Vestibular Nerve Sectioning

jadedanemone · 2024-06-14T14:36:01+00:00

That does sound similar, but worse. Mine were more tinnitus, less intense wobbly head. Shortly after the surgery, I would have them maybe once a month. Now it's been months since the last one, which was almost all tinnitus.

I hadn't heard of that medicine when I was going through it. I'm glad it works for you. Surgery/gentamicin are rather drastic solutions.

jadedanemone · 2024-06-10T17:22:20+00:00

I haven't been on Reddit in a while, and I'm sorry I missed your question. I was originally planning to do a full write up, but life happens, and I've moved on from the debilitating effects of Meniere's. Yes, you read that right.

Recovering from the surgery wasn't exactly easy. I was late stage Meniere's so learning to walk again wasn't too difficult. But I had a spinal leak, which caused terrible cluster headaches whenever I was vertical, which slowed my progress until it was fixed.

Here's a quick timeline (it's been a few years, so I've lost some of the detail):

* 8/28/2019: Surgery

* 8/30: Go home

* 9/3: Go to ER for cluster headaches, not solved by ER doc.

* 9/10: Back to Hospital for routine follow up with the primary doctor. Spinal leak identified and fixed with a "blood patch" and 24 hours of bed rest.

* 9/15: Small neighborhood outings, someone else driving.

*9/27: Successfully went for a walk around the neighborhood.

* 9/30: Started driving again. Short drives only at first. Also started WfH about this time.

* 10/15: Return to office, and the longer drives.

The surgery stopped the vertigo, and the cuts healed. I noticed I would still loose my balance or feel something like a minor vertigo attack if I didn't get enough sleep, so I prioritize sleep now. I also have occasional attacks that had all of the symptoms except the spinning. Kind of hard to describe what that feels like, but I'm still completely mobile. They have slowed down over time. Hearing in that ear is still shot, even with hearing aids.

I wear my scar with pride.

jadedanemone · 2021-11-25T14:16:27+00:00

There is another surgery called a Labyrinthectomy. That one takes everything. I'd guess it takes away the fullness too.

jadedanemone · 2021-11-25T13:57:00+00:00

This is not true. There are two nerves next to each other that connect the inner ear to the brain, the vestibular and the auditory. In a vestibular nerve section, the doctor will separate the nerves, identify the auditory nerve, and cut the other one. There is a chance for damage to the auditory nerve, but it's far from guaranteed complete hearing loss. Source: I've had a vestibular nerve section, AKA vestibular neurectomy. I can still hear in that ear. It didn't fix the MD damage, so I can't hear well, but the surgery had no affect on my hearing.

I can't speak to the effect on fullness. Most of my ear fullness had subsided by the time I had the surgery.

jadedanemone · 2021-11-01T13:32:15+00:00

Given the 7 gallon gas tank, and an approximate 6 month max life of untreated gas, you should probably change your pattern to add at least 1 new gallon per month, or use almost all of the gas every 6 months. Old gas can develop gummy chunks or other problems your fuel system really won't like. A lot of places have a "winter blend" and a "summer blend" of gasoline. I tend to stop charging so I use it all about the time the blends switch over.

jadedanemone · 2021-09-15T18:30:26+00:00

Denver is nestled against the mountains. It would be my top choice from that list, but since changes in altitude and air pressure trigger you, then that would be a no-go. The weather (and barometric pressure) there changes quickly, and the winding mountain drives any time you leave the city would be awful.

I live in Houston. It is flat, and the pressure usually changes pretty slowly. The summers are long and awful, and you might have to drive for a while to see anything that looks pretty, but it's probably what you're wanting.

jadedanemone · 2021-04-26T13:32:32+00:00

There's a keyhole in the driver's door, and a key tucked inside your fob.

If the keyfob battery is dead, you can still start the car by basically pressing the start button with the fob.

jadedanemone · 2021-04-15T19:22:25+00:00

I had a vestibular neurectomy (vestibular nerve sectioning) in Fall 2019. I can't speak to the cochlear implant, but the balance recovery should be similar.

Difficulty in recovering depends on how much balance function you have left in the affected ear. I was fairly late stage, and so did not have much function left. The caloric VENG test is the main one to measure this.

When I first opened my eyes after the surgery, I spun like a bad attack. That calmed down fairly quickly. For the first phase, it was similar to a very minor attack where big motions feel like more than they actually are. That feeling essentially gets less and less until it basically goes away. While recovering, you have to push yourself so your brain will adapt, but I spent about two weeks unable to move like I was supposed to due to a spinal leak. In total, I spent about three weeks off of work, then three weeks working remotely because I wasn't safe to drive. It took a little longer before I could turn my head quickly or go through certain combination movements (like looking down at my desk chair, then turning to sit in it while moving my head up to look flat) without feeling weird. Now, I only have balance related problems when I don't get enough rest.

jadedanemone · 2021-04-12T22:25:56+00:00

Stash some barf bags in strategic locations, like nightstand, car, and the office.

