Watch and Wait is Very Confusing

[Emmaline]

Hi,
I was diagnosed with an 1.2 x 1.2 x 1.4 acoustic neuroma above my left ear in August 2015, and I had a second MRI six months later with two measurements of 1.3 x 1.3. The neuro-radiologist, who had read both scans, said the difference in measurement was due to margin error and not to evidence of growth, but one of my doctors said he believed it had grown slightly.

My AN was found accidentally, because my former internist had put me on a wrong medication, which brought on a volcanic headache and subsequent MRI. At the time, I either didn't exhibit any symptoms or I wasn't aware of them. But now my left ear feels increasingly clogged and, strangely, overheated. I can't stand it, but my doctor has advised that I Watch and Wait, primarily because the surgery may cause hearing loss, and since I now can hear out of both ears he's afraid I'd be very upset if my left hearing disappeared after the surgery.

What he says makes sense, but I'm a bit concerned, because from my understanding whatever symptoms I have before surgery will remain afterwards, and things seems to be getting worse symptomatically by the day. That said, I don't know if what's happening is psychological, or real.

A week ago, I became so upset by the clogged feeling, I pushed a Q-Tip with alcohol into my left ear, which caused an even stranger sensation.

I don't know if Watch and Wait is for me, a 56-year-old woman who is terrified of both surgery and Watch & Wait, in equal measure. The WW is too suspenseful, whereas the surgery brings on thoughts of decreased IQ, facial palsy, memory and balance problems. I've basically decided against radiation.

I can't imagine my acoustic neuroma won't grow -- I don't understand why it would stop growing permanently, which some people say does happen. How often is that? Are there good studies on the subject? If it's going to stop growing for a few years and then start again, what's the point in waiting?

Does taking aspirin help stop its growth, as recent studies have indicated?

Even if it doesn't grow -- a big IF -- can't its presence still cause deafness, palsy, imbalance?

Bottom line, the situation is very confusing, and the most torturous part is I think I did it to myself, with constant cell phone use over the past fourteen years, without earbuds and the phone always held over my left ear.

[rupert]

   You are traveling on a path that everyone here goes down.  We've all been there.  Is your doctors advice good?  Yes, is it the right advice ?  Maybe.  Although some AN's have been known not to grow for long periods of time, most will.  Symptoms can certainly get worse even if you wait. 
   A couple things.  These tumors almost always cause some sort of hearing loss.  Unfortunately odds are that you will lose hearing regardless of having treatment or waiting.  Taking aspirin is up to you and your doctor but, I wouldn't count on it to do anything. If aspirin slowed or stopped growth there would be many. many happy people here.  Cell phones had nothing to do with your AN.  People had these things long before cell phones were invented. There can be a lot of misinformation out there so please do your research.  These forums provide a lot,  and if you spend some time here you can get good info.
   On a personal note, after I was diagnosed with a 2.2 X 2.6 AN I was pretty much set on surgery and was not entertaining any thoughts on Gamma Knife or Cyber knife.  After much research and thinking about my future and the possible effect of surgery I decided on Gamma knife.  It turned out to be a very good decision. My suggestion is to keep researching doctors and treatments and definitely get several second opinions.  And remember, better outcomes tend to happen more with the most experienced doctors.  Good luck to you.

[Emmaline]

Hi,
I appreciate both your and Rupert's response and suggestions, and will look over the studies on this site; however, I have done some research and there do seem to be excellent studies on the correlation, if not causation, between cell phone use and acoustic neuromas (http://ije.oxfordjournals.org/content/42/3/792). I realize acoustic neuromas have been around before this latest technology, but they seem to be on an increase; perhaps some people are more vulnerable than others.

Yes, I have top surgeons who are acoustic neuroma specialists, whom I trust as implicitly as anyone could or should trust other people, but ultimately, as you both say, it's a personal decision.

