Vestibular Implant

Looking forward to your update Gene P.
All the best,
TM53

 

I can see what you mean. I'm not sure how i would have handled the fluctuations. Certainly more drawn out.

I have a BAHA but rarely use it bc as i said i've gotten used to being deaf on that side. It doesn't bother me at all now.

 

Re: Vestibular Implant (Update)

Hello again folks,

I wanted to give you another quick update. First, I need to again acknowledge and thank you for all of your kind thoughts, words and prayers. They are very much appreciated! I am progressing nicely coming out of the vestibular implant surgery just over a week ago. I still have some unsteadness (imbalance) and dizziness. It is not vertigo, which was my first assumption, but more related to the "assault" on my vestibular during the operation. Now for the good news...I returned to the University of Washington this last Friday for a status check on my condition and the current plan is to begin the testing, and, as I like to say, "light this candle" on the implant late next week. This will be done over a two day period and is two full weeks earlier than I had originally thought. It may be possible to know by the end of this week whether this is the anti-vertigo silver bullet we all hope it will be.

Since this is not my study, I will need to defer to my doctors on what information I can release to this forum following this testing, as I do not want to steal anyone's thunder, but I will pass along what I can at that time.

Stay hopeful!

Gene P (Patient #1)

 

Much hugs and prayers for you Gene
I so hope it goes well for you and thank YOU so much for posting your progress.
I think we all look at this thread first to see how you're doing.
Thank your wonderful Dr's too at UW for their work on Menieres.
I wish I could hug them all too

 

Thanks Gene for the update.

It's understandable your point about what info you can release here so we appreciate whatever you can tell us.

 

Thanks Gene! It is so encouraging to know that doctors are actually researching some help for Meniere's and patients like you are willing to be the "guinea pigs"! Good luck!

 

Many prayers and hugs for you Gene.

 

This is great news Gene! Fingers crossed that it continues to go very well for you.

I believe based on my experience with surgery that your unsteadiness will go away with time and lots of walking.

Thanks for keeping us posted.

 

Sounds like good news to me! Thanks for the update Gene

Understood about getting permission to post info, do tell us what you can!

 

Bump.

Want to keep this thread on page 1 as much as possible. This is probably the most important post I have seen on this site. Dr R and Dr S both have made big progress on this....that along with the work of cell regeneration are the things I watch carefully. Gene is the Alan Shepard (first man in space for those of you under age 40) of vestibular exploration. (but I think it was John Glenn who said "light the candle") Gene, I hope you can continue to update the board. If you get the word that your medical information is confidential going forward let us know so we will not bug you. Thanks to Joe T and others who contacted me to alert me to Gene's info on .org. Sid.

 

Sid and company,

Thanks for the bump. I too think this is an important item, but then I am biased! The testing will begin tomorrow and Friday on the implant at the UW. I have learned that King 5 TV will be doing a follow up segment and filming during this testing, which tells me that a) there will be another video to watch out for on this topic, and b) that I may be permitted to release some indication of the results, even if it is only at the 30 thousand foot level.

But figure my next post won't be until this weekend.

Best regards,

Gene P
(Patient #1)

 

This is really incredible news. I'll be praying for you Gene and I hope it works out for you. Please please, keep us posted.

David.

 

Thank you for the update Gene. You are in my thoughts and prayers friend.

 

Wonderful Gene,hope it goes well and glad you are doing well!

 

Wow. I used to post on here frequently about 12-16 months ago, but have kind of accepted the theory of "it is what it is". Thought I would check this board for kicks and am surprised to stumble across this. I'm going to do a little research regarding this procedure, but in the meantime can someone who's famlilar with this procedure tell me what it's designed to correct? In other words, is the primary goal of said procedure to rid one of vertigo? What about imbalance, nasaea, tinnitus etc? I would assume (again haven't done a spec of research on this so forgive me for being a dope on the topic!!) that all of these areas would be effected to some degree?

Anyway, if this procedure proves to be the answer, all I know is I'll be a huge Washington Huskie fan the rest of my life!!

Furthermore, Gene will be about as popular as the Beattles in the mid 60's!!

 

And well deserved I might add.

 

JRod,

There's already good information in the thread, including some news stories and video that should help bring you up to speed. Here is a good youtube from the UW that describes the implant and what is hoped for in its application.

Enjoy

Gene P.

Drs. Rubinstein and Phillips discuss the device: http://www.youtube.com/watch?v=iu047vTckvA

 

Wishing you all the best Gene! ((hugs))

 

JRod,

The device is designed to, in theory, counter the vertigo, imbalance related to a screwed up vestibular sending out the wrong signals to the brain and thereby the associated nausia. It is not belieived it will have any affect on reducing the tinnitus or reversing the hearing loss associated to Menieres. For this reason, it should not be considered a cure, but a fix for some of the worst symptoms of Menieres.

I hope this helps to answer your questions.

Gene P.

 

Gene!

Just watched your video of you surgery!!! God I hope this works for you and others!! It has been a long time coming. I have it in both ears and had a VNS done the right.

Here's to a speedy recovery and much needed rest and success!
Take Care
Tuck aka Danny