Shakey Mo's thread of misery

Also, cutting back on salt seems to make a difference.

another day of this bullshit

MRI appointment at 12:30 today

Good luck. Hopefully this will yield at least some useful information about what's going on.

^^^

thinking of u Shakey!

http://youtu.be/F_fmIQI-Y3o

grr

https://www.youtube.com/watch?v=F_fmIQI-Y3o

well that was weird

?

The MRI?

yeah they put my head in a tube for 20 minutes and then things spin around you and make really loud beeping sounds

Came across a couple of things that I hope will help:
http://www.vavsoft.com/Tinnitus_Tamer.html

Also, apparently head/neck position, particularly when sleeping, can affect/cause tinnitus (the 8th cranial nerve, or so I'm told). A visit to a chiropractor may help (and theoretically, the MRI would have caught this).

Wishing you the best of luck!

another hearing test yesterday. results same as the first, my hearing is fine all the way up to 8,000 Hz (which is the highest level they test for). saw psych on Tuesday as well, dude basically said I don't appear to have any issues apart from the tinnitus, which I seem to be dealing with as well as possible and said I could continue on my sleep med regimen with no problem. still waiting for MRI results... at this point feeling pretty despondent/cursed that I seem to have this thing that has no identifiable cause. just makes me feel like I'm crazy. 85% of tinnitus cases are accompanied by hearing loss, so I'm in that weird 15% range - but it also hasn't been caused by a head injury or infection or blockage so wtf. my fear is that the MRI will turn up either nothing or something terrible, and not relishing the prospect of either result.

god I'm so sick of this

fuck. they want me to get a follow-up MRI.

1. There is a question of a 6 mm mass at the right pontomedullary
junction. Further evaluation with contrast is recommended with
thin cut axial and coronal sequences at the level of the pons and
medulla. A repeat axial T2 fiesta sequence centered slightly
lower than on the current examination may also be helpful.
2. Mild mucosal sinus disease noted.

This could be good, though, right? It could and probably will be a totally fixable problem. And you won't have to feel like you're crazy anymore.

yeah at least they've maybe found 'something'? which is some kinda progress I guess?

ps - the only word that stands out in that is 'fiesta' :)

I don't know what to make of this news tbh. there are a lot of qualifiers in the e-mail from my doctor that accompanied this news (that they aren't certain it's anything, usually they're benign and no treatment is required/recommended, he doesn't say whether or not this is a likely cause of my tinnitus)

its very frustrating. and I'm freaked out, of course

that's a pretty understandable reaction

ps - the only word that stands out in that is 'fiesta' :)

Probably the least expected/appropriate word to be used in a medical diagnosis.

Really hope these findings represent progress (in the form of treatment, and eradication of tinnitus.)

The FIESTA (fast imaging employing steady-state acquisition) ultrafast pulse sequence provides high-resolution images with outstanding image contrast and high signal-to-noise ratio relative to the single-shot fast spin-echo (SSFSE) sequence. The purpose of this article is to illustrate the utility of the FIESTA sequence in oncologic imaging.

got the follow-up MRI scheduled for monday so at least there were no delays there. not really looking forward to dealing with neurology dept, altho at least my wife has lots of experience with them.

in a weird way I just feel like, somewhat angrily, going about my normal business as much as I can cuz what can I even do with this information, nothing really.

well that sorta seems like the only thing you can do. stressing yourself out isn't going to help you know any more than what you know now. but I totally sympathize, like how do u get to that place of not worrying, easier said than done, I know.

Wow, that's interesting. Amazing they didn't image the cerebellopontine angles and IAC's in detail the first time, given that tinnitus is your only complaint. About the only thing they could hope to find would be an acoustic neuroma or other small mass lesion there. Hope they're not charging you for the second scan.

Is the tinnitus right sided? Contact with nearby structures can sometimes sensitize an otherwise normally functioning cranial nerve. The commonest example of that is trigeminal neuralgia, in which the sensory nerve to the face starts to produce excruciating neuralgic pain without sensory loss or other dysfunction, usually because a blood vessel is resting against the nerve. The contact is enough to trigger hyperactivation of the nerve (and thus pain) but not to compress it and produce neuropathy (loss of function). By analogy I guess you could have neuralgic-type overactivity of the vestibulocochlear nerve, which exits at the ponto-medullary junction, producing tinnitus without hearing loss. I've never heard of that, but IANAENT.

If they end up blaming the nodule for your symptoms it should be treatable. Skull base surgery is a big deal in general but there are minimally invasive techniques available for trigeminal neuralgia at least. You'd need a subspecialist neurosurgeon or ENT.

Again by analogy to TGN, treatment for neuralgic pain might help your symptoms. Tegretol is usually first line, but gabapentin or other anticonvulsants might help. If I was your neuro, knowing what you've been through, I'd be willing to try if your symptoms are on the same side as the nodule. No guarantee it would help but might do.

oddly, the tinnitus is actually in my left ear

(really appreciate the additional perspective btw)

I feel like I am sorta back where I started with this - there is no explanation for why I have tinnitus, and as such my brain will either become habituated to it at some point (not yet, unfortunately), or it will go away. which is not really all that encouraging in my current state but wtf can I do.