Rupert wrote,

"Although some AN's have been known not to grow for long periods of time, most will";

I'd been under the impression, however, that some ANs PERMANENTLY stop growing, that it wasn't a matter of just "periods of time." But even if that's true, it's probably best to not focus on it because most ANs surely do grow.

Just to clarify: I have fine hearing in both ears as far as everyday living, but my two hearing tests, spaced six months apart with the same results, did show a difference between the left and right ears on extreme frequencies. As it stands now, I'm spacing my next test at a three month interval, and if there's increased loss, I'll ask for the surgery.

Stories of surgical outcomes are so varied, from "happier than ever" to "miserable dysfunction," that it's hard to base a decision on them. Yes, many people recommend Gamma and, like Rupert, are very satisfied with the results, but I don't feel comfortable with it for various reasons, which, in a small, lucky way, whittles my problem down from three to two choices.
Thanks

[ANGuy]

The link you posted states there was a possible relationship between cell phone use in the beginning of the blurb, then concludes that there was no relationship.  It also talks about acoustic neuromas and "other cancers" when AN's are not any kind of cancer.

Am I missing something?

ETA:  Okay, either the blurb is confusing or I am easily confused.  It does show some low type of increased risk of AN's with cell phone use, but that is compared to "never" users.  Who has never used a cell phone, especially in Europe where cell phones have been much more prominent for longer than the USA?  Maybe very senior citizens?  There seems to be no accounting for age and since most people who develop AN's do so before becoming senior citizens, I think the whole study is a bit too much to be taken at face value.

We are all free to believe what we want, but the whole matter of various types of electro-magnetic fields etc causing cancer has been debunked time and time again for over a century.  People have been trying to prove that electrical fields cause health issues since the beginning of the electrical age and there doesn't seem to be any consensus that it causes any problems.

[Emmaline]

I'm neither a doctor nor electrical engineer, but common-sense-wise if you have an electromagnetic field -- so no ionizing radiation -- pressed for years and years directly upon your ear, it's not a big leap to think that those radioactive waves could cause some kind of mutation, especially if you have either a previous aberration or vulnerability: for example, I had repeated dental bitewing X-rays as a child and past studies have shown a link between ANs and dental X-rays. It's too much of a coincidence, in my case, that the AN developed on my left side, which I used exclusively with my cell, both because I'm a lefty and my right shoulder's in perpetual pain.

For decades people refused to accept a link between lung cancer and cigarettes, claiming they knew of ancients who smoked for years. There are exceptions to everything.

I don't understand your comment regarding the "never users," especially when the study said ANs increased with duration of use.

[ANGuy]

I'm neither a doctor nor electrical engineer, but common-sense-wise if you have an electromagnetic field -- so no ionizing radiation -- pressed for years and years directly upon your ear, it's not a big leap to think that those radioactive waves could cause DNA mutations, especially if you have either a previous aberration or vulnerability: for example, I had repeated dental bitewing X-rays as a child and past studies have shown a link between ANs and dental X-rays. It's too much of a coincidence, in my case, that the AN developed on my left side, which I used exclusively with my cell, both because I'm a lefty and my right shoulder's in perpetual pain.

For decades people refused to accept a link between lung cancer and cigarettes, claiming they knew of ancients who smoked for years. There are exceptions to everything.

I don't understand your comment regarding the "never users," especially when the study said ANs increased with duration of use.

Never users is a term in the blurb.  What it means I don't know.

As far as comparing Xrays to elctromagnetic fields, there is no comparison.  In terms of radiation, you are exposed to so much sub atomic particles passing through you every moment of your life it would make you dizzy just thinking about it. 

Like I said, we are free to believe what we want.  Believe that your cell phone caused your AN.  That cell phone is but a fraction of the magnetic fields you've been exposed to all of your life.  Every electronic device in your world emits such fields, including the radio in your car, the power window motor, the alternator, your refrigerator, your microwave, the fluorescent lights in your office and home, the cathode ray tube you grew up watching and worked in front of as an adult...

