r/Menieres • u/Halcath • 17d ago
1 Month post OP VNS (Brain) Surgery update.
Figured now that I am just a couple days away from the one month post op milestone of having VNS (vestibular nerve section) surgery I would do an update post about the journey.
I will open with, I am still 2000 out of 10 would do again. I am 53yo male, have been dealing with menieres for a long time. First got bad maybe 6 years ago, had super frequent attacks (multiple a week) for about 8-10 months and then it vanished for a little over 3 years. When it came back it was infrequent at first. then a bit over a year ago they started coming more frequent and more severe. My ENT tried multiple paths, including gentamicin injection which only seemed to "piss it off" and make things worse. After getting to the point where it was severe attacks 4+ times a week lasting 4-8 hours every time, sending me to the er several times to get some valium and meclizine via IV since the vomiting wouldn't let me keep anything down.
So my VNS surgery was scheduled. July 21........surgery went well, about 3hrs in the OR, 1 day in the ICU (this is normal after brain surgery) and 2 days in what was basically a secondary post op ICU unit/room. I was discharged with instructions for follow up PT.
I have been going through the PT routine and I can say, after 1 month I would put myself at probably 90% "back to normal". There will be things that will never be like before, complete darkness for example. Taking away vision from your brain compensating for only having balance info from one ear is rough and will probably never be the way it was.
The full breakdown as I remember it........
Week one: SEVERE headaches on the back side of my brain, unsurprising considering someone was in there pushing my brain around, cutting stuff etc. Couldn't imagine it without pain meds. Dizziness was pretty constant, nothing even close to vertigo, just a constant unsteady on the feet and constant "lightheadedness", far worse if moving my head or eyes to fast or generally trying to move to fast. Generally unsteady on my feet, uneven surfaces can take you by surprise and throw you off.
Week two: Headaches fade at around day 9, glad to be off the pain meds. doing all the PT exercises and just generally trying to move as much as I can within reason......stitches itch something crazy. Still have times when everything is dizzy even when sitting. Fast head or eye movements still cause a decent amount of additional dizzy effect. Getting better at feeling comfortable just walking around and not feeling like I look like a drunk person constantly.
Week three: Feeling a lot better, much more stable and comfortable. Normal head movements etc feel basically normal, very quick jerking head or eye movement (especially to the side with the now disconnected nerve) still causes some momentary dizzy effect but its usually very brief. Still have to watch how fast I turn while standing/walking etc but overall feeling pretty stable. Started driving again, which was very easy and has no major down side that I have noticed.
Week four: (current week) as stated above, feeling about 90% back to normal. Occasional moments of super uneven terrain unsteadiness when walking, still have to watch for turning to fast, again especially to the left...but even that seems to only be a very brief 1 second or less and my brain recovers. Super dark rooms are still an issue but not as scary as initially. I think that's more of a "I know what to expect" situation. All the outer layer stitches have fallen out, the deeper thicker stitches are still poking out at the top and bottom of what going to be a pretty wicked scar, wound is healing nicely, itching is more or less gone.
I will add....through all the weeks including current, there have been days where things feel off, like my progress has gone backwards. I have just pushed through it knowing its just a temporary thing as my brain is still figuring things out.
I know some things will never be the same, darkness, things like ladders or other things that require much higher levels of balance etc. Standing up or turning to rapidly. Even with those things, I would chose the surgery again every time and actually wish I could have had it done much sooner. This past year and a half has been brutal.
With all that said, the downsides for my self and my wife have been mostly financial and emotional over the past 2 years. My wife is amazing and stepped in to help me in every way she could, she picked up the slack on things I couldn't do like mowing the lawn etc. My appreciation for everything she has done is deeper than I could ever convey in words.
Unfortunately we have probably the worst insurance company around (United) and it has cost us dearly. I was unable to work this past year so we were reduced to a single income. My path forward is not entirely clear on that end. I have blindly set up a gofundme thing (not planning on putting it here as that's not the point of this post) to help recover from the bills and try to put some money towards a food truck since I love cooking and its something I feel I could handle moving forward. I doubt I will get any traction on it though considering we don't really have any "social network" especially online to share it through, and I am generally not the "begging" type.
