ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Emmaline on March 19, 2016, 03:37:18 am
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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.
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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.
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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
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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.
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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.
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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...
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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
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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.
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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
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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
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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.
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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?
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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.
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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
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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
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Hi Cityview,
Is it possible to buy a medical insurance that covers doctors from every state in the USA? I didn't know that was an option at any price. Does it have to do with out-of-network coverage, which I thought was still geographically limited? Can anyone -- individuals, families -- buy such an insurance? I'm very happy with my neurosurgeon and otolaryngologist, and I'm sure I'll stay with them in any case, but it's still interesting that insurance like that exists.
I too am confused regarding surgery at this point, with most of my hearing intact but my tumor still small and, therefore, more easily removed: on the one hand, I'm told that there's a 60% to 80% chance my hearing can be preserved; on the other hand, that there's no hope, with all my hearing gone whether surgery's done now or in the future.
Here's a brand new and interesting article on cell phones and tumors: http://www.odwyerpr.com/story/public/6568/2016-03-23/cellphones-are-potential-cancer-risk-heres-why.html
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Hi Cityview,
Is it possible to buy a medical insurance that covers doctors from every state in the USA? I didn't know that was a possibility at any price. Does it have to do with out-of-network coverage, which I thought was still geographically limited? Can anyone -- individuals, families -- buy such an insurance? I'm very happy with my neurosurgeon and otolaryngologist, and I'm sure I'll stay with them in any case, but it's still interesting that insurance like that exists.
I'm too am confused as to whether surgery at this point, with most of my hearing still intact, will preserve what's still here: on the one hand, I'm told that there's a 60% to 80% chance my hearing can be preserved; on the other hand, that there's no hope, with all my hearing gone whether surgery's done now or in the future.
Here's a brand new and interesting article on cell phones and tumors: http://www.odwyerpr.com/story/public/6568/2016-03-23/cellphones-are-potential-cancer-risk-heres-why.html
You do realize that the article you linked is written by someone who has no credentials and has done no research in this field? It would be like if I wrote an article showing that milk causes hair loss. It's this kind of junk science that has resulted in the deaths of people around the world when they stop vaccinating their children.
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Hi ANGuy,
I don't think the article is comparable to "junk science that has resulted in the deaths of people around the world when they stop vaccinating their children": in the first place, the author is advocating caution-in-use, not a blanket rejection of a proven medical procedure; in the second, limiting cell phone use would not result in harmful health effects, whereas renouncing vaccines would.
With regard to your statement, "You do realize that the article you linked is written by someone who has no credentials and has done no research in this field": The article's author appears to be a journalist specializing in modern technology, though I haven't investigated his formal credentials. In any event, as a journalist, his job is to interview and quote experts in the field, which he's done, not be one himself.
As you wrote in an earlier reply, "Believe what you want." I'll add my own two-cents here: "To each his or her own."
Finally, you're right, in that there's no established scientific truth yet regarding causation between cell phone use and tumors, but caution seems to be the word of the day.
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I disagree regarding the dangers of lay people passing themselves off online as experts. It circumvents the scientific process. I am not talking about you and your opinions, I'm talking about people like the author of the article you linked.
FWIW, he lists his credentials at the end of the article and via a link under his name in the heading of the article. I have copied and pasted them here:
"Lloyd Burrell
Lloyd Burrell is the founder of ElectricSense.com. His website offers solutions to the growing number of people whose health is being compromised by exposure to wireless and similar technologies."
Curious, I navigated a bit farther and found the "about" section for LLoyd on his website. This is where he should list his background, and all he does is talk about his concern for "electrical sensitivity" as he calls it. He also suggests that the increase in childhood obesity is due to cell phone usage...
To his credit, he does mention that he receives income from the sales of items designed to protect you from the effects of EMF's through his website.
Read it for your self here:
http://www.electricsense.com/about/ (http://www.electricsense.com/about/)
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Hi,
Thank you for the link. You wrote: I disagree regarding the dangers of lay people passing themselves off online as experts. It circumvents the scientific process.
