I'm New...and I Have A Question About Blue Tooth Devices

[jpdamore]

Hello!

My name is Joe and I have recently been diagnosed with AN. My tumor is small (6 mm) and my symptoms include a "stuffiness" and constant, high pitched ringing in my left ear. I am an a Capella singer (avocationally) and my hearing is critical to my ability to perform. But, this may be as good as it gets. We'll see. I'm an optimist and I will continue to sing and perform until enough people tell me it's time to hang up the old vocal chords.

I have a great doctor and I feel I'm in good hands. I have faith in God and He is my rock. So, I'm going to be fine.

As a "newbie," I thought I'd join this organization and, hopefully, get some questions answered and hang out with people who understand. I read the great article on the home page about cell phone use (Cell Phones and Acoustic Neuroma). Very interesting. I always ignored stuff about cell phones and tumors. Now that I have both (a cell phone and a tumor), I figure it's time to pay attention.

I wondered if there is any information about the "Do's and Don't's" of using blue tooth devices when making calls from a cell phone. Most of the time I can use a speaker phone with my cell, but not always. I have wired connection earphones for my cell phone. I was just wondering about blue tooth devices, though. Do they put out radiation or some other kind of gremlins like these that might mess things up for my AN??

Just curious. Thanks!! 

[jaylogs]

Hi there and welcome to our little club...I am sorry you had to find us like this, but take a look around, ask questions....and you'll see we have a great group of people here.  As far the cell phone thing, a lot of talk has been generated on that, as far as whether they cause AN's or not.  I think the consensus on that is that no one has really been able to prove that they do cause AN's, one way or another.  My doctor who removed my an (Dr. Brackmann), has been practicing neurotology for decades and he has even said nothing can pinpoint a cause of these AN's....and you can definitely consider him an expert in the field.  I use a cell phone very little, yet I got an AN, so I don't know.  Something definitely triggers mass growth on the vestibulocochlear nerve, but what exactly does it, I have no idea.  Bluetooth devices uses lower power, about 1 milliwatt, compared to cell phones which can transmit at about 3 watts.  You mentioned using wired headsets, so that's even better power wise (zero!).  So the debate rages on. I am sorry I wish I could say I know for a fact what cause AN's, but that's beyond my abilities!  Again, welcome to the club! Keep posting questions and we'll try to help!
Jay

[Tod]

Hello, and again, welcome.

I'm awfully skeptical of most research until a set of findings has been replicated multiple times by different researchers using different data sets. That has not happened yet to the satisfaction of most scientists with cell phones and brain tumors. In fact, the prevalence rate that is still frequently cited in studies comes from a cadaver study of ear bones done in 1971 - well before cell phones.

Jay's advice and analysis is sound. You can also find an article on the ANA website regarding this topic and accompanying safe or best practices for those that believe it is an issue.

Full disclosure - I am not a doctor. I do policy research for a living, so I have a full set of biases regarding research in general.

Good luck on your journey,

Tod

[CHD63]

Hi Joe and welcome to this forum .....

Jay and Tod have given good answers on cell phone use vs. growth of ANs.  As with many things, the "jury is still out" on any connection.  So far there is apparently no conclusive evidence to make everyone give up using cell phones.  As for blue tooth devices ..... I certainly am not an expert, but they have to be able to communicate wirelessly ..... my admittedly limited way of thinking is that it should not be any more dangerous than radiowave transmission waves.  Hopefully someone far more knowledgeable on the subject will chime in here on that.

Just wanted to add that I, also, did a lot of a cappella singing pre-AN.  I had perfect pitch and excellent hearing in both ears up until two months before I was diagnosed with an AN, when I suddenly lost 20% of my hearing in my left ear.  This was disconcerting, to say the least.  The neurosurgeon was able to save 20% of my hearing in that ear, but alas, it is almost a quarter of a tone higher in pitch.  In the process I lost my perfect pitch and for many weeks post-op all music (especially pianos) sounded out of tune, until my brain compensated by largely ignoring the input from that ear.

I'm not telling you this to scare you because you may have an entirely different experience.  My tumor was over 2 cm when it was surgically removed.  With a very small tumor, you may well pursue radiotherapy for your tumor and save your hearing.  Unfortunately the tinnitus (high pitched ringing) is more likely not to go away.  Much of the time I can successfully refocus away from that high pitched ringing.  I have been able to sing in choral groups as long as I can be positioned so I can hear my own voice.

It is good that you joined this group.  There are so many people with so many different experiences, you can find answers to a great deal of your questions/concerns.

Best thoughts.

Clarice

[Kaybo]

Hi Joe!  Welcome from TEXAS!!

Although I am not a "good" singer - I have sung a capella in church (congregational) singing my whole life and therefore have a GREAT love & appreciation for that!!

As far as the cell phone stuff goes, I have said over and over that when my tumor was found...cell phones were still in boxes and I had never talked on one & I still had a "huge" tumor...go figure!

K   

[mattsmum]

hi - i too like to sing, and have found my tumour has made that more difficult. i have a moderate hearing loss in my an ear with tinnitus and hyperacusis and cannot currently sing in choir as the sound is too loud and sets off 'feedback' in the an ear. my ent asked if that went away if i put my finger in my ear - and it does! i am currently using white noise generators to try and decrease my sensitivity to sound and allow me to sing again. fingers crossed! the other option i am told is an ear plug.
best wishes,

vikki

[Jim Scott]

Hi, Joe ~

Just wanted to add my welcome to the others. 

I thought you might like to know that I sing a cappella in church (as a congregant) and being SSD hasn't seemed to make much difference.  I didn't sing very well prior to losing bilateral hearing and I don't sing very well, now.   

As for the risks of radiation from a Bluetooth device: they emit approximately 1 milliwatt, a fraction of the radiation a regular cell phone emits (up to 3 watts).  Like Tod, I'm very skeptical regarding the alleged risks of radiation from using a cell phone - but it can't hurt to be cautious.  Bottom line: I'm not a doctor or scientist but I seriously doubt that your use of a cell phone and/or a Bluetooth device has or will have any effect on your acoustic neuroma or it's possible excision.

Jim

[jaylogs]

A point of clarification for all you non techie types out there: A milliwatt is 1/1000th of a watt, so that is VERY small power transmissions!

[Larry]

Hi Joe,

I've posted a few stories on cell phones and AN's and yes, the jury is out. Interesting, one of the leading brain surgeons in Oz, uses his phone on speaker and at arms length. He said that whilst there is no verdict either way, he believes that from a safety perspective, he keeps his phone well away from his ear and that includes all sorts of devices like blutooth ones.

Please note that your hearing will not improve and only deteriorate over time until you treat it somehow at which point depending the treatment, you may lose all your hearing or maintain it at the time of treatment.

the growth size is very small so wait and watch is certainly a good option but just keep a handle on your hearing levels ver time


Laz

[jpdamore]

Thanks, everyone! Your prompt and informative responses have really helped me. I feel supported.

JoeD