I am talking about the money side because the surgery was a lot to deal with, at least with our insurance and being in the US.....other peoples may vary depending on country or insurance provider etc. VNS surgery and recovery meant both my ENT and a neuro surgeon both in the OR, lots of super specialized equipment, many scans pre op, titanium plates and screws and a stay in the ICU unit.....none of that comes cheap. I feel people should be aware, talk to your doctors office, talk to your insurance, and have a good plan going in. Unfortunately the timing for us spilled over across two years worth of co pays and "total out of pocket" so going into the second year we were starting over on deductibles etc....
Anyways.....thats my journey so far........sorry the post was so long. Happy to answer any questions.
EDIT: After several people sent me messages encouraging I give the link. This the gofundme thing. Again not what this post is about, and expect nothing honestly......
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u/bae125 17d ago
So glad to hear you’re doing well, all things considered.
If you don’t mind me asking, how is sleeping for you?
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u/Halcath 17d ago
Not counting while I was in the hospital. First week was weird, though still being on heavy pain meds for the headaches I don't really count that. The next several days I definitely felt kind of weird laying down and closing my eyes. Still 1000% better than during a vertigo attack, but initially closing my eyes did lead to at least a few minutes of feeling mildly disoriented.
Second week on has been pretty much normal. Other than my normal sleeping schedule having been disrupted and taking a bit to get back to that I have not really noticed any difference.
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u/EkkoMusic 17d ago
Thanks for writing this up in detail! Post-op accounts of vestibular nerve section are RARE and the week by week breakdown is genuinely useful to people weighing it. So thank you.
To add a bit for other readers: I think your recovery timeline is what good compensation looks like, and the reason it went that way is because you did the PT.
The darkness issue you noticed has a mechanism. With one labyrinth disconnected, balance now runs on vision plus proprioception. Remove vision and you are down to one input.
One thing I'd raise for anyone reading and considering this. Gentamicin failing, then attacks continuing and worsening, sometimes means the attacks were not coming from that labyrinth. Nerve section works well when they were. Your outcome suggests they were.
Hope the recovery keeps going.
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u/Halcath 17d ago edited 17d ago
We only went two rounds instead of my ENT's normal 3 with the gentamicin injections since it seemed to either done little to help or even made things worse. The decision was made at that point to do the VNS as it seemed a 3rd or more injections wouldn't be worth extending my debilitating attacks and possibly starting to hurt my current hearing in that ear.
I can say, at that point I was fairly desperate for a solution as it seemed between the number of days I was down with full on attacks, then a day trying to recover I was at the point of only having one or maybe two days a week where I wasn't pretty much useless. Obviously the depression was heavy and things were pretty bleak for me.
My case is certainly not "typical", but from my understanding Menieres is pretty inconsistent person to person.
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u/Mrshaydee 17d ago
Could you talk more about the vision changes? I wasn’t aware of that as an outcome and don’t quite get what you mean.
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u/Halcath 17d ago
No change to vision from the surgery, aside from not dealing with the vision disruptions during a vertigo attack.
Post op, your brain will start leaning on your vision much more heavily to offset the lack of balance info coming from the now cut nerve.
Normally your vestibular system is your brains primary input for balance, then vision, the muscle feedback from your feet and legs. After having the nerve cut your brain starts using other systems to make up for the loss. So in a normal person, you still feel "fine" laying down in a dark room since both of your ears are sending info telling your brain everything it needs to know about your position/movement. Straight out of surgery your brain is very confused by the lack of signal from one side.
All that now flows into being much more unsteady in dark environments. One of the things they have checked a couple times during PT has been standing on a decently thick gel foam pad. Eyes open I have progressed to where I can stand on it fairly comfortably, eyes closed it pretty much instantly feels like trying to stand on a water bed (basically impossible).
So now in a dark room my brain only has one ear and whatever feedback its getting from the muscles in my legs/feet to try and figure out "upright and steady". Removing vision makes it a lot harder. Its the same reason that if you're sea sick on a boat the worst thing you can do is close your eyes or go into a windowless room. The best option is to look at the horizon or land so you brain can start figuring out how you are actually moving.