The facts, however, are the opposite. Lloyd Burrell, the article's author, makes his amateur status explicitly clear in the link you provided:
Electricsense.com is not my job, it’s my passion. Most things on the site I do myself but some things are above my head technically [...] What you read on this website is my own opinion, speaking as someone who has gone through the trials and tribulations of electrical sensitivity. All of my recommendations are based solely on my own evaluation.
Additionally, almost all scientific articles in general magazines and newspapers, including Time, The Wall Street Journal and The New York Times, are written by non-specialists who are assigned, for however long, that particular beat.
Finally, yes, Mr. Burrell does make a quick reference to obesity, which I didn't explore further, so I'm assuming he partly means that our cell phone obsession is making sedentary couch potatoes of us all. Yet, he's also pretty practical, because he acknowledges cells are here to stay, and so we ourselves should stay as safe as possible.
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Uh, he is no more a journalist than I am. I don't recall him calling himself a journalist or listing one single educational or professional credential even in the section of his website that is reserved for just that. We don't even know if this guy finished high school. Also, it is very common for scientific articles to be written by scientists, MD's etc even in non-professional journals. This guy is just a guy who is selling products, and excepting donations. His article that you linked is nothing more than a hypothesis that has been around for over a century and never gotten past the hypothesis stage despite some of the most extensive scientific research devoted to proving it as fact that has failed to do so.
It is irresponsible for him to declare, and I quote from the very first sentence of his article,
"Cellphones are hazardous because they use a low level radio frequency that modifies the tissues of the body. When held close to the head, brain tumors are a significant outcome."
This has never been shown anywhere to be true, yet he declares it as fact.
True Journalists will yes, reference studies they didn't participate in, but they will also post contradictory information when it exists. There are volumes of studies that have shown NO RELATIONSHIP yet he didn't cite any that I can see.
As for the child obesity, he does, in fact, attribute it to the EMF's emitted by the phones.
Here is an article that may be of interest refuting the whole EMF causes (fill in the blank) disease or condition:
http://skepdic.com/emf.html (http://skepdic.com/emf.html)
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Hi Cityview,
Thanks for the information. If you're buying as an individual, as opposed to a family, you're lucky that you even have the opportunity to buy a PPO, because in several states that's not possible. I'll have to investigate more, because I'd been under the impression, probably wrongly, that PPOs allow out-of-network doctors only within state, but now you're saying that doctor choice is not geographically limited, but network limited. I wonder if PPOs allow both out-of-state and out-of-network doctors to be seen. It's so convoluted, because things change all the time.
I don't see either your age or tumor size written here -- though I seem to remember from another comment that it was quite small; smaller than mine -- so if you've the luxury of Watching and Waiting, more power to you. At this point, I'm so fraught with anxiety as to whether it will grow or not that I just want it out of my ear canal. Again, who knows if early surgery will preserve hearing, but if it does, I think it's worth doing. Most things good in life involve risk!
In your case, I guess you have to make a definite decision as to what you really want to do, and then research your local doctors' expertise and track record to see whether changing insurance is worth it. Obviously, you want a team of surgeons who've done this over and over to success. As far as the money, yes, it's a lot, but it's a one-shot-deal, and then you can go back to your HMO.
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Hi ANGuy,
It seems we've become disagreeing pen pals. You wrote:
True Journalists will yes, reference studies they didn't participate in, but they will also post contradictory information when it exists. There are volumes of studies that have shown NO RELATIONSHIP yet he didn't cite any that I can see.
You make an excellent point. An objective -- professional -- journalist would have included studies with contrary results, and so Mr. Burrell certainly won't be up for a Pulitzer, but he isn't competing for one either; he's what I think most people would call an advocacy journalist, a citizen journalist, or, in our global online world, a blogger. And he's quite clear about his goals, which stem from his personal experience, so, as you rightly pointed out in an earlier comment, we can't fault him for misrepresentation.
