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......