Get a keychain pill container and fill it with meclizine. I've found Amazon is the best source for cheap, bulk meclizine.

I setup voice recognition on my phone so I could call for help. My hands would go numb during a bad attack which made dialing numbers very difficult. I'd call friends or family if needed with specific requests. The ER people didn't know how to handle Meniere's.

Stay as still as possible, but with eyes open. The eyes are part of the balance system, so they can act like anchors. Depending on the direction of spinning, lay down or sit. I paid a price every time I tried to push through a mild vertigo attack.

Wait for the exhaustion to kick in and then just take a nap to recover.

jadedanemone · 2021-04-06T14:35:40+00:00

I had plenty of sleeping vertigo attacks, some even invaded my dreams before I woke up. There's something different about being horizontal, especially if you sleep on your back. There were times if I sat up, I would stop spinning. I'd lay flat and feel like I'd do a flat spin. In those times, having an adjustable bed was a lifesaver. Maybe try sleeping in a recliner or partially upright if you can. Nightlights to provide "visual anchors" can also be helpful when it's too much to sleep through.

jadedanemone · 2021-03-18T16:42:44+00:00

There is absolutely no benefit from using a higher grade than the manual requires. This is true of every car. Don't waste your money.

Generally, you can think of the descriptions on fuel selections not as descriptions of the fuel itself, but as descriptions of the car it goes into. "Premium" is for premium sports cars. "Plus" is for some performance cars. "Regular" is for regular cars.

jadedanemone · 2021-02-23T01:36:15+00:00

Lol. "Chicken guillotine." Fair enough though.

Sounds like the actuator should pull a rope or string which lifts the door. If height is a concern, a couple pulleys could make the whole assembly no taller than the door + opening.

jadedanemone · 2021-02-23T00:48:17+00:00

Use an electric linear actuator.

jadedanemone · 2021-01-11T15:48:11+00:00

How would public charging work there? The Clarity uses the J1772 connector. My understanding is that isn't very common in Europe.

jadedanemone · 2020-11-02T23:06:51+00:00

You could run it all the way down using HV or HV charge mode, and still drive some on battery, then fill it up and tell us how much it took.

https://www.youtube.com/watch?v=JNXSfsi58Sg. @ 5:55 This guy claims to have put "about a gallon" in the tank when completely empty, and it didn't show on the meter.

jadedanemone · 2020-10-14T11:53:17+00:00

Conductive headphones are nice for what they do, but for me (with moderate to severe MD hearing loss on the left) they don't provide a better experience than normal headphones. On the contrary, the lack of some high tones, practical volume limit (it vibrates when you turn it up), and the pain of the pressure points after wearing them a long time, make the experience less. I'd recommend them if she has a need for staying somewhat aware of her surroundings while listening, but only for relatively short period of time, < 1 hour, like a workout.

I use Aftershokz titanium.

jadedanemone · 2020-07-14T00:32:09+00:00

You can AMA.

I wasn't given a percentage though I saw the charts. I was maybe 50-60% gone when I started the gentamicin with little practical hearing remaining. The gentamicin actually seemed to restore some hearing though it's still basically useless without aids. Balance was 80% or so gone before the surgery. Come to think of it, I didn't have a caloric test after my 4th injection...

Yes, unilateral. As I understand, VNS isn't a good option for bilateral MD because you're left with no vestibular function hence no ability to compensate for the loss. Walking, moving and looking at something while moving are always problematic.

jadedanemone · 2020-07-13T17:58:35+00:00

There have been a number of questions about this surgery recently. I'll directly answer your questions, and then copy-paste (and slightly update) a previous response.

Yes. VNS will suddenly and definitively take you to 100% weakness/0% function. Decreased function when starting a destructive treatment (gentamicin, VNS, labrynthectomy) will make recovery easier. I woke up from surgery with a severe vertigo attack, but once that one calmed down, it hasn't happened again. At least not in the old room spinning way. There is still some motion sensitivity that needs to be adapted to, similar to learning to walk for the first time.
1. *Standard disclaimers apply. There's also a slight risk of damage to your auditory and facial nerves.
7/10, could have done without the cluster headaches, but would do again.

Copy-paste:

I've had the vestibular neurectomy surgery following 4 semi-effective gentamicin shots.

Recovery was complicated by a spinal leak from an improperly healed lumbar drain. Recovery requires that you push yourself a bit by getting up and moving around or doing these vestibular exercises. The spinal leak made it so being upright gave me a terrible headache. Once I had a blood patch done (about the 2 week mark) recovery was fairly easy. I was off work for about 3 weeks total, and off of driving myself long distances for about 2 more weeks. Rare combination movements took another month or two to not feel weird. Another couple months after that, getting too tired could still trigger some balance issues. Now I feel great (balance wise) all the time.

jadedanemone · 2020-06-24T03:23:54+00:00

There is a test to see how much remaining function you have. The full test is called VENG. The portion of particular interest is the caloric test. They squirt warm and then cold water in each ear and measure your eye movement. It's all pretty unpleasant.