In response to another of your comments: I don't recall him calling himself a journalist or listing one single educational or professional credential even in the section of his website that is reserved for just that. We don't even know if this guy finished high school.
Mr. Burrell graduated from London Metropolitan University in 1988.
And while credentials are important, they're no foolproof guide to the truth, because if they were we wouldn't have multiple "expert" witnesses on court cases. Plenty of credentialed professionals can be bought and sold.
I opened your second link and the article is very long, too long for me to read carefully right now; however, I did skim it and one section stood out:
It is not very likely that the average person has anything to worry about from power lines cell phones, microwave ovens, cordless phones, baby monitors, or Wi-Fi. Most of us do not get that close to power lines to be significantly affected by their EMFs. Our exposure to them, even if they are nearby, is not direct, up close, and constant.
I've specifically been referring to an "intimate" relationship with an electromagnetic field, one in which the cell phone becomes another bodily appendage. While I myself am not a scientist, I have spoken to a couple of well-respected oncologists and a professor with a PhD in environmental engineering, and while none of them has claimed that there's incontrovertible evidence linking cells to cancer/ ANs, they nevertheless concluded that such a relationship is highly probable, especially over long periods of time, up close and personal.
Finally, there are studies -- I think I put a link of one in an earlier comment -- that provide evidentiary food for thought on the topic.
Is your unquestioning belief in the harmlessness of EMFs due to your having a lot of stock in Verizon Wireless or Nokia? If so, I'm sorry to pile financial suspense on top of your Watch and Wait suspense, but you can always sell before it's too late!
Best,
Emmaline
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Hi Cityview,
I'm sorry about your kitty, but if she's worth it, so are you! It's good you have a sense of humor about it all -- great survival mechanism.
Under 1CM is so tiny, so you have time.
Best,
Emmaline
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"While I myself am not a scientist, I have spoken to a couple of well-respected oncologists and a professor with a PhD in environmental engineering, and while none of them has claimed that there's incontrovertible evidence linking cells to cancer/ ANs, they nevertheless concluded that such a relationship is highly probable, especially over long periods of time, up close and personal."
Next time you speak to them, ask them how they come to that conclusion when the NIH, Harvard and many other scientific communities have concluded the opposite. Ask them why they believe the EMF's emitted by cell phones is a problem, but the EMF's emitted by the wiring in your house is not an issue when the level of EMF's from interior wiring are higher than those from a cell phone.
What exactly ARE the medical conditions that have been shown to be caused by cell phones? You are saying that it is AN's, yet you keep referring to "cancer". AN's are not cancer, they are normal cells. Could you please put forward one study, performed by some reputable scientific entity, that shows cell phones cause acoustic neuromas?
You speak of an "intimate relationship" with cell phones. You are exposed to higher doses, for significantly more time from the wiring in your house. How on Earth would anyone be able to conclude, even IF a relationship between EMF's and AN's had been established, WHICH EMF's were the culprit? The sun bathes you in EMF's, subatomic particles from space bombard you your whole life, being indoors doesn't protect you because they actually penetrate the entire thickness of the planet! They are traveling through you and I even as you read this.
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Here is an article explaining how, among other things, the WHO has concluded, after considering 25,000 articles written on the issue, that there is no evidence to support the relationship between EMF's and health issues. The aritcle is footnoted.
http://www.emfandhealth.com/ (http://www.emfandhealth.com/)
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More:
http://www.ices-emfsafety.org/expert-reviews/ (http://www.ices-emfsafety.org/expert-reviews/)
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Hi ANGuy,
Just a quick answer before I go out: I know ANs aren't cancer, but the studies I've read have linked ANs and, perhaps, malignant gliomas to cell phones, which is why I wrote "cancer/ANs" earlier.
Here's one article: http://www.cnn.com/2015/07/28/health/cell-phones-brain-tumor-risk-berkeley/
It's still early in terms of conclusive studies: it took about 80 years -- from the beginnings of mass cigarette production -- before the Surgeon General required tobacco companies to put a warning on every pack.