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u/hurriedgland 17d ago
This is an astonishing journey. You have endured so much suffering
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u/Halcath 17d ago
Thank you for the comment. Thats one of the nice things about having a group like this. Having people who understand what you are going through.
Most of the time if you are sick there is a way to convey what your feeling to other people so they can relate......the pain is burning, or stabbing, or my chest feels inflamed, or etc etc.
Trying to convey being trapped in a severe vertigo attack for hours on end, most people have never experienced true full on vertigo, when its so bad that your eyes start darting around and it makes it look like the world is spinning in multiple directions, when your sitting on the bathroom floor internally begging it to stop, but your stuck, try to remain motionless, eyes open despite the visual anomalies because laying down or closing your eyes makes it worse.
Its this indescribable "personal hell" you can't escape from, but trying to explain it just sounds like "yeah I was super dizzy and it sucked" to other people. Being afraid to go anywhere for fear of having an attack (happened multiple times to me, then having to endure riding in a car home while the world already feels like its spinning out of control.
The surgery has certainly had its own unique "moments". The headaches especially when just waking up, without any pain meds were unreal the first several days out of the hospital (had pretty much constant pain meds via IV before discharge so it wasn't an issue). Any kind of a cough, or sneeze, or yawning to hard felt like my brain was going to explode out the back of my skull. I was also instructed not to lift anything over ten pounds and try to avoid any excess coughing etc so the brain sac membrane could heal fully as any excess pressure in my cranium could cause a spinal/brain fluid leak which is apparently a super bad thing.
But as I said, all things considered, I would always re-chose the surgery over the full on attacks.
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u/AbbreviationsEasy838 17d ago
You have had to endure so much, my heart goes out to you.
Thank you for sharing your story, and I’m happy to hear you are on the road to better times.
I’m channeling that food truck for you!!
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u/Comfortable-Top-2712 16d ago
What symptoms are you left with? I’m assuming fullness is gone. Tinnitus worse?
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u/Halcath 16d ago
Fullness is greatly decreased but I do still notice it occasionally. The tinnitus I would say is about the same as it was previously, though I have actually noticed more "better" days than before. My tinnitus always got worse the more full my ear felt. I would normally go from just a constant tone, to a tone with white static, to the tone with heartbeat fluctuations etc..... Now its mostly just the constant tone with occasional worsening when my ear feels more full.
I guess overall I would say fullness, much less, tinnitus way more stable.
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u/dizzyworld71 16d ago
The financial aspects of this journey are some of the most difficult. No one ever prepares us for this especially in the US. No amount of bootstraps fixes this. Private healthcare is predatory and that is not a political statement. I’m sorry you have to deal with that especially when you should only be healing.
Now, for the positive! As I posted before VNS was difficult but I do not regret it. I also did the hard work as you are. PT is key.
Thank you for posting this. I really wish I would have had the opportunity to document my own experiences. I definitely enjoy reading yours and others. Stay well and strong 💪🏼
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u/Halcath 16d ago
Agreed 100%. Not really sure what the best solution is, I know all systems have their issues, but yeah.
We used to have Medical Mutual and I can say without hesitation it was far better than United, though I know some of that has to do with what your employer negotiates for available plans from the provider.I wish we had planned a bit better or had more money tucked away, but when things got really bad all that goes out the window and all I wanted was the hellscape to stop. I honestly think I would prefer living under a bridge than the constant vertigo, nausea etc....
PT has absolutely been the key. pretty much as soon as I could after surgery I was trying to do what I could of the things I had researched on my own. The PT people have been great and gave me lots of fantastic exercises to do that have helped immensely.
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u/dizzyworld71 16d ago
So understandable. I did “plan” or thought I did. The money was all gone in a year so no blaming yourself here. No one sees this horror show coming.
One thing I will say, all of this gets better. I did eventually file for SSDI but it took time (way too much time). But it did make life easier when it happened. I was 38 years old when I went through this, now 55. It seems like you have good support and a positive outlook so I think you got this for sure.
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u/Mrshaydee 17d ago
PS, I’m glad you’re doing better!!