Laby surgery ?

Hi Shelly

Surgery on a Thursday at 10:00 am
Friday morning (next day) walked out of hospital.

First 2 weeks---- lots of walking on all types of terrain. A little off balance as brain adjusts.

At 2 week mark driving.

At 4 week mark riding a bike and swimming in the pool.

At 2 month mark driving 80 down the highway, surfing, flyfishing, water skiing and wakeboarding!!

Shelly---- you may not get many responses because most of the people who have had th laby have left this forum forever to live their life as their is no need to hang around.

Good luck
Welcome to the forum.

 

My surgery was on Hallowen 2 years ago. I walked out the next day. I had a little surprise when I woke up with double vision 2 days after surgery. It freaked me out but once I learner it was normal I was ok. I started walking A LOT!! This makes all the difference in a fast recovery. As Bulldogs said walk on different terrain and make yourself look straight ahead when you walk. You will want to look down. There was very little pain associated with the surgery. I was driving after 2 weeks. I joined a yoga class that was helpful for balance. Today I still have tinnitus but I can live with it does not really affect my life. I am very active hiking swimming biking. I love the outdoors and choose to be outside as much as I can. I have a wonderful active life.

 

Shelly

After the laby all the drop attacks, vertigo, light headed feeling goes away.
The way it was best explained to me was I have a diseased ear sending bad signals to my brain, it was best for me to just stop those bad signals. The Brain will adapt and a normal feeling will return.

Walking on different surfaces (hills, grass, sand, hard surfaces ) helps your brain and balance make the necessary adjustments.

I had 9 gent shots and while they stopped the big vertigo attacks I still felt awful, so I had a laby.

The things I tried are low salt diet, water pill, NUCCA, JOH regiment, inner ear steroids, shunt, 9 gent shots, high dose vitamin C, IV vitamin C, antibiotics, anti-fungals and much more.

My philosophy is try everything you can and if life is unbearable and you have reached the point of giving up on life and can't take it anymore, just know there is a way to fix your problem. That threshold is different for everybody.

Get the best surgeon you can find. I recommend those at the big teaching/research hospitals. Now the laby is done where they leave the snail portion if the ear in in case one needs a cochlear implant at some point down the line.

Hang in there, always know there are options to get your life back!!
Good luck

 

Shelly, not to change the subject away from surgery, but in the meantime, have you tried meclizine? That does nothing for me for full vertigo attack, but a while back when I was "dizzy" and off balance 24/7 I remembered it (after 3 wks of suffering!) and immediately found some relief. It is available over the counter (in US) and some stores even have their own generic/store brand version.

Just thought i would share.

With regards to the surgery, I am not at that point but from what you said I would think that surgery could be a good option for you. As it stands (no pun intended) you are off balance now all the time so in effect you are already "retraining" your body to use the balance systems you have left. Both Bulldogs and Redwing were back enjoying life within a couple of weeks!

 

Shelly,

I had the Laby in May, 2013 after almost 10 years of dealing with this beast. My experience is a bit different than the other two, but the end result is the same--so glad I did it! I did not have Gent injections ever so I believe the recovery for me may have been a bit longer because of that. Also, I was in the hospital four three days because I developed a cerebral spinal fluid leak and my neuro had to go back in and fix that. All that said, waking up after the first surgery was one of the weirdest things I ever have experienced: everything appeared sideways in my vision. I closed my eyes pretty quickly after that and stayed that way for several hours. Things were better then. They give you a scopolamine patch before surgery and that helps with any post-surgery vertigo or spins as your brain adjusts. I used a walker for a few days after being home and just like the others it was walk, walk, walk after that.

Now to the hearing...I had what they call, "no serviceable hearing," in my affected ear so the change from that to being completely deaf in the affected ear was not that drastic. As a musician, I had dealt with my hearing loss emotionally several years before the surgery. Positioning yourself strategically when socializing is a must. Also friends and family who are empathetic to your condition and make the effort to ensure you are hearing them are a huge benefit. I have the Bi-Cros hearing aid and that is helpful at work for meetings, but it can be a hinderance at crowded gatherings as it tends to amplify all the sound you don't want to hear, thus making it even harder to hear the conversation you do want to hear.

So just about two years later and I am vertigo free and enjoying life!

Sorry for being long winded, but I hope it was helpful. I was 46 when I had the Laby.

Best of luck,

Kevin

 

Shelly, it sounds to me like you are a perfect candidate for surgery. Especially due to drop attacks. Having a 19 month old and trying to deal with meneiere's sounds like a nightmare to me. I am so sorry you have to go through this.

Prior to surgery I did have luck with low sodium diet and diuretics for a good long time. I also would take 2 mg of Valium when I felt a vertigo attack was coming on. I could tell by the roaring of my ear and the aural fullness that vertigo would follow. I did have one gent shot. My OTO offered another one but he believes after 2 if it has not stopped the spins then it most likely is not going to. I chose to have just one because the first one made me feel like total crap all the time. It did stop my vertigo for 8 months before the spins started again. I call them mini spins, quick spin of the room and then it would be over. I hated the fact that I was in constant fear of having another drop attack. That's when I said no more, I reached my turning point and had the surgery.