Best,
Emmaline
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My AN completely filled my IAC all the way to the end. I had Cyberknife and I can still hear quite well. Lost some high frequencies but low frequencies are normal.
As for The mobile phone radiation argument..
This is the latest theory
You use a mobile phone a lot and you will notice hearing loss sooner and are more likely to be tested.
I for one first noticed my hearing loss because I couldn't hear my phone properly. I already knew about AN's and went to a doctor immediately.
https://www.ncbi.nlm.nih.gov/pubmed/24434752
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Mobile phones emit non ionising radiation... Ie it's not the right frequency or power to knock electrons out of orbit, causing unwanted chemical reactions.. Like breaking DNA
As frequencies increase radiation becomes ionising. UV-B Rays I believe is the lowest frequency to become ionising. Hence high frequency ultraviolet light causes skin cancer but visible light does not.
XRays gamma rays are all ionising and are therefore proven to be dangerous.
The photons have enough power to knock electrons out of orbit making atoms chemically active.
Mobile phones emit very little power around 0.1W what's more it's spread out in a sphere, and some will pass all the way through your head to the mobile phone tower. It should be noted that if the waves are passing through your head and making it to the mobile phone tower they are not smashing electrons in your head, causing potential problems. Mobile phones use frequencies that allow low power usage and have good penetrating power. Last week I was within a foot of a 50,000W radiation generator. I got so close to this unshielded radiation source I could feel the radiation on my legs and chest. I then gave my kids sticks so they could poke it.. and then put marshmallows on the end of the sticks to toast them... Nothing like sitting around a campfire....
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Check out Lloyd Burrel's store. He actually sells a bra that contains no wire so as to protect the user's chest from EMF. He also sells foil cloth to line rooms with to protect the occupants from EMF's. We are talking tin foil hat here folks, literally.
http://www.electricsense.com/emf-protection-store/ (http://www.electricsense.com/emf-protection-store/)
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I think it is funny that some people buy special shielding cases for their mobile phone. Sad thing is that they dont work and expose you to more radiation. Mobile phones actually negotiate their transmit power. if you have a good signal they emit very little radiation. The further you are from a tower the higher the transmit power will be. So wrap your phone in metal, and the signal gets worse... so the phone bumps up the power to compensate.
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Hi PaulW,
Mobile phones emit non ionising radiation... Ie it's not the right frequency or power to knock electrons out of orbit, causing unwanted chemical reactions.. Like breaking DNA
I realize non-ionizing radiation, the kind found in cell phones, can't move -- or remove -- an electron from an atom, but the oncologist I periodically speak with thinks it's too early to tell what kind of damage can be done when an electromagnetic field is glued to one's ear day in and day out. Who knows what other changes can be taking place on one's skin, or inside one's head. I don't know how anyone can be so sure whether cell phones are harmless or not, as they haven't been around very long at all. Again, it took eighty years and then some -- close to a century!! -- before a medical warning was issued to smokers.
BTW, your AN was very small, not even a centimeter. I didn't realize a tumor so small could fill up an IAC, or even cause symptoms. Wow! That's scary. Glad the Cyber worked out.
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The cigarette analogy is a poor one. It didn't take 80 years to determine that cigarettes caused serious health issues. They were known long before that. The surgeon general ordering a warning on packaging was a political issue, not one of science. Look at marijuana today, it is being sold BY THE GOVERNMENT of some states, the same states that ban tobacco use, and there are no warnings on the packaging. In fact, there isn't even packaging in some cases, it's sold in baked goods etc.
So, MJ smoke causes the same health issues as tobacco smoke, yet no warning. This is because of political issues, not a disagreement in the scientific community.
As to your point about how anyone can say that EMF's don't cause health issues, there have been 25 THOUSAND published articles regarding this and the best the WHO can come up with, and this was in your latest CCN story that you linked, is that MAYBE EMF's cause cancer at the same rate as PICKLED VEGETABLES! I'm not joking, that is the closest the WHO could come up with a link, pickled vegetables. Skip the kimchi and you'll be fine!
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Dear All .....
