This has taken over my whole life

I can't remember if you said or not....Did your dr prescribe you lorazapam/ativan to take in case of attack? It is highly addictive so definitely not something to be taken just in case, but for me the pill placed under the tongue will shorten my attack from 4-6 hrs+ down to about 1-2 hrs.

Last, but not least, I will tell you that if I started getting consistent attacks like you are experiencing and they lasted for 6+ wks consistently I would be pushing my dr to just do the surgery. I know that a VNS or Laby is a lot of people's "last resort" - but to me if I was not able to live my life than I wouldn't want to wait for another 2 yrs of suffering trying everything else. I would do the surgery, get through the post-op and then forget about this darn disease. Know that there are options. There is hope!

 

I agree with everything nicmger just said. Do whatever it takes to get your life back!

 

moodymom27,
I absolutely agree with Sharon406 and nicmger.
... and I know where you are coming from as the cluster of my attacks started in late September and has countinued until now. I had 3-5 severe attacks per week since September until the beginning of February. It has been ( gradually) better since I started AVs &JOH(January), high dose of Vit C ( March) and now Monolaurin(April). However I still cannot say , as much as I would like, I am attack free! During my last appointment with ENT I was told I qualify for EDB surgery and I agreed to it. I wanted a destructive one but th answer was negative. I know that I will have to wait at least 4 months!! but it doesn't matter. As long as I am helped! The question I have been asking myself very often is " do I want to live a (fairly) normal life ( even if deaf!) or continue with this life from hell for God knows how long." The answer is the only one.
I missed so many days of work just like you. I work in a public sector so I have been paid for all absences. Lucky me, I know. However ,3 weeks ago I had my first formal meeting with regard to the absences and I was told if I continued having so many days off I would lose my job. As simple as that!
It's your call. Fight for your life!

 

Laby Time---- you don't have to live like this.

YOU CAN HAVE A NORMAL LIFE!!!!!

 

The Laby gave me my life back , so go see a oto-neuro and ask either the laby or vns Dont let this monster control your life .

 

Everyone on here tries to sincerely help each other and also wishes the very best for each other. No exception here on this thread. You need to do what you think is best, but since you are not on anti-virals yet maybe now your doctor will be more agreeable given your situation. A VNS although successful for some is invasive . I would try a.less invasive approach first. Take care. You are courageous and you will find a solution.

 

I wouldn't wait for the doctor to suggest anything because they each seem to have their own agenda. they are not the ones having to try to live with this. They are not the ones that can't make plans, go to work, etc because of this thing. You have to fight for yourself. You have to be your own advocate. I stand by my earlier post - even if it takes several drs, find one and have the "destructive" surgery. Destroying that ear sounds bad - but honestly it is NOT doing you any favors right now. Your body is already learning to compensate for the bad ear. Surgery is 100%, surgery gives you a definite timeline on when you get your life back. No wondering "if" today is a good day or bad. Wondering if you can go to work. Understand - I have not had the surgery and thankfully the a/v are working for me. But if I was in your shoes I guarantee I would be sitting in that waiting room refusing to leave until the dr scheduled me for surgery - and surgery being VNS or Laby.

 

Keep a smile on your face - while you may be walking with legs spread wider...You are walking! There are times I have had to crawl so walking is good! AND I would bet money that the only people even thinking of how you look walking...is you. LOL We are all very hard on ourselves.

 

VNS = vestibular nerve section; where the physician cuts in and severs the vestibular nerve going from the inner ear to the brain. The brain no longer receives aberrant signals from the dysfunctional Meniere's ear. One becomes permanently deaf on that side.

--John of Ohio

 

How long has it been for you hurricaneone?

 

I've had a VNS. A laby destroys, the VNS preserves any hearing you have in the operated ear. In my case, an incision was made behind my ear, in a C shape, from my temple to just below the earlobe. A piece of skull was removed. The balance nerve was located where it leaves the innner ear and was followed to where it enters the brain. The brain has to be lifted and pulled forward slightly to get to that spot. There, the nerve was severed. As standard procedure, there is an overnight stay in ICU. It was successful, but I've become bilateral since then.

 

Yes, just a little bit to get to the spot where the nerve enters the brain. I had the middle cranial fossa approach. There are other approaches. With the one I had, there is less bleeding, it's easier to get to and see the nerve and it gives the surgeon the best opportunity to completely sever the nerve. If even a tiny fiber is left intact, there can still be vertigo following the surgery. In other approaches, fibers are sometimes missed and spinal fluid leaks and post op headaches are more common.

I still had hearing in the ear. My surgeon said any hearing is worth saving, so I went with a VNS instead of a laby. Labys are easier to recover from.

 

I had the laby nov 2011 and I was playing in golf tourneys a few months later . I wish I had the surgery much earlier because I would have suffered less . The key is to start doing everything you can as soon as you get home from the surgery . I actually walked out of the emory hospital . I am now 99% cured from this monster . Being deaf in the left ear has almost no effect on my life .

 

I had a very successful VNS..Was 3 day recovery in the hospital though and then a month of intense rehab but never had one MM attack since, although I still have ringing and hearing loss in the ear that was operated on. I would do it again in a heart beat!