FWIW, I talk exclusively on my right side and my AN is on the left...

[PaulW]

There is a very small statistical link between cell phone usage and Acoustic Neuromas.
The latest theory is that if you use a cell phone you are probably financially better off than others.
You are also more likely to detect hearing loss because you won't be able to hear your phone properly.
We know that wealthier better educated people will seek medical attention sooner.

So while there is a link between cell phones and Acoustic Neuromas, it is theorised is not from radiation but from the people selected for the study...

A business executive with a mobile phone pressed to his ear all day is far more likely to go to the doctor for hearing loss because he can't hear his phone, versus say a factory worker also with an AN going deaf.. This disparity creates the association between mobile phone usage and AN

[Emmaline]

Hi,
I'm not sure how replies work here, because there was only one button to press, not single buttons for each commentator. To ANGuy: Yes, you're right, X-rays and electromagnetic fields are like water and oil, but I brought up those childhood X-rays to show how they might've made me more vulnerable to an electromagnetic field, which, as you say -- I'll take your word here -- can be found in radios, fluorescent lights, refrigerators, and so on. The big difference is that none of those things is directly touching my body for hours upon hours, day after day; I was practically glued to my phone.

It is interesting that your AN is on the opposite side of your cell-ear, so, sure, I can be wrong; but I know what I did, whereas I can't be sure of what you did, such as your hours of phone use or how exclusively you spoke on your right side.

To PaulW: that's an interesting theory -- hadn't heard it -- but I think many European AN studies refer to a wide demographic, particularly because cell phones were developed in Scandinavia and, I read, over 50% of Swedish households have been owners for at least 15 years.

I may be wrong -- it wouldn't be the first time -- but it's still something to consider. For years, cigarette companies paid researchers to claim tobacco caused no harm, and so I have to wonder who's funding many of the studies that claim the same for cell phones.

Bottom line is that my AN is here to stay, and even though it's been six months, I'm still in shock. Thanks for your replies.

[CHD63]

Hi Emmaline .....

Jumping in here to say, you are doing all of the right things to research as much as you can.  In most cases, what caused our ANs is probably a total unknown.  In my case, I had massive doses of radium to my nasopharyngeal area following a tonsillectomy as a child, but my AN was not diagnosed until decades later.  Major studies have now shown that ionizing radiation is the only proven connection in forming an AN.

Regarding cell phone use, there are significant studies looking at long-term effects.  The problem is we do not have long enough studies yet to make a confident result either way.  In my case, I only occasionally used a cell phone before my diagnosis and admittedly I limit using it for extended conversations now.  I also have an air-tube headset to use.

My doctors feel certain my AN was connected to the huge exposure as a kid, which, incidentally also predisposes me to a higher risk of thyroid cancer and other types of brain tumors.  I refuse to worry about this because the worrying could rob me of enjoying life.

Unfortunately we cannot undo any exposures from the past, but we can certainly take precautions to the best of our knowledge going forward.

Many thoughts and prayers.

Clarice

[Sheryl]

Interesting thread!!  I never used a cell phone until about 7 years ago and yet my brain stem schwannoma was discovered incidentally 14-1/2 years ago and I'm still on W&W with minimal, if any, growth.  Wonder how many of these types of tumors have been sitting in heads way before the person used a cell phone?  We'll never know but meanwhile I do worry about our son who only uses a cell phone (and constantly) - gave up his landline.  I try to limit my exposure to dental x-rays, chest x-rays, CT scans, etc.  At the airport I opt for a "pat down" even though they tell me there is no radiation exposure.  If that is so, how come there's a large x-ray warning on the booth? 
Sheryl

[ANGuy]

Those airport scanners are DANGEROUS!  They have been shown to be out of calibration, and the company that bribed their way into supplying them was caught many times lying about the radiation exposure.  This was all exposed back when people cared about things like that.  Now, nothing seems to make a splash in the news, even terror attacks, but I digress...