This thread is now going off track of "Watch and Wait is Very Confusing," which was the initial post. If you wish to continue discussing cell phones/radiation/etc., please start a new thread in the AN Community section.
..... back on topic now.
Thanks. Clarice
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Hi Clarice,
Good point about getting off track, so returning to the original topic: I am confused about debulking versus total tumor removal. During Watch and Wait, my hope is that the tumor will never grow and never cause hearing loss during my lifetime, which is probably a pipe dream, but I don't really know; that is, I wonder in what percentage of cases those two possibilities occur in people in their fifties. More important, if I continue with Watch and Wait and then the tumor grows in such a way that total removal becomes too risky, what are the potential downsides of debulking? For example, if part of the tumor is left, does that automatically mean I'll need radiation or that it'll continue to grow so another surgery becomes necessary? What's the probability of either happening?
Can debulking further slow the growth of this slow-growing tumor, or can it cause accelerated growth?
Essentially, what are the advantages and disadvantages of debulking the tumor?
Thanks
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Some tumors are just too big to be removed at one time. Your head would be opened up for too long and you'd be under anesthesia way too long. Debulking, almost always happens in that case and a second surgery or radiation is used to finish the job. Bear in mind, it is a common practice among many surgeons to leave a sliver of the tumor no matter what the size. It is then either just monitored or radiated. The reasoning is so that they can stay clear of the nerves with less chance of cutting them or irritating them. For a total removal they normally would cut the nerve at the source of the tumor thus much less chance of it ever growing back. However, your balance and hearing nerve although separate are almost one so, hearing is gone also. Sometimes they are able to peel the tumor off the nerve but, keep in mind that damage to the nerves may have already happened and be irreversible. Also, that the tumor is growing on the cells on the sheath of those nerves so there is still a chance of regrowth. Chances and odds of anything are anybody's guess as you know individual results may vary.
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Hi Rupert,
I'm surprised about the length of surgery being a factor, as people are under anesthesia for 12 hours at a time, but maybe you're talking about an even longer period. After Watch and Wait -- I'm assuming it'll come to an end with inevitable tumor growth -- I'm opting for surgery to avoid radiation, so it's a disconcerting to think I'll have to undergo a zapping regardless, but I guess a smaller tumor means less radiation.
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I don't think you should automatically assume you will have to have radiation after your surgery. Although it is a possibility, many of us didn't have to.
I assume each surgeon has their own risk tolerance based on the individual situation. So many factors go into it: what are the patients priorities (hearing vs facial nerve preservation vs total tumor removal), how skilled the surgeon is at taking tumors off of each nerve, how the tumor is growing on/around each nerve. In my surgery - the balance nerve was cut, not for total tumor removal, but because it's easier for your brain to re-adjust to one fully functioning balance nerve from the other side - rather than risk getting mixed signals from an impaired balance nerve (either previously from the tumor, or from surgery). So as I understand it, the only reason a sliver would be left is if the surgeon doesn't feel comfortable of their chances of fully removing the tumor without damaging the facial nerve.
Also - I know you had concerns earlier about preserving hearing, and it can be done! I had only lost about 10% of my hearing pre-op, and that same level of hearing was preserved post-op! So it is definitely a risk, but not a given that you will lose your hearing.
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Hi Michelle,
Thanks for your response: it gives hope as far as hearing preservation, though I'm still uncertain as to whether your whole tumor was removed or only part. Interesting that your doctors excised your whole balance nerve for better adjustment.
Diagnosed Dec 2012: AN right side 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Friedman/Schwartz on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!!
Did you have surgery because your tumor grew within that five-month stretch, from December to April? I ask because a tumor at 1.4cm is considered relatively small and your symptoms were minimal.
I also wonder if Watch & Wait automatically means unilateral hearing loss after 10 years or more, even if one's tumor never grows.
Thanks,
Emmaline
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My surgeons stated, and my post-op MRI confirmed that they removed my entire tumor!
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Michelle,
My bad -- I see now that the info was in your profile. Thanks.
Emmaline