For those that have had the surgery... Can you jog/run? Ride horses? I used to show horses seriously for many years and have not been able to bc of MM. Wondering if the Laby truly gives 100% releif for ANY activity or are you just less scared bc vertigo cannot happen?
There is nothing I cannot do!! I am as normal as any other 45 year old man walking this earth except I am deaf in my rt. ear.
I feel like the antivirals are not working. I think this surgery may be something I have to consider. I don't have rotational vertigo a ton. I have 6 week clusters where I will have it a lot, almost everyday. Then for 6 months or so, no vertigo but sick/dizzy/naus was everyday. The I get the bad 6 weeks of vertigo again. I haven't driven in 5 years, or had any normal social life. It was definitely getting better on AV. I had great relief for several months, started driving, strenuous exercise, almost to the point where i was confident to ride again and now, six months after starting AV, I am back in bed. The 6 week cycle has begun. I am so confused and honestly sad. I am getting closer to the surgery option I think. I wonder how to go about this decision. I feel like a doctor will just see me once and sign me up. I really want to hear the risks (not normal surgical risks, I understand those) but the risks to my forever balance. Do some ppl have problems acclimating to one sided messages? This seems like a very scary, very permanent step. Any input would be appreciated.
I haven't had the surgery - but did want to share that I have said often that if my symptoms ever got consistent and were impacting my life to a huge level, I would get the surgery. The body has an amazing ability to adapt. SO many people have had the surgery, most (unlike our great friend Bulldogs) never return to this board because they are back to living life. My best advice would be to determine what is acceptable to you - because some doctors may argue that "it's not that bad yet" but only YOU know what you can take! What I read here from others is that the recovery requires effort from you - walking walking and more walking. The more you do it and move your eyes around the quicker your mind can reset.
Horse yes, run no. If I have to run there better be a damn good reason...like someones gonna croak if I don't. You do need to know that you'll have a bit of rehab in order to understand your new balance...it's hard at first but gets easier with time.
12 years living with meniere's, the last 3 leading up to my laby were a living hell. I am very active, a triathlete, swim bike run. I was still doing triathlons with meniere's until I had my first drop attack and then I was done. For me the decision was very easy to have the laby. I had lost all hearing in my mm ear, my head felt as though it was going to explode, I was told not to ride a bike, don't swim and don't drive. I decided to have the laby after many good people on this forum (who have had successful labys) shared their stories. I really felt as though I had nothing to lose. I had the laby 3 years ago and my life has returned to normal. I swim, bike run!! I still have issues with tinnitus and loud rooms. I have learned to adjust to the surroundings that cause me discomfort. My biggest fear is gone, drop attacks. I hear better now with one ear than I did with two. My good ear no longer has to fight with the diseased ear for sounds. I know the laby is not for everyone but if you have tried everything, if you have lost your hearing, and if you are not living the life you want to live it is a wonderful alternative. We all say this, "it gave me back my life!"
I'm. Just curious , does the gentamicin Injection do the same thing? I thought that Was a newer less invasive way of Getting the same results as the laby.
My experience with gentamicin was not very positive. I had only one shot and it did prevent vertigo and drop attacks but after 8 months the spins returned. Plus after the shot it took a month for me to adjust my balance. From that point on I was light headed each day and felt like crap. My OTO offered one more shot or the laby and I took the laby. I do believe I recovered so well from the laby because of the gent shot. The gent had destroyed most of my vestibular system on my mm ear so my brain had already started to adjust to the other side. This is my opinion. I know Bulldog had more than one shot as well as others on the forum. I would not deal with more then one shot because I was so done with living my life feeling like crap.
I agree with Red, I had 3 gent shots and still felt like crap, as Red said, light headed and "off" then I went to Sea Ear Clinic in Tenn. and had 3 Streptomycin shots --- stronger and more powerful than gent (they use Strep/not Gent) still felt like crap. Then I had 3 more Gent back in Atlanta for a total of 9. STILL as Red referred to "feeling like crap" I then called Dr. Rauch at Meei, got an appt, he looked at my chart saw what I had already done and said " if I had an ear like yours I would just take it out" so I did. That was 5 years ago!!! There are still some things I do to protect my good ear, I take a good strong probiotic and I also use Immulox spray to help with my overall immune system. Ps--- there is a member on this forum Hurricaneone, Real name Larry who had 12 gent shots until finally tgrowing in the towel and getting a laby---- He no longer comes around but will answer PM's and talk to anybody and everybody if you reach out to him. He is busy playing tournament/competitive golf all over the place and raising his grandson at amusement parks.
Gent shots do not last so they are just a temporary fix. I need to get new series of 1 or 2 shots every 6 months to a year. They help with the vertigo and drop attacks but nothing else. For example my brain fog got worse with the shots. I never had the Laby so I can only speak for the shots but I assume you it would alleviate more of the symptoms.
Has anyone had their vision effected by the gent shots? I heard a horror story about them causing permanent nystagmus in a lady. She basically couldn't read or drive again bc her eyes jumped so bad. They said it was the gent that they injected in her ears.
I know my vision was bouncing like crazy at first but overtime the bouncing diminished. The key is to walk alot and the brain will retrain itself to the new normal. I still have some bouncing but barely noticable.
I pretty much second everything that redwing said. I don't feel there's anything I can't do that I could do before. I'm a pretty active person and the laby hasn't slowed me down. It's been about 3 years for me now too. Haven't had vertigo since December of 2012! Post surgery, it probably took me about a month to start feeling normal (but I was back working in a week). I would say at 3 months, my brain was fully compensated. The more active you are post surgery, the quicker the recovery. In an effort for full disclosure, I have had some issues in my laby ear in recent months. Mostly a feeling of pressure and increased tinnitus. But the docs think I've developed some other issues (mild chiari malformation), which seems to effect my surgery ear. It's not a big deal. I'll take it over vertigo any day!
Can y'all help describe what the imbalance feels like before your brain compensates? Is it like being dizzy? Bulldogs - I see where you know several stories of people getting double labys and traveling, walk 5k, etc. Can you help me understand what they feel like? Are they dizzy, constantly floating feeling? I wonder how if you needed a scooter bc you were so off balance, how you can enjoy vacation so much. I feel a lot of fear when I get dizzy and often feel nauseous. Do you have any insight as to how these people might cope? Maybe I am a wimp.
I experienced no dizziness post-laby. Initially, just a big-time case of occillopsia. That is, my eyes had a tough time keeping up with body motion. My vision was pretty bouncy and it was hard to focus on something when moving about. Walking helps cure this quickly (particularly walking outside). I went for daily walks, did a little vestibular rehab, and tried to stay active. In my case, the vestibular rehab did little. Walking was the key!
People without inner ear function cannot get dizzy, any dizziness is because some bad signal is still getting through from the ear to the brain. 3 people I talk to often without any inner ear function living normal lives that are members of this forum that no longer come around any more but would be happy to talk to you are AKJIM, Dizzy little Piggy and Sid (Sjow1) as well as MrDizzy (Greg) These people are great resources!!! Reach out to them. They have moved on with life.
From maybe the best OTO in the world--- Dr. Rauch at Harvard (MEEI) Joe- Thanks for your note. If a patient with burnt out Meniere's or post-labyrinthectomy on one side develops Meniere's in the second ear their symptoms are often more intense than the first ear because they have no "spare" ear to help them compensate. However, the treatment algorithm is exactly the same as for the first ear: a trial of diet and lifestyle adjustments, then a trial of diuretics, then a trial of intratympanic steroid injection, then endolymphatic sac surgery (which I do not use on the first ear), then IT gentamicin and, finally, labyrinthectomy if all else fails. And, yes, we can put a cochlear implant in a lybrinthectomized ear. In fact, we can do the labyrinthectomy and cochlear implant in the same operation. There are definitely patients with aggressive bilateral Meniere's who are better off with no inner ear balance organs. -sdr --------------------------------- Steven D. Rauch, MD Professor and Vice Chair for Academic Affairs Dept. of Otology & Laryngology Harvard Medical School Otology Division Chief, Vestibular Division Otolaryngology Dept. Mass. Eye & Ear Infirmary Boston, MA 02114 Tel: 617-573-3644 Fax: 617-573-3939 Email: [email protected] ---------------------------------