I had no issues in regards to spins after the surgery. Most likely due to the fact that I had the gent shot and that killed off some of the vestibular nerve. I do believe if you have had gent your recovery will be easier.

In terms of my hearing, my husband says I hear better now than I did before the surgery! He can't get away with anything now, ha ha. My hearing was pretty much gone before the surgery. I believe my diseased ear was in constant battle with my good ear. When I was having an attack my bad ear roared like a lion and felt 3 times the size it should be. Now I have mild tinnitus and my good ear no longer is fighting a battle to hear. Does that make sense?

Shelly I will tell you this, if you are suffering and it sounds like you certainly are and you have tried alternative treatments and have not found relief then do not be afraid of the surgery. I hope this information helps you. Don't give up on this my friend, there is hope for you.

Peace

 

My surgery was Dec 2011. I walked out of the hospital that day and started a new life. The key for you will be to stay very active doing all kinds of activity. Your brain will retrain itself quicker if you get up and get going. You can expect to be 95% normal at 12 to 18 months and 98% at 24 months. I was playing golf tourneys 4 weeks after surgery and we just got back from six flags , where I was able to ride what ever I wanted. PM me anytime you need to talk or ask questions. I still visit this board from time to time because we are all family and we do need each other. PS I did try everything including 9 gent shots.

 

Hey guys tanks for sharing your experience can you tell me if heres one of you who is infected on both sides? and have experience with surgerys? If yes it would be verry nice to hear it. And whats about your Tinnitus and Hearing lost any experience you can share ?
Thanks so much

 

For me, my head never felt "clear". I felt like I was waking up with a hangover every morning. I was always off balance. Going into large stores like Sam's Club or Home Depot was unbearable. The noise inside my head was out of control and I had daily "brain fog".

 

It is the norm for you to feel off or bad after the gent shots. This means the shot is working and killing the balance nerve yet it is not hurting the hearing nerve. Gent does work for some but for many it never gets all the balance nerve which means the part of nerve left alive will cause you to feel off , and sick most of the time. You can as I did develop drop attacks at some point. When this happens you put yourself and everyone you meet on the highway in danger. For me the Laby solved all my issues with menieres. My tinnitius in the deaf ear is a very low hiss that I hardly ever notice. I will tell you what my friend who had the Laby several years ago told me as he was guiding me through my hard decision of should I or should I not get the Laby. David said life is to short as it is so dont let this monster control your life. He said as far as menieres going to the other ear , if it happens then it was going to happen anyway so we will deal with it then. In my case my otoneuro thinks mine most likely came from a severe blow to the head. Good Luck. Lets all pray for a cure so that our love ones will never go through this. Larry

 

Luckly gent shots cured my drop attacks. If I started getting drop attacks again I would get a laby or vns in a heart beat.

 

Hi

I have had a lot of gent treatment and get the 'off balance' feeling that redwing1951 and Bulldogs describe. Its a big improvement on the vertigo attacks I used to get but I am finding that this feeling does limit my life in being able to cope at work, and feeling confident enough to drive. I have some vestibular exercises to do which I'm hoping will help.

A question to redwing1951 and Bulldogs and others who have have a laby. Do you get more quickly fatigued as you only have the one ear that is helping you balance and that your body needs to work harder (in terms of needing more visual input and more input from proprioception)? After you had recovered from the laby did all the 'brain fog', woozy, lightheaded feelings go away?

I think a laby is a long way off for me, mainly as I have a lot of hearing left in the affected ear so I think I would be refused on those grounds.

thank you!
baloo

 

A question to redwing1951 and Bulldogs and others who have have a laby. Do you get more quickly fatigued as you only have the one ear that is helping you balance and that your body needs to work harder (in terms of needing more visual input and more input from proprioception)?No, absolutely not. Once I recovered from the surgery and my brain accepted the fact that I only had one sided hearing and vestibular nerve I felt great, I do feel great. I have more energy although... I do love a little nap in the afternoon. Nothing to do with meneires, just love a nap


After you had recovered from the laby did all the 'brain fog', woozy, lightheaded feelings go away? Yes it did. The only symptom I have now is tinnitus, very mild. And I have had a couple of episodes where my mm ear has felt a little fullness, pressure. I think it is weather related. My OTO told me that with a laby I would no longer have vertigo. He could not promise me that I would be free of the other symptoms, aural fullness, tinnitus, brain fog. You have to remember, a laby takes care of the vertigo and drop attacks but you still have meneires so you still might experience the symptoms. I am fortunate in that all I have now is the tinnitus. Most of my laby friends are symptom free. I hope they will share their experience for you.

 

For me once my brain retrained my energy level completely returned to normal. I can now do what ever I want and never have any problems . The brain quickly learns to deal with its new signals. Also even though I am deaf in the left ear I hardly ever notice any issues. I do think that you need to stay moving, going about your life as soon as possible. If you read some of my post from the past you will hear me talk about brain fog , fullness , plus other issues. After my surgery these issues went away. My otoneuro said that there was a 50 % chance that my tinnitus would be better. I was one of the lucky ones and my level is very low. Good Luck PM me if you need to. Larry

 

What Larry/Hurricaneone and Red said above^^^^^