Those scanners were a fraud from day one, not in the concept of checking for bombs etc, but the fact that the company that makes them hired the former US Attorney General to lobby Congress to buy them despite the obvious faults.  It was your classic Washington scam where they hire a former official to take all of these clowns out to lunch and pass money under the table and walah! it all gets approved.

[ANGuy]

Women and Caucasian may have to do with utilization of health care.  Caucasian societies tend to have higher incomes and more opportunities to access health care. 

Women may be more likely to go to a Dr when having a problem.  I spent 8 years having an occasional, maybe 5 or 6 over the years, attack of vomiting and  dizziness that would subside after a day or two.  I wrote it off to having a hangover and when I stopped drinking I figured it was a stomach bug.  I think a lot of women would have more wisely seen a Dr long before I did.  My tumor hasn't grown since my diagnoses, and I haven't had an attack, so if I had blown off going to a Dr one more time, I could potentially have gone decades without knowing about my AN. 

How many people never find out they have an AN by the time they get run over by a car or have a heart attack?  Poverty stricken communities could be filled with AN's (and no cell phones) and nobody would ever know unless they did an autopsy.

There are countries where the annual per capita income is less than $700.00 and the life expectancy is less than 50 years, is anybody in that country going to know if they have an AN?

[Emmaline]

Hi,
I'm certainly glad I joined this forum a few days ago, because I've learned a lot: I never knew about air-tube headphones until Clarice mentioned them, or about Sheryl's "pat down" alternative to airport scanners, which I had believed to be safe, or about Cityview's Dr. Claus' Yale study, or ANGuy's ethnographic interpretation of research studies.

I think my problem is I'm focused on this tumor at the expense of everything else, which is why I'm finding Watch & Wait so difficult. It's so suspenseful, and in a different way than anticipating an annual mammogram. I suppose that's because most 50-plus women have mammograms so that they've become "normalized"; breast surgery is also less risky than AN surgery, being "outside" the body, not near the brainstem.

Gamma and CyberKnife frighten me even more than surgery because of a possible secondary cancer, or malignancy. I haven't read the studies on either, but I know they haven't been around long enough for conclusive opinions, even if it's been twenty years. Still, almost everyone I've read about who's had radiation for their ANs seems very pleased. It's a difficult decision.

[Emmaline]

Hi Cityview,
You're on the mark about radiation, especially when it comes to suspense; as you say, radiation might cause anxiety for the rest of one's life, worrying about delayed side effects, but like you, I haven't closed my mind to it entirely.

The confusion lies in the fact that medicine is not a science, but an art, and there are no definite answers. On the one hand, I think that at 56-years-old I still have a bit of time before surgery becomes too risky, so why have it when I can still hear out of my left ear and while my tumor is stable; on the other hand, I think "do it now" before it becomes too big and too intertwined with various nerves -- why wait, especially when its presence alone, even without growth, can cause deafness. And then I go back and forth debating the pros and cons ad-nauseam.
It wasn't until I joined here that I learned that most people think deafness is a given with an AN, whether you operate or not. I had thought that wasn't true, that surgery allowed hearing preservation and that some ANs will never cause deafness regardless of size, but I seem to be in the minority on that.
I also had been under the impression that AN surgery, when performed by a competent surgeon, isn't such a big deal if the tumor is relatively small, but, again, I see others here have a different perspective. 
Finally, I don't understand whether ANs stop growing only for periods of time, or if they can stop growing permanently & forever. Again, more ambiguity.
Best,
Emmaline

[Director]

Cityview- I don't think we can say that AN's affect white people and women more frequently. Dr. Claus and I discussed this and she told me that it is true, as ANGuy says, that these populations are more likely to seek medical intervention for symptoms, participate in medical research studies, etc.
Allison Feldman, ANA CEO