ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Martin Rigby on August 30, 2011, 07:07:18 pm
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Hi - I recently joined the club in Aug 2011 with a 6mm AN (MRI done in May 2011).
I like a challenge and an excuse to change my diet. My diet (4 weeks now) is loosely based on the findings in this book (China Study) and hoping for at least the status quo for my next MRI (Dec or Jan).
The diet is essientially whole food and vegetarian, althought I am eating a little meat and fish. So thats low GI generally, being NO bread, suger, cake, white rice, milk, yoghurt, beer etc. Lots of fruit, vege, nuts, beans... I cannot give up the whiskey, wine and coffee (but now without milk)
Obviously I am feeling healthier and have dropped 2cms off the waist. Some odd little fatty lumps scattered around my body are shrinking (which I think are like little tumours?) so hoping the one in my head is doing the same.
Having been checking my hearing but cannot be certain things have changed for the better or worse. Certainly the fullness feeling in the ear is not so apparent and my inner ear is regaining some sensitivity. Could be my wishfull thinking..! I am planning to get a official hearing test in another month to check if things are improving
Has anyone else out there had any success in W&W with dietry changes? Success for me equals no growth (or maybe very slow growth)
Its fantastic that the forum exists and makes all this possible, it would have been a lonley journey 10 or more years ago
Back to my carrots, "what's up doc..!"
Martin
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I read this book several years ago before AN. For those in the WW status I believe that the human body, as God designed it, is completely capable of healing itself. The problem is that very few people are willing to go to a plant based diet. It is a very difficult diet to stay on but if we would follow the course I believe that our bodies, given the proper fuel (food), would perform in almost miraculous ways. Since the AN diagnosis I have been more diligent with my diet, trying to eat more plant based foods. Will this cause my tumor to stay the same or even shrink? This is where medical science and doctors come in, by monitoring and advising of the steps to take. I will never discount or suggest that we do not go to the medical community for help. For those of us in the WW Brigade I believe healthy living can only be a positive experience. If nothing else your BP will go down, you will lose weight, you will sleep better, and your overall health will improve. Having said all this I do want to state that this dietary change is difficult. I fight it constantly and will never look down on someone that struggles and gives up. I have had good friends with medical conditions that could be reversed with changes to their diet but instead take pills or just keep on eating foods they love. Study the book, it is a good read with great suggestions but never forget our friends in the medical field that are here to help us.
Skip
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Sorry Martin, I forgot to welcome you to the club. Stick with us and let us know how you are doing.
Skip
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Hey Martin! I totally agree with what your saying and doing. There are many of our posts out there (W+W brigade) etc. with info on healthy lifestyles for a sucesssful W+W experience. Going into 5th year now "stable" and treating this naturally... Best wishes, Mickey P.S. taking care the way I have I actually feel alot better than when 1st diognosed...
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I gave up wheat and dairy in May after my diagnosis in April 2011. I also experimented with acupuncture but think the dietary change has had more of an impact on my overall health. Red wine is actually good for us ANers as it acts as a natural anti-inflammatory and a blood thinner (no dairy no wheat is essentially an anti-inflammatory diet). Don't know the the China Study book but will check it out. I'm also taking reservatrol (thanks Mickey!) which is a supplement derived from red wine grapes. Also taking tumeric which is a natural anti-inflammatory. I also stopped using a cell phone or any other electronic device on that ear.
Had a 3 month MRI in July that revealed a tumor with no growth, stable. A hearing test in late July reported stable hearing as well. 3 months is a short time. My next MRI is scheduled for January. What were the symptoms that led you to diagnosis? What size is the AN in your head? I had sudden hearing loss July 2010 that lasted 4 to 5 days and another bout in May 2011 that lasted about 5 days. