Hi. I've been suffering with this accursed disease for around 8 years. Over the last 2 years it's gotten progressively worse, with a particular acceleration over the last 6 months. Almost constant fullness, dizziness, imbalance and brutal tinnitus. Vertigo hitting every day and coming in waves, sometimes 10 instances within 24hrs. All the fun things we're all so intimately familiar with. As a result of this I've made the difficult decision to go for a laby (difficult because, although my hearing is impaired I still have some function) in a bid to get some type of a life back. I'm booked in for the 13th July. In all honesty I'm scared and still laying awake at night wondering if I'm making the right decision opting for the laby over gentamicin. My reasoning is mostly the "what if" of the genta being successful but then the MD returning in future and having to go through this all again. It's the finality of the laby that appeals, at least that's what I tell myself! With that in mind I was wondering if some of those who've had the procedure may be able to offer me some insight into life post laby. I've read through some of the threads charting peoples recovery so I'm aware that the first few days are gonna be hell, and then it's a long road of hard work of recovery after that (lots of walking I hear!). With that in mind I had a couple of questions: Are there things that are significantly more challenging after a laby that you didn't expect? Pre-meniere's I enjoyed rock climbing/bouldering and mountain biking, activities that require a reasonable degree of balance... am I likely to ever be able to do these again? I was also learning to drive and had to shelve that, remain hopeful I might be able to try again once fully recovered but don't know how realistic that is? I've read that one of the biggest challenges/issues of becoming single sided deaf is being in loud, busy places where it becomes very difficult to understand conversations and can be very fatiguing. Just how impactful is this, is it something I'm going to want to avoid or will I be able to go out to a restaurant with my wife and be able to have a conversation? (Believe CROS systems can mitigate this to a degree?). And speaking of restaurants, will I ever be able to have a small glass of wine with my meal again? Was not a big drinker pre menieres and not touched a drop in over 5 years so no big issue if not, but this damn disease has stripped away so many things I enjoyed over the years that if I can I'm gonna try and get as many back as possible! Does anyone regret getting the laby? Sorry if these seem silly, and would appreciate any other insights that people may be able to offer. Just trying to get a sense of what's realistic post op & recovery (assuming success and no complications).
No regrets! Nothing unexpectedly more challenging. For me, I had no serviceable hearing in my laby ear pre op so being single sided hearing I pretty much was for the most part. The brain adapts remarkably, but it does take a little time. Loud social situations are challenging, but if it’s just you and your significant, you can strategically sit with them on your good ear side. As far as physical activities post op: I ride motorcycles! No difference in my ability to balance a motorcycle pre-op vs post-op. Keep in mind, it took some time after surgery before I had the confidence to get back on a bike, but when I did, I was overjoyed that I could still do it. Laby slays the vertigo beast and gives you your life back! Keep in mind that you still may have tinnitus on that side. Had my laby in 2013 and still have a very high pitched tinnitus on that side, but doesn’t really affect me unless I really concentrate on it. Also, I don’t experience ear fullness anymore either. Best of luck and keep us posted!
No regrets at all!!! Aug 2019 is when I had my laby, vertigo attacks every 7-10 days, drop attack at the office slammed me into the filing cabinets as I was sitting at my desk, lost my drivers license because of the attack. I did get a second opinion from the doctors at MEEI in Boston about gentamicin but decided to have my laby done locally. I'm a hiker so getting back out on the uneven trails really helped my brain adjust to having just one labyrinth. I believe the more you push yourself the faster the recovery. I noticed my vision would bounce with my steps but was gone in a few months. Being in a noisy environment is difficult for me, most of my friends know about my hearing loss and are understanding and yes, I keep my good ear to the people next to me. My hearing aids are Siemens Signia CROS and do help a lot but during bowling night, the background noise is just too much and I sometimes pull them out. I no longer watch my sodium/caffeine/alcohol intake as that has no effect since the surgery, I'm back to my regular scheduled programming- fishing, hiking, bowling and running a business! Best of luck to you. Kevin Mustang1
Thank you both for taking the time to share your experiences, much appreciated. That all sounds mostly positive, I suppose the challenging social situations are a small price to pay for "slaying the beast", especially as given my current circumstances social situations are none existent at the mo! Think this would be a much easier decision if my hearing was mostly gone on my affected side, starting to think this disease just likes screwing with your mind - the day after I made the appointment the hearing on my right side "popped" back better than it has been for months. Interesting insight about the uneven terrain too, one thing I've been missing terribly is hiking with my dogs, great to think I might be able to fold that into my rehab. Hadn't considered that a CROS system might actually make loud environments more overwhelming so useful to know cheers!
Keepin mind he vestibular nerve section (VNS) surgery has the same effect as the laby, yet also preserves the hearing in that ear. It’s a little more invasive than the laby but may be worth the question to your surgeon.
Interestingly the VNS has never been presented to me as an option. I do have a couple of questions I wanted to ask the surgeon before the surgery so will broach the subject with him. That said, whilst my hearing has popped back a bit recently it's definitely deteriorating year on year. In my most recent audiograms the audiologist said the hearing loss on my right side was severe. My hearing does fluctuate and I'd say at the time of the audiogram it was probably about average, not my worst day nor my best. So I'm wondering if the increased risks of the VNS to preserve hearing that's diminished and will possibly be lost in time anyway might be the reason it wasn't suggested. Worth a query though - although time is short now, have pre-op assessment on Weds!
Cheers for the responses. Unfortunately I've had to postpone the laby. My surgeon is worried that recent additional/changing symptoms may indicate that I've developed vestibular migraines on top of the menieres and wants to investigate that before the op as he is now not as confident that the laby will eliminate the vertigo.