it not possible the electrode array has indeed caused the remission?? Also some CI recipients experience horrendous vertigo post surgery but after a few weeks never have it again.
Wouldn't that be something? A cure for vertigo is the surgery it self--not the device that was implanted?!
THere are also people who never had vertigo before, and after a CI now are afflicted with it on a regular basis. Don't think the implant is a vertigo cure. Sorry.
No i know its not and I didnt mean to imply that it was but what I was getting at is that some peoples vertigo gets better after a CI. I am a member on a CI board and have spoken to many whose vertigo has gotten better. That being said I have also heard from a few who have it now and never did.
This is the reason that they will not even consider doing bilateral implants on me as I only have vestibular function left in the one ear and they are not willing to do ANYTHING to that ear until the vestibular system has died on its own.
Sorry if I confused you.
im a newbies of MD it was started last year 2009..
1. vertigo/ dizziness (as if u were getting drunk)
2. 24/7 tinnitus but 95% the 5% still remaining in my right ear.
3. i dont experienced ear fullness or deafness
4.sometimes when i put my head ( in a certain angles/position) in the affected area like in my right ear then about 5 sec ill get dizzy/vertigo or having some jerky head movement but when i move my head to the center/normal position then dizziness will subside for a matter of seconds.
1. my questions is this meniers? meniers-like? or BPPV?
2. is meniers symptoms has always ear fullnes/deafness?
3. is BPPV has tinnitus?
my MRI reveals NORMAL
4. my VNT(Video Nystagmogram Test reveals) (+) gazed nystagmus so it means this is a clear indication that i have a problem on my inner ear? am i right?
5. can you recommend john ohio regimen's?
like taking lemon bioflavonoid, is this a great help?
6. do you experienced jerky head movements?
please i need your answers if we have same symptoms.