I Know But I’m Not Gonna Tell…

I know, everyone, brace yourselves. It’s an update.

I… forget completely where I was in this whole extended timeline when I last wrote and the truth is I’m a lazy ass and I’m not going back to look. I know, right? I was referred by my hurried, harried ENT to the other ENT, after a CT scan. There was some conductive hearing loss, blah, blah… Are you still dizzy and falling over and stuff? Blah blah.

And I, my friends, I do not believe these new fangled audiograms. I do not believe they will find what they think is there. I do not believe that this probably isn’t going to end as a total flustercuck. But then… then some itchy little bastard gives you hope and you start to think it sure would be nice if they are right.

I saw the new ENT last week. First… in getting the referral from my new GP (who is nice enough, but I need to switch hospital networks. This is impractical at best and worrisome at worst), the referral assistant had to ask a crapload of questions that I know that insurance and the hospital networks required her to ask but I’m even more confident violated the hell out of HIPPAA. One of the questions she asked was, “So, you mean your current ENT isn’t capable of handling this problem?” (Please read this in the snottiest tone imaginable, not with the fear and awe I thought it with when she referred me.) I really wanted this woman to call my first ENT and question her skills. I’m sure that would have gone over wonderfully.

This new ENT was a nice guy. I am glad to say he didn’t tell me I just had a raging middle ear infection, or allergies, or crap in my ear. I get worried when they tell me they have a pretty good idea what’s going on.

I am glad, that at least on the top few surface layers, this little issue is not directly related to the growth in around my pituitary and eyeballs and stuff. If it is related, it is probably in about the same way as people who have, say, knee problems occasionally also have other joints and stuff that are crappy. The bad part is they aren’t sure what causes… well, hell, anything that seems to be happening with me so it’s kind of hard for me to buy a lot of what I am told.

I seem to have a teeny hole in my skull over my semicircular canals in my left ear (or at least really thin bone) which means there is an air/fluid/vibration exchange from my inner ear into my brain. The CT that was done looked to me like it was done on a vibrating table (it was pretty poor, if you ask me) but he could tell that there was thinning, if not absence of bone, on that side. The right side looked fine.

So this can indeed explain a lot of what I experience, and it can be fixed. It is why I keep getting motion sickness in cars (sea legs more than nausea). It is why I look up when I walk and I start staggering. It is why my voice is so damn loud in my head but no one can hear me (I still think you all need to clean the crap out of your ears though.) It’s why I can’t hear the TV over my chewing. It is why the wind makes me walk all drunken monkey like. It’s why my vision bounces all over when I walk fast or run.

Maybe. This is thing. I don’t know. I don’t know as I believe that. I think it plays a role, and given how the hearing loss is new and the rest is getting more prominent, maybe it plays more of a role than I would think.

Something sure as hell is debilitating. I can’t go for extended car rides. I can’t listen to the TV too loud. Headphones are absolutely horrific. I don’t mean that it makes my ears hurt, I mean it makes my brain stop. I have said this. I said it first five years ago. I said it last three years ago, because I got really goddamn tired of being told that it was anxiety becauseĀ goddamn it, it wasn’t. But I was too tired to have the argument anymore. It couldn’t be fixed, and it is better to shut up and just deal with it, because it is draining. The balance is the biggest deal for me, and I don’t know how it might affect my fatigue or even pain levels. I suspect it does, but I don’t want to overestimate this. I just don’t know.

So, I said they can fix this, right? Yeah. Some words should not go together… like “minimally invasive” and “craniotomy.” You can pair “suck” with “craniotomy.” This is not a nice thing. It is a big deal. It is a huge deal. If my thymectomy is anything to go by (also a minimally invasive absolutely horrendous massive ordeal type of surgery), I could spend the better part of a year just recovering from the procedure. Except… this actually has a decent success rate in dealing with symptoms, where a thymectomy is not a curative thing. Especially if you have no idea why it’s enlarged.

Is any helpful outcome worth this risk? I’m inclined to say yes, even though I hate the idea of it. The thing is, this isn’t going to get any better on its own. It is possible I could go through that procedure and take the annoyingly long time to recover that I imagine it will take and just be like this. It is possible there could be complications (but they do seem to have made leaps and bounds, which is neat if still not wickedly comforting). I could only see marginal improvement.

Marginal improvement might mean I can take a car ride for an hour without being horribly ill and needing two days to recover. It might mean I can go up to the second floor of the house – and oh my god – get back down the stairs again. I mean, on my feet, not scooting down each step on my ass like I have to currently.

Also, my brain will be exposed to open air. Scares the crap out of me, and truthfully, I still have to get the annual follow up MRI of the other mass. I know it is apparently unrelated, but I can’t help but feel priorities would be there first.

Anyway, I am following up at Mass Eye and Ear in the fall. We need a better targeted image and the E-ENT was pretty hip to the idea that reading and thinking would be done prior to any decisions. It’d be an easier decision if I knew what I was experiencing — and how much of what I am experiencing — is clearly due to this. I have no quality of life. That’s it. I said it. This isn’t living. But this is still a hard thing to just say “sure, go on in.”

It says more that I’m considering it this seriously. Eeep.

This entry was posted in Langerhans Cell Histiocytosis, Not Otherwise Specified, The Bad, The Ugly. Bookmark the permalink.

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