Experience after labyrinthectomy??

Don't let this monster drag you down. I've had all the surgeries you can get and the harsh attacks are somewhat reduced, but they did not go away. Diagnosed in 1991 by an ENT doctor and sent to Stanford University where I was treated as a mental patient. Went to California Ear Institute and found the professionals who knew exactly what I was dealing with. Sadly all the surgeries could not beat the monster. You have to do this in whatever way works for you..no standard fix. I have ran into hundreds of people in my travels who have the monster and you must deal with it on whatever level you can. This is the first time I have been back to this site in many years because I needed it. Afraid..you bet, every day of your life you have to deal with the monster the best you can and smile because you are definitely not alone. Keep dealing with it the best you can and never give up. By the way...you are not crazy..just different for some unknown reason!

 

I believe the question was about exhaustion.

Yes, you can try to do the best you can, and never give up, etc. But fatigue weighs on you, no matter your will power. No matter how many laps you swim.

I'm fatigued too Autumn. Google is helpful.

https://www.google.com/search?rlz=1C1LENN_enUS490US490&q=fatigue+after+head+surgery&oq=fatigue+after+head+surgery&gs_l=psy-ab.3..0i22i30k1l4.395652.402702.0.402979.34.31.3.0.0.0.168.3083.15j14.29.0....0...1.1.64.psy-ab..2.28.2741...0j35i39k1j0i20k1j0i67k1j0i22i10i30k1j33i160k1.RO5xdFVuTwE

 

I should add that while Google is helpful with understand fatigue. I don't know that there are any complete solutions. I guess that's stating the obvious.

I've looked into taking methamphetamine when fatigue hits especially hard but it's my understanding that there can be side effects.

 

I have heard the same stories from many post laby patients. I know there are a few people on here who had labys and report that their lives are back to normal. That's wonderful. But not everyone gets back to normal that quickly. When I was recommended a laby by one surgeon, I asked what the success rate was. He said 95%. I asked how he defined success. He said no more vertigo. I asked about other symptoms and side effects. He said there were no promises. So I started asking around, and found that it all really depends on various factors, like how much balance was left prior to surgery, etc. Lots of people reported the extreme fatigue like you're describing.

Everything is a trade-off, it seems. I hope you feel better soon!

 

I had a laby five years ago this October. My doctor told me that I would not have to have the fear vertigo or drop attacks after the surgery. He also said the "icing on the cake" is not having any of the symptoms of meniere's after the surgery but "there are no guarantees". For the most part I have been one of the lucky ones. I still experience tinnitus sometimes it is really loud but for the most part it is something I can easily live with. Over the past five years there have been maybe 3 or four times when I have felt like I was having an attack, meaning my laby ear felt full and I felt extremely tired. For me the laby has been a life saver. I hope that in time it will be for you also. Just knowing that the drop attacks are gone is a life saver. Give it time, get as much rest as you need, a healthy diet and exercise will help. Best of luck.

 

Welcome Autumninthefall!

I don't know much about labys. I haven't gone that route, but I will say that the thing that has helped me most with the fatigue is the antivirals.

I also wonder though if you have nystagmus, if you might have BPPV. That is a good problem to have because it is easily solved with the Epley Manuver.

 

Autumn, I haven't taken meth. I asked some informed people about the option and they advised against it, citing adverse side effects and possible dependence. I brought up Desoxyn with my PCF and ENT and they dismissed it out of hand. I live near a primary distribution center for methamphetamine, San Bernardino, so it would simply be a matter of walking into the right bar. But that would be illegal and I have a nagging fear of having Meniere's while in prison. I have so much to do before my VNS surgery, as I recently relocated and have piles of stuff in every room and a huge mound of stuff in the backyard. I know someone who sanded & painted 3 bedrooms in one night on meth. I just need some kind of jolt like that.

 

Yes, it would be great to just have BPPV. I get vertigo from that and also vertigo from MM and MAV. I've gotten good at figuring out which is which, and addressing whichever one is causing the problem is. For a long while it was just overwhelming. My point is that you could have multiple things going on (doesn't have to be BPPV). So maybe the laby solved some of it, but there is something else.

Lots of good wishes solving the fatigue issue! That's not fun.

 

I also had a labyrinthectomy 5 years ago. Without a doubt, my "improvement" post surgery continued for well over a year. I could do most everything 4 or 5 months after the surgery, but I think I could sense continued improvement up to year 2. Exhaustion was part of my recovery history for sure - your brain really works over time to deal with the reduction in your vestibular system.

Not sure what your exercise regimen is but....get out and walk. I'm a geologist by profession, so my job naturally get's me out a lot. Walking outdoors helps with compensation, especially for nystagmus and oscilopsia. Outdoors is the key. Keep at it and it will get better over time. 7 or 8 months post surgery, I still had a touch of oscilopsia but it eventually went away.

 

I had another surgery that destroyed the 8th nerve. During the recovery process, my doctor told me 'for reasons they didnt fully understand, this kind of surgery tends to leave people feeling tired for a long time'. I was 49 at the time i had the surgery. I walked every day as soon as i got home, with a walker, then a can, indoors then driveway, then outdoors. I went back to work (office job) half time after 7 weeks feeling pretty proud of my rate of recovery. I was not prepared for the total exhaustian i felt at the end of the first day. I remmber after three months i felt pretty good and went back to work full time. I thought i am recovered. But at the end of six months, i thought, no NOW i am recovered and again at nine months, i thought, NOW i am recovered. I kept getting more stamina and energy over a long period of time. Likewise i had a nerve injury in my face from the surgery and it kept getting better for two years. After 3 months, i asked the doctor if it was safe for me to go back to the gym and he said 'now is the time to push it'. I took that to heart and did a ton of walking and my usual gym routine. I told the nurse i thought that helped with my balance recovery. She said 'it helps with everything'. I hadnt thought about it that way but it does.

So, my advice is keep going, walk as much as you possibly can, always in a safe place away from cars etc, since you cant tell where they are coming from now. Do as much as you can safely, but stay off ladders etc, fall into bed exhausted every night and sleep 8-10 hours every night. That is what recovery was made of for me. I really did get back to normal but it took perhaps a year or longer. The very old and wise company doctor i saw before returning to work, told me to work half days at first so I wouldnt have to drive in the dark because my brain had enough adjustments to deal with as is. I think that may be the source of the fatigue after this kind of surgery, the brain just being overloaded with learning. Think of toddlers learning to walk, how they go go go then they crash and sleep sleep sleep. That is kind of how i was for some months.

Stay positive, stay qctive and get enough sleep.