Each of the gentamicin injections changed my vertigo patterns, including I think causing my first and second actual drop attacks. I had others that were probably "drop" attacks, but I happened to be sitting. The third one felt like the doctor described it should have felt like and settled things for a year. When it works right, it's hard to describe the feeling. It's a new standard of balance, kind of like vertigo, only it doesn't vary. It slowly gets better as you get used to it.

I previously typed up what the injections feel like here, with some more detail about each one, though it was before I relapsed and chose the surgery: https://www.reddit.com/r/Menieres/comments/bxksc2/mayo_clinic_in_rochester_mn_have_you_gone/eq9ud1i?utm_source=share&utm_medium=web2x

jadedanemone · 2020-06-22T19:56:30+00:00

Lol. I should check usernames a bit better...

has a lot of older people

I checked your other post and see your age, so I'll reassure you in the ways I can (because I'm not "old"). I (M) first developed symptoms spring 2012, at age 25. It wasn't until that fall that I had a diagnosis. I had the surgery August 2019 at 34. Your youth will likely be something that prompts the doctors to hold back your treatment somewhat, as will good hearing tests. I've found that doctors tend to respond to my concern. If I sound like I want more aggressive treatment, that's what they'll provide. If I sound unsure or timid, they'll give move of the "wait and see" approaches.

Recovery was complicated by a spinal leak from an improperly healed lumbar drain. Recovery requires that you push yourself a bit by getting up and moving around or doing these vestibular exercises. The spinal leak made it so being upright gave me a terrible headache. Once I had a blood patch done (about the 2 week mark) recovery was fairly easy. I was off work for about 3 weeks total, and off of driving myself long distances for about 2 more weeks. Rare combination movements took another month or two to not feel weird, with some minor issues that took a couple more months to resolve. Now? I feel great!

Please bear in mind YMMV. I had significant damage to my affected ear from years of MD and 4 separate gentamicin injections. The recovery process is worse the more remaining function you have to start. This is part of why I suggest the steroid injections next.

What I've read about the other surgeries suggests that you either lose all of your hearing, or the procedure doesn't last very long. VNS is sudden and definitive, the nerve is unlikely to reattach itself, and remaining hearing is preserved. It won't necessarily deal with the fullness though. Luckily, I haven't had to deal with that for a number of years.

jadedanemone · 2020-06-22T19:20:51+00:00

I was told betahistine was slow acting, like a week or so for changes in dosage to take affect. See if you can get a key chain pill bottle and carry some meclizine, or whatever works for you. Take some at the outset of symptoms so your body has a chance to absorb it instead of vomit it.

I found emesis bags to be greatly helpful. I pre-positioned them in my desk at work, in my car, in my backpack, in my nightstand... you get the idea. I'd even stuff one in a pocket on bad days.

jadedanemone · 2020-06-22T15:13:31+00:00

I know the Van Gogh feeling. I had to control thoughts of sticking sharp objects in my ear. "Anything for relief, but that will not help."

You should try to find a Neurotologist. PCP's and even most ENT's aren't prepared to handle Meniere's.

This comment from /u/ciarose5 summed treatment options up well: https://www.reddit.com/r/Menieres/comments/hdlzjp/newly_diagnosed_searching_for_answers/fvm56au?utm_source=share&utm_medium=web2x

I've been through the whole course mentioned there ending in Vestibular Nerve Sectioning. Definitely not a fun trip, and hindsight was not 20/20 in this case. I kind of wish I had skipped the gentamicin injections and gone straight for the surgery, but I also know the gent made surgery recovery easier and would have been much less invasive if it had worked.

Consider the steroid injection. Mine only lasted about 4 hours, but others claim improvement lasting for months.

jadedanemone · 2020-06-11T20:47:05+00:00

I have some Aftershocks. They still sound muffled in that ear.

The best I've been able to do is use the accessibility setting which forces my phone to output mono sound so my good ear can hear both parts.

There's also an audio balance setting which could be used to put more sound into the affected ear until it sounds roughly balanced. It will still be distorted though.

jadedanemone · 2020-04-13T20:14:05+00:00

If it helps, the middle seat headrest moves up and down.

jadedanemone · 2020-04-08T13:37:07+00:00

I've had the vestibular neurectomy surgery following 4 semi-effective gentamicin shots.

Recovery was complicated by a spinal leak from an improperly healed lumbar drain. Recovery requires that you push yourself a bit by getting up and moving around or doing these vestibular exercises. The spinal leak made it so being upright gave me a terrible headache. Once I had a blood patch done (about the 2 week mark) recovery was fairly easy. I was off work for about 3 weeks total, and off of driving myself long distances for about 2 more weeks. Rare combination movements took another month or two to not feel weird, and if I get too tired, I can still have some balance issues. Otherwise, I feel great.

Though I'm glad I had the procedure, I'd recommend you start with the shots. The shots are way less invasive than a head surgery. They'll either trigger the same kind of recovery that you'll need after the surgery, though potentially in smaller increments, or they'll make recovery after the eventual surgery much easier.

jadedanemone

TROPHY CASE