Author Topic: Tinnitus Lecture  (Read 4349 times)

Greece Lover

  • Sr. Member
  • ****
  • Posts: 341
Tinnitus Lecture
« on: September 22, 2020, 11:11:48 am »
I don't now if anyone is interested but this lecture by Dr. Marlan Hansen I found to be pretty interesting. He's speaking to other doctors, but I learned a lot about how Docs look a tinnitus and what can and can't be done about it. Not all of it relates to AN, but some specifically does.

Maybe I'm biased since he did my surgery! But here it is:

https://www.youtube.com/watch?v=6rg8RhnKf6c

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.

notaclone13

  • Sr. Member
  • ****
  • Posts: 319
Re: Tinnitus Lecture
« Reply #1 on: September 22, 2020, 07:32:29 pm »
Thanks for the link. I plan to watch it.

judyette

  • New Member
  • *
  • Posts: 27
Re: Tinnitus Lecture
« Reply #2 on: September 25, 2020, 10:46:19 pm »
I just watched this, Thank You for the link.  I do sometimes get the pulsatile tinnitus, in addition to the constant high-pitched ringing and all the rest.  Have wondered if it was caused by the AN or something different.  Sounds like there's several possible causes besides AN. 

jaylogs

  • Administrator
  • Hero Member
  • *****
  • Posts: 836
  • It's NOT a too-mah! (Anymore!)
Re: Tinnitus Lecture
« Reply #3 on: September 30, 2020, 09:40:47 pm »
This is good info! Thanks for sharing....so the gist I got from this is...I'm doomed! LOL  Thanks again for sharing!

Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Greece Lover

  • Sr. Member
  • ****
  • Posts: 341
Re: Tinnitus Lecture
« Reply #4 on: October 01, 2020, 08:45:26 am »
Yea, it is a little bit discouraging, in the sense that the docs don't really know what causes it, and there's really nothing to do about it! But, always good to be informed.
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.

KarenJ

  • New Member
  • *
  • Posts: 8
Re: Tinnitus Lecture
« Reply #5 on: October 05, 2020, 09:27:26 am »
I just watched this lecture also.  Very informative, but yes a bit discouraging. 

My Tinnitus has become so bad I can hardly stand it.  Along with the constant, very loud, high pitched tinnitus, I started having clicking and popping and grinding sounds.  When the clicking started it sounded like someone tapping their fingernails on a hard surface. This would only happen every so often.  Then that clicking became more and more regular.  Then it progressed to a very rapid speed and sounds more like a snare drum in my head or a grinding sound, sort of.  When this happens I get very dizzy and my eyes seem to shake..If I'm driving I have to pull over.  When this started it would happen every few months and occur every few days or so.  On the days it was happening it would be all day, about every 3 to 5 seconds.  Then I would have a few months of relief from that, just hearing the normal constant high pitched tinnitus. 

But now this has progressed even more, and I've been experiencing this other tinnitus (clicking, snare drum, grinding and dizziness) on top of my regular constant high pitched tinnitus, constantly - every day, all day long.  It has been about 4 or more months now. Sometimes it slows briefly, but is always there.  I'm having problems sleeping, hearing (of course), concentrating, focusing, thinking...it's affecting my work and my quality of life now...I'm constantly dizzy, can't watch moving things like trains or cars going by, I get dizzy when driving and have to look both ways quickly before a turn, and also when that fast grinding starts.  It's driving me mad! 

I have been explaining this to the neurosurgery department for the past several years, each time I have my yearly MRI, and also to an ENT I see to have hearing checked etc... they never offer any advice on how to manage it, treat it (if possible) or deal with it.  They seem to not want to do anything at all about my tumor since it's not growing.  I've never been referred to anyone else about it, and I'm starting to think I need to find doctors in a more populated area that might have more experience with treating people with these tumors or that want to help people with these tumors.  I get the feeling they don't want to be bothered actually... I understand there are more serious tumors they have to deal with...

My Accoustic Neuroma was diagnosed about 3 years ago.  They say it is about 1.2cm x 9mm x 7mm approximately, and it hasn't grown they said.  But my symptoms are changing and getting worse. 

Just looking for help, advice etc.. how do you guys managing severe tinnitus?  And does anyone know of a better place to go for a consultation?  I live in New York State, Central NY area. 

Whew, sorry for the long post!  Thank you in advance.   

Greece Lover

  • Sr. Member
  • ****
  • Posts: 341
Re: Tinnitus Lecture
« Reply #6 on: October 05, 2020, 12:05:25 pm »
sorry to hear this. I know some people get some sort of hearing aid that shoots white noise into their ear to try to calm the tinnitus.
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.

v357139

  • Hero Member
  • *****
  • Posts: 521
Re: Tinnitus Lecture
« Reply #7 on: December 03, 2020, 07:43:17 pm »
I also have very loud tinnitus.  Somehow my mind is able to forget about it most of the time, thank God.  I believe that is why some tinnitus treatments are mental in nature.  I have a feeling that when many people are confronted with tinnitus, their first reaction is to try and control it, or run from it.  This is a natural response, the fight or flight mechanism.  Unfortunately, it only creates a chain reaction that increases stress and anxiety, and probably only makes tinnitus worse, or seem worse.

The other thing that works for me is when I am preoccupied with something else, I do not think about my tinnitus.

If it were possible for you to accept the tinnitus first, it would probably minimize the stress/anxiety, and at least it would not become worse than it actually is.  Even use "positive self-talk" from anxiety/stress programs to accept it.  I realize this is easier said than done.  But I do have loud tinnitus, and somehow I naturally forget about it without trying, and it does not bother me.

Nothing to lose by trying.  All the best.

Glad to discuss.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

bfoley

  • Jr. Member
  • **
  • Posts: 94
Re: Tinnitus Lecture
« Reply #8 on: December 04, 2020, 08:46:35 am »
I have constant tinnitus.  But I find it is less when I am taking a daily supplement of Co-Q 10.  The effect may be psychological, but I find the volume improved after 2 days of doses. If I miss a dose, it OK for 1 day, then back to an increase in volume. That is enough to remind me to get back on the supplement!  I also struggle with nausea and dizziness with movement, and take ginger capsules too. 

mwatto

  • Sr. Member
  • ****
  • Posts: 397
Re: Tinnitus Lecture
« Reply #9 on: October 21, 2021, 02:54:42 am »
Melatonin totally dampened my tinnitus to nothing. I also take boswellia and bromelain some days but every night melatonin. I just keep working on inflammation...PEA also seemed to help and magnesium.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing