Hello, I am new to this group and had a labyrinthectomy last week. I spent three days in the hospital and since I have been home have progressed from a walker to walking by myself in my home. Outside, I use a walker or cane for any walking other than short distances. I am working on allowing my brain to readjust to the new normal which I am unsure at this point exactly will be. Riding in a car (I obviously cannot drive right now), is tricky and walking because there is so much for my brain to see and take in and try to balance. My brain feels wonky and I go to sleep at night hoping each morning that things get a bit better and take less effort. I get dizzy but I am okay with it rather than scared because I understand my brain is making new pathways and it has to happen. Before surgery, it would usually signal a Meneires (sp) attack. I would be most grateful to hear from any of you who have had this surgery and your experience in recovering your ability to walk and drive and resume some semblance of normalcy. How long did it take for you to not feel dizzy when you walked? When could you drive? Does your brain allow for a new normal where it doesn't feel like it takes such effort to process what you see around you? What worked well for you, and what did not? What did you do to get through the first days, weeks and months? Also, I have an appointment set up in September for a hearing aid. I think it is bilateral. I have some hearing loss in my good ear in two tones, otherwise I am able to hear well. The hearing aid will transmit sound from my deaf ear to my good one. I know there are ones that can be inserted into the skin and others that you wear. Understanding that each of us is as different as can be, there may be no one size fits all. I am curious however, to hear of your experience and would be most grateful for any suggestions. I am a female, mid 50's, undergraduate student, married and plugging along. I really just have felt like I need to connect with others who understand Mennieres Disease as well as those who have gone through this procedure. I cannot express how encouraging it would be to know that I am not alone. Thank You
Hi Jvabean ! I did not have a laby but i had another surgery a little more complicated for an acoustic neuroma where the 8th nerve was destroyed causing me to lose my hearing and balance entirely in the right side, the same end result that you have. My surgery was 20 years ago and i was 49. My first week sounded much like yours. I was using a walker and then cane outdoors and kind of leaning on walls inside. My first day or two home from the hospital when i tried to take a bath i thought ‘i am in the same condition as my 80 year old mother!’ Within 2 weeks i had walked a mile out my country road with a cane. It was quite scary, when i came to a little place that was dug up, it was like climbing a mountain! But i persisted. And i was proud. I bragged to the nurse when i got my stitches out and said i thought walking helped my balance and she answered ‘it helps everything’. My advice to you is to keep walking, with whatever aid you need, a cane, a friends arm... and always in a safe place but keep walking. Be very aware that having suddenly lost the hearing in one ear, sound will always seem to come from the direction of the good ear and you may misjudge which directions car engines are approaching from and things like that. That was the hardest adjustment for me. I felt like every morning i woke up better off than i went to bed. Sleep helps a lot too. Get plenty of it. Fast forward I became quite a good bike rider after my surgery but only ride trails no raods in part because of the hearing loss. I went back to my office job in 7 weeks part time and full time after 12 weeks. I had a long commute and drove myself from the beginning. After 3 months i felt i was doing very well. After 6 months i thought i was really well. And after 9 months i was still better. Fatigue is a hallmark of this kind of surgery according to my surgeon, so be patient with regard to that. I am rambling a little but basically, what you describe seems like what i experienced. Over the years, i have had very little impact on my life from my surgery all things considered. Keep walking, keep doing what you cant do so you will be able to do it, always in a safe way. Good luck, keep us posted.
Hi Jvabean, I had the Laby 4 years ago. You will get better every day. Keep moving is best. Walk, walk and walk. I didn't go back to work for 6 weeks but everyone is different. Depend on what your job is. I was riding a horse at 8 weeks. I can do everything I use to do before this crap but I might just do it a little slower. I didn't drive until about 3 months only because I didn't feel comfortable. Looking at the computer bothered me. It took me quite awhile to not worry about having an attack. When I get tired I feel off. Not dizzy but feel like I had been spinning. I do not have a hearing aid. Hope some of this helps. Good luck and keep moving!
Thanks for posting, Jvabean. I'm having a laby this Thursday, and it helps to hear your experience and the questions you have. Another member, PleaseNoDizzy, is about a month post-laby, and she has made detailed posts each week of her recovery. Her thread is "Laby (and BAHA) tomorrow". Check it out, if you haven't already.
Yep I’m a month+ Out from my labyrinthectomy. Which reminds me I’ll do another update on the thread that Clare mentions. Everyone is different but you sound about where I was a week out.
I am a male, 52 yrs old, systems engineer, I am at about 8 weeks out from my laby and life is almost normal for me now, just slightly weird feeling occasionally when I move in a position that I don't do often. I don't think I noticed a real difference in how I felt (as far as being dizzy when moving after surgery) until about the third week, before that I was very concerned that I made a terrible mistake. There was a short time (about 2 weeks after) that I got extremely depressed about the whole thing because I didn't seem to be getting any better with the dizziness from just moving and I thought it was going to be like that for the rest of my life, but shortly after that things started to get noticeably better everyday. Truth be told, I'm still recovering, but I hardly notice any dizziness now when moving, just an odd feeling sometimes. I was working from home after 1 1/2 weeks and back to work on the 4th week, driving on the interstate and working with clients. Today I am doing whatever I want to do, I've been riding my bicycle, going out to dinner, having some drinks (beers and tequila mostly) pretty much back to normal life. I haven't been out on my motorcycle yet and probably won't until next year, but pretty much everything else and I don't worry about vertigo anymore. Ringing in my bad ear is still there but not as bad as with the MM, but the fullness and pressure are gone. I'm sure its different for everyone, but it sounds like you're right about where I was. Just give it time, keep moving and doing what you can and soon you'll be feeling a lot better. Stay well!
Thanks for sharing your experience with the ups and downs post-laby. It helps to guide expectations. My surgery is tomorrow.
Javabean, I hope you are seeing a bit of improvement since your last post. Clare, you should be on the other side by now. I hope you're doing ok and hanging in. These first 72 hours after were the pits but I promise you'll be feeling significantly better by the end of the weekend.
RWJ, helpful update as always. Appreciate how realistically your write about your recovery. You guys, me and RWJ used to hang out at the same mall when we were teenagers. Who knows, we may have battled each other at Space Invaders at the old Southwyck Mall arcade. Clare, you're way over there at Mayo. You are not alone. Trust you are well. Update us soon!
Jvabean, I hope you're feeling better now. I think the hearing aids you referred to are called CROS (can't remember what that stands for, though). I gave them a 30-day trial before returning them. They worked better for me than any of the conventional aids I tried, but my situation is a little different. I live alone and found the devices annoying in my ears so didn't bother wearing them around the house. Thus, I never got accustomed to them and they continued to be annoying on the rare social occasions when they might have been of some use. Last week I got a BAHA implant at the same time as having a labyrinthectomy. The concept of the bone-anchored device is the same as the concept of the CROS hearing aids, but the BAHA transmits sound through bone vibrations directly to the good inner ear, rather than going through the air in the ear canal as the CROS aid does. The attractive features of the BAHA for me are: 1) nothing annoying in my ear; 2) slightly better sound quality via bone over air. As you said, everyone's different. I wish you well.