I’m 4 months out for SSNHL. What would be the downside of NOT getting an MRI? I SO do not want to. My understanding is that even a positive finding would result in “watch and wait” anyway. If absolutely necessary, couldn’t I do it in 6 months instead when I’m settled a little more in this traumatic new normal? I had a drop in speech recognition in my last audiogram (which is when they suggested an MRI) but I’ve been told the difference in speech probably had to do with hearing recorded speech instead of spoken speech in the most recent test, and over the ear instead of insert headphones in the most recent test. The MRI will be $1500, and I’ve spent thousands already, it’s LOUD, and I have been through so many treatments and HA fittings - i want a break.
As someone who did have a neuroma, the risk is that you have a neuroma that’s large and faster growing. Now the actual chance of that is probably in the low single digit percentage. Mine is small, and so far hasn’t changed in 2 years (knock on wood!!). And there’s a very good chance you don’t have one at all.
So there’s probably a 95+% chance of nothing changing or happening in the next 6-12 months. The question is are you ok with that?
One other thing - have you had any balance issues. If you do then it’s a much higher likelihood of a neuroma, as that is a common side effect of it as well.
thanks - in which case they would do what? By the way, no balance issues, with some challenging yoga too.
So the short answer is either radiation or brain surgery. Both have ups and downs, but both suck. To expand a little more - a neuroma in that area is right next to the skull. There just isn’t a lot of room. If it gets too large, it presses against the brain, which can ultimately cause severe problems and/or death.
I know it sounds grim, but the two options, although they can have sucky downsides, are not fatal and are very survivable. I have a friend who had the radiation and although now deaf in that ear is otherwise perfectly fine.
on the up side - only a small number of people actually have neuromas, and only a very small number of those actually grow fast.
I was basically told by my ENT to go get it now. Thankfully I have good insurance. At this point I go to my 2 neuro docs once a year, get the mri to check growth, and knock on wood a lot
Thanks for this, and I’ll knock on wood for ya too!!! Did your friend’s radiation cause the deafness?
It caused the last of it. He had a little hearing left.
The radiation route will cut off blood flow from the tumor and so kill it. It will almost always kill the rest of the hearing though. Brain surgery has a small chance in keeping hearing, but, it’s brain surgery, so there’s that…
I had an acoustic neuroma that, when discovered, was at the high end of what is considered a small neuroma. It was found via MRI. I had Gamma Knife radiotactic surgery six years ago.
I still have some aidable hearing in the affected ear. I’m told that I am an outlier as most people lose all their hearing in the affected ear with Gamma Knife. And pretty much everyone loses all hearing in the affected ear with resection surgery.
I thought it was unnecessary to get an MRI. I was wrong. Obviously I’m glad I got it. I am one person who can be an example of someone who was diagnosed in time to still be able to retain some hearing. If I had waited longer I might not have been so lucky.
Also I was treated with what was, at the time, a brand-new model of Gamma Knife machine. I think that made a difference. Maybe as the new Gamma Knife machines gradually replace the older ones at medical facilities more AN patients will be able to retain some hearing.
Bottom line: IMO it is worth it to pay the money for the MRI because if you do have an AN, earlier detection might mean the difference between retaining some aidable hearing and total deafness in the affected ear. Good luck.
As an owner of an acoustic neuroma myself (10 yrs, 6x3 mm, watch and wait), one thing I can recommend is spending some quality time reviewing the info at the Acoustic Neuroma Association
I joined right away. They have everything you could want to know including a very welcoming forum. We’d all agree that getting a baseline MRI is valuable. You need to know exactly what you’re dealing with before catastrophizing about all sorts of procedures and outcomes. Is it big or small? Where, exactly? Or is it nothing at all? This procedure will nail that down. The only thing you can’t know instantly is how fast it might be growing, so by definition that takes at least two imaging sessions. Good luck in your journey.
There are many times you don’t want to have a test done or a procedure done for what ever reason. But I have found that when I decided to not have it done its then always in the back of my mind. Like a nagging wife. And God forbid when you then eventually do have it done they find something that could have been dealt with if you hadn’t waited. I hate having medical problems or procedures hanging over my head. So far, knock on wood, I have found getting things done is the lesser of two evils. And as time goes on I know if I had acted it would have been over by now. But still it’s what you’re comfortable with. An mri is not the end of the world.
OP here. So I had my MRI today, and it went well. I was able to wear BOTH foam earplugs and over the ear headphones (both provided), and the sounds were far from threatening. It was a long time (45min) due to with and without contrast, but I should have my answers tomorrow, and can let this whole acoustic neuroma thing go, or know what I’m dealing with and not wonder. I wanted to write here to make sure any future reader saw that this anxious guy did well, and it wasn’t nearly the nightmare I had been playing out in my head. Was it fun? Hell NO. Was it tolerable? Definitely. Thanks for all of the kindness and support here.
Good. Glad it went well and hopefully the results will be good too.
Appreciate that Hass5744!!!
Way back in October 1999 when I had one for possible Autism, they “lost” the results so I had to have another one! I wouldn’t mind but this is the British NHS, I know it has its faults but come on!
I’m glad you got the MRI. In all likelihood it will just come back normal. But it’s better to be sure.
Thanks again all - the MR was, indeed, clear. I was afraid otherwise, so now that fear is also clear
Define “normal”? Contrary to popular belief, despite being mildly Autistic, I AM “normal”.
Uhh. . . no abnormal physiology or mass?
Glad to hear the good news regarding the mri results. Figured I’d throw that in since this thread appears to be about to go off at an angle.
Lots of folks question if a colonoscopy is absolutely necessary.
Well @Morgan1946, from past experiences, a colonoscopy (Edit Should read, Cystoscope ) is most definitely unpleasant, on recollection it still brings tears to my eyes… My Urologist was also a bit of a wit, I recall laying on the bed, hospital gown on, a nurse either side of the bed, (presumably to hold my hands) awaiting the Urologist to start, he came over to the bed, shook my hand warmly, and uttered these immortal words; “Hello Mr McAuley, my name is Mr Bond, I am pleased to meet you, YOU WILL NOT BE PLEASED TO MEET ME” what an absolutely brilliant intro, but he was 110% correct… Cheers Kev