My theory shot down by actual facts! Sigh. Probably would've just made your ENT roll his/her eyes anyway.

The tiny nodule doesn't sound dangerous, in and of itself. MRI often finds tiny incidental flaws in otherwise healthy people. Like news anchors complaining that their pancake makeup looks terrible now that everyone has HDTV, sometimes a little less detail would be nice.

The good news about a normal (or unremarkable, which is the best we can hope for given the likelihood of finding at least one tiny flaws) MRI is that there's no evidence that your symptoms are part of a progressive or permanent disease/condition. As long as everything looks normal, there can be hope that it'll eventually go back to working normally as well.

Fingers crossed for you.

yeah the odds seem low that whatever is there - if it is there at all - is related to my tinnitus. in which case they'll probably say eh we don't know what it is but don't worry about it.

tbh this is a familiar position for me. this is not the first time I have had a major, yet entirely inexplicable, health crisis (this would actually be the third). I should be used to not having an explanation for things by now, I guess.

stay strong shakey. i'm of the belief that more information is good, though it can be very unsettling to do the learning.

a couple years ago I abruptly contracted this which was totally alarming/debilitating. no one knew why I got it, and it took a few weeks to properly diagnose it. no cure/medicine for it apart from some meds to control the pain and swelling symptoms. and gradually it just went away, after about a year. why did I get it? who the fuck knows.

blimey.

Shakey, good luck with your Monday scan.

I developed tinnitus a couple of years ago, along with some hearing loss in the left ear. I always thought it was rock n'roll related, but diagnostic tests (including MRI) said, apparently, nay; that it was likely a viral infection back in the day that caused some damage to the ear nerve, and left the little follicles on permanent vibrate mode. My ENT gave me a slip of paper with the official, Latin name for my condition, but I forget what it was. On the one hand I was glad to hear it wasn't part of some progressive disease; on the other, I was told there was nothing to be done. So I'm working on getting used to the thousand high-pitched crickets I hear constantly... I had a car accident at age 20 that messed up my ulnar nerve and set up an unpleasant kind of electric buzzing feeling in my left hand... so I have some practice with something of the ilk, which has helped, but still...

Anyhow, I wish you the best.

fuck you tinnitus

follow-up MRI today

good luck Shakey

my worst fear is that they tell me the MRI shows me something that a) is the cause of my tinnitus (like nerve damage or something) and b) cannot be treated

best case scenario is, I guess, that they don't find anything significant and still have no explanation for the tinnitus. I'm kind of past the point where I expect them to find anything they actually can treat.

fingers crossed, dude.

not to be suzy-glass-half-full but there's also option c which is that they find something and can address it. <3

If they end up blaming the nodule for your symptoms it should be treatable.

this is what I'm really concerned about - how likely is this

I guess it's not really likely - the full text from my ENT is below:

your MRI shows a normal exam for the left side - there is no mass/tumor or other lesion on or near the nerves of hearing on the left side.

Incidentally, a possible small mass was seen on the right side. Masses in this area are commonly benign. The radiologist recommends another more detailed MRI focusing on this area to better evaluate and confirm this finding.

A mild amount of allergies/mucosal inflammation was noted in your nose and sinuses.

I will go ahead and order the recommended MRI for you. I have also copied the conclusion of the MRI report for you below. If the new MRI does show a small mass on the left side, we can reach out to our neurology/neurosurgery doctors for advice, but most often, these lesions are monitored (usually be checking another MRI in 6 or more months), and often no intervention is recommended unless they are growing.

good luck, Shakey!

on a different note - bluegrass does not seem to be very popular on filesharing sites, unfortunately. if anybody has a bunch of shit they could, say, dropbox to me, that would be much appreciated

talked to my ENT again...

sinus symptoms – mild inflammation, likely not the cause of this type of tinnitus but who knows. Recommends Flonase (once or twice a day) + Oceanspray (throughout the day) which should reduce inflammation after a month.
MRI results – possible mass is not in an area related to hearing on the left side. Left side does not show any growths or damage. Neurologist input recommended in case there is anything being missed or there is some underlying problem. Main issue will be if mass is growing, which will require a follow-up in 6 mos. Is possible mass, if it’s there at all, has been there since birth or for years. If mass requires treatment, options are surgery and radiation, both of which require serious consideration of pros/cons.
Tinnitus in general – in cases where no direct cause is discernible, resolution varies widely. previous patient had it for roughly a year, over the course of which it diminished and faded, although was eventually accompanied by hearing loss. Follow-up hearing test recommended in 3-6 months

so yeah. off to the radiologist again in an hour or so

Good luck, bro.

Bee Gees today

god second MRI was so annoying, had to wait an hour in the waiting room. on the plus side, when it was done the radiologist said he'd taken the scan from three different angles and didn't see anything.

I'm sorry there's no magic wand I could wave nor an obvious & treatable physical issue your doctors could take care of for you.

But at least you have the Bee Gees.

I am trying very hard to maintain a positive attitude about the lack of a diagnosable cause, and that if I can just learn to cope with this it will get better/go away. trying to focus on the excitement of new babby, rather than my bullshit, even tho I am reminded of it every second of every day

new babby is a good thing to focus on

I'm gonna get through this goddammit

you can do it

the Bee Gees and Dolly and bluegrass will help you! and new babby!