Author Topic: Greetings Everyone. New member with a few questions...  (Read 6832 times)

ANSydney

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Re: Greetings Everyone. New member with a few questions...
« Reply #15 on: September 15, 2019, 09:55:30 pm »
My neurosurgeon said that if it doesn't grow, there's no need to do anything.

mistasteve

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Re: Greetings Everyone. New member with a few questions...
« Reply #16 on: September 16, 2019, 07:47:33 am »
I got a second opinion and the other surgeon said the same thing. Everybody's situation is different, but I would say the combination of barely being able to hear in that ear, plus increasingly bad tinnitus, brought me over to the 'no useful hearing' position in my case.

Greece Lover

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Re: Greetings Everyone. New member with a few questions...
« Reply #17 on: September 16, 2019, 09:16:09 am »
Sharky (and all),

I think the first answer to my question (about why many doctors don't do mid-fossa) was on the right track: when small, not everyone opts for mid fossa.  I think it also is in some ways a little trickier, because they have to elevate part of the brain out of the way (maybe they do that for retro sig, I'm not sure).  The numbers I was quoted were not that different on facial nerve outcomes for mid fossa than others. 

Where I had my surgery, Iowa City, they specialize also in Cochlear implants, which means they do a lot of mid fossa work, I think. 
All decisions entail different types of risk.  my understanding is that with W&W or some type of radiation, there is still risk, if not eventual likelihood, of hearing loss.  With surgery, you incur initial risk with the chance for better long term outcome with regard to hearing.  I had some facial paralysis a few days after surgery, but it went away quickly.  That's the risk I took and I'm glad I did, but others obviously make different calculations.  For what its worth, Mid fossa also has much lower rates of headache problems after surgery. 

the "hero surgeon" point is an interesting one. I'd not thought about that before.  But I think it does suggest the importance of a doc/surgeon who deals with these things a lot. 

Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

Enri

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Re: Greetings Everyone. New member with a few questions...
« Reply #18 on: September 17, 2019, 09:04:30 am »
I had only 50% word recognition in the affected ear.  My doctor agreed with me that it was worth preserving so we opted for retrosigmoid rather than translab.  I do not remember where I saw it or heard it, but I recall something about the tumor affecting the chemistry of the nerve even if it does not grow.
----
Diagnosed Oct. 2015 - mild tinnitus, partial hearing loss - Right ear
1.5 cm x 0.8cm
Retrosigmoid Nov 2016 - Houston Methodist - Drs. Vrabec and Britz

lryan42

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Re: Greetings Everyone. New member with a few questions...
« Reply #19 on: September 17, 2019, 11:03:01 am »
Hey redleg,

Welcome.  It sounds like others have got your questions covered - just thought I'd add my experience with noise sensitivity.

I have had some really strange and evolving noise sensitivity.  For the first 6 months of my hearing loss (which started years after my imbalance first showed up), high frequency noises sounded very strange - almost painful.  That has subsided a bit (now I just can't hear them at all; lol).  Then, for a couple of months late last year I had some episodes of sound-induced nystagmus.  Dogs barking loudly inside a confined area would make my eyes jump.  That was not awesome.  My tinnitus during this time was also changing - I had some high frequency and then added some low frequency, then developed an addition of a pulsatile  type tinnitus.

I'm still W&W due to my particular situation but one thing that's been true for me in the 3+ years I've had this is that the symptoms tend to change.  I haven't noticed a diet characteristic myself, but I'll pay attention to that going forward.

Good luck!
Liam
2017 - Mild vestibular symptoms. misdiagnosed. Normal hearing.
2018 - MRI w/o contrast: ambiguous. Normal hearing.
2019 - MRI /w contrast: 5mm x 4mm x 3mm AN.  Moderate hearing loss.
2020 - Completely SSD.
2022 - 6x4x4 mm with 3mm extension into cochlea and semicircular canals.  Surgery UCSD + CI.

redleg25

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Re: Greetings Everyone. New member with a few questions...
« Reply #20 on: September 17, 2019, 01:21:32 pm »
Hi Liam,

Oh, I still have a million questions.  I guess I just need to be patient until my second opinion.  The problem is that it takes months (at least for me) to get into see these doctors, so waiting is hard. 

I've never even heard of low frequency tinnitus, as mine is very high pitched, similar to a dog whistle.  What is high and low together like? Is it two competing sounds?  I definitely had never heard of pulsatile.  I had to Google it.  That sounds awful!! Is it actually a rhythmic?  That must be really tough to tune out. 

Would you say you're comfortable in W&W?  What I mean is, is living with this current range of symptoms preferable to the risks associated with various treatment options? 

lryan42

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Re: Greetings Everyone. New member with a few questions...
« Reply #21 on: September 20, 2019, 11:10:30 am »
Hey redleg.

I totally get that "million questions" thing.  When I was first definitively diagnosed with an AN I really indulged my "researcher" aspect and went super deep into everything I could read.  I've had consults with man, many of the specialists in the US who are mentioned on this site.  In total I've seen more than a half-dozen different neurotologists at as many different clinics.  They almost universally agree, which has really helped settle on my course of action.  I do think a more normal person would be just fine with a couple consults in most cases.

As for my tinnitus -

It's sort of layered: there's an ever-present very high pitch "eeeeee" which I think is pretty common for us.  In addition, then there's a pretty loud "whoosh" in time with my heartbeat: like my own personal sonogram.  Sometimes there's a really nasty "siren" type effect - like a "waaahhh" on the leading edge of the pulse.  I read somewhere that pulsatile tinnitus is sometimes actually audible to others, and had an ENT try to listen to it with a stethoscope.  One looked at me like I had two heads and was then blown away when she said she thinks she could hear it.  She brought in a couple other residents who tried; a few said they think they can hear it and others couldn't.  Good times.  Beyond those two types, there's also an intermittent low tone which comes and goes.

All in all, it's pretty freaking annoying.  I listen to a lot of music to try and drown it out.  A couple of ENTs have suggested that a cochlear implant, should I be a candidate when it's time, may be effective in reducing the tinnitus.  However, since my AN is in a rare spot, few people have ever dealt with more than a handful ANs inside the vestibule, so I get a lot of "I really can't predict" answers.

That said: yeah I'm very comfortable in W&W status right now.  Nobody is willing to give me any reassurance that the vestibular symptoms I experience or the tinnitus will improve with treatment, and they are universally certain that, for me, any treatment will completely deafen me on that side: the cochlea is simply too close to my tumor to survive treatment (this applies to both the various radiosurgery and traditional surgical options).  Beyond that, though, my own research shows that "doing nothing" has by far the best long term outcomes in terms of hearing preservation, which is my main focus.  My AN is outside the IAC and relatively distant from the facial nerve so the usual AN concerns about pressure on the brain or facial nerve symptoms aren't on the radar (fingers crossed).  So, for me the plan is to continue to wait & scan and should the AN eventually take out the hearing such that there's no audiological downside I'll probably get it removed and something like a BAHA or CI inserted.

One final thing: I was pretty freaked out and depressed when this all went down last year.  I'm much, much better mentally now.  I think any of these major medical adventures tend to be shocking, but with time we get pretty good at adaptation.

Hope that's helpful and good luck with your AN.

Liam

2017 - Mild vestibular symptoms. misdiagnosed. Normal hearing.
2018 - MRI w/o contrast: ambiguous. Normal hearing.
2019 - MRI /w contrast: 5mm x 4mm x 3mm AN.  Moderate hearing loss.
2020 - Completely SSD.
2022 - 6x4x4 mm with 3mm extension into cochlea and semicircular canals.  Surgery UCSD + CI.