Vestibular Implant

Hi Clydex and welcome! You might try to post on the main board rather than in this thread; more people will see your questions. At the top right of the main Living Room page is "new topic". Click on that, name your post and ask your questions. I'm sure you will have many answers. VK

 

Any news?? praying for you Gene...

 

I think it sounds alot like bppv...

 

I believe there is something to be said to having a CI implant. A couple month after having my CI implant I have been vertigle free since then (Nov 2010). Don't know if this is related but highly probable. Good luck Gene, I hope you are now vertigle free.

 

Well it's been just over 2 months since I finished the testing at the UW and received the external electronics to operate the implant and I still have not had an attack of vertigo. Again, this is not because of the implant working, but because I have not had any attacks to test it against. I can only guess that this is related to the operation itself and I am very surprised by that. I had some vertigo attacks during the first month following the operation, but nothing since around Thanksgiving. A few have suggested it may be related to the CI operation and I think you may be right. I can think of no other reason for this remission. The attacks up to the operation were very regular and would come in waves, with periods of quiet between the waves, but those periods never lasted longer than a few weeks.

I can't say that I can complain, but I also would love to test the implant and see if it really works.

I'll keep you posted, but right now, I really have little to say.

Gene

 

Glad to hear you are feeling so well but really would love to know if the implant works; although I wouldn't wish vertigo on anyone. Thanks for the update.

 

Congrats on no attacks!

 

Thanks Gene! Feel good. VK

 

Bump. Still nothing Gene?

 

Still nothing...vertigo free for the last three months. It is a puzzle, although one remote explaination is that the period of remission aligns with the last testing of the implant electrodes in the vestibular semi-circlular canals. That testing took place on 12/2 and whether or not it is a factor is only open to speculation. The fact that I did have at least 3 severe vertigo attacks (or waves of attacks) within the first month after the operation basically rules out the operation itself as causing this period of remission.

Again, I can't complain, although I also cannot test the implant without an attack. I've even added salt back into my diet, which only had the affect of raising my blood pressure...go figure.

Gene

 

Glad to hear you are vertigo free although it is delaying the testing. I'm sure Mr Vertigo will show up some time, then you can blast it away.

 

Great news, Gene! Thanks for the up-date and so happy to hear you are doing well.

 

Great to hear you are doing well gene,

have they implanted the other 9 people yet or will they wait until they see if the device works in you first. The fact that they can manipulate and restore your sense of balance/eye movement is great news that was proven in your testing. Neuro stimulation is fascinating and holds tremendous promise to so many diseases.

God bless gene

 

So is it possible that something that was done during or after Genes procedure has resulted in a kind of remission? This is suggesting that possible stimulation of the nerves in the inner ear has somehow helped his menieres symptoms.I do hope that his drs are considering this . Good Luck Gene I really believe that our children will not have to deal with this in the same manner as we do. Larry

 

Still no vertigo, Gene?

 

I hope that is the case. The last time I went in to see the Dr. at Stanford, i asked "Do you think they will come up with something to finally fix this disease?" He said "Yes. But don't hold your breath." He said between 5-10 years, and mentioned Johns-Hopkins. He said one major reason that they have a hard time pinpointing the issue is because MRI's (as advanced as we think they are) cant look into the inner ear. So advancements in MRI technology might advance MM research. Whenever that is.

 

coach m,
my wife is a clinical specialist radiographer and she was recently told by a salesman for siemens that there are a new wave of mri machines coming on the market soon that are light years ahead of current mri machines.
current machines operate on 64 slice per image technology, the new breed of machines can operate 512 slice and may go up to 1024 slice apparently. i am no expert on the subject, but it sounds promosing if the only thing holding back mm investigation is the quality of mri images
fingers crossed.
keep well,
slan abhaile

 

That's interesting. I'm no expert either, but you have to think that if they can get a better sense of what is going on in there, and pinpoint a common abnormality with MM people, then they can figure this nightmare out. I'll keep my fingers crossed.

 

Gene?
Not even a little dizzy, just enough to turn the machine on and see if it works at this point.

Hope you are enjoying your remission/cure.

Don't forget about us.

 

What an incredible story to follow. I am only just now learning of this story and thread but it has been a very exciting read.

Of course the vertigo of Meniere's would go into hiding to keep us all waiting impatiently for the answer, it's just like Meniere's to screw up a plan.

Thanks to Gene for sharing your experience and for being willing to take part in the first place... This is one thread I will be checking back on. Best wishes to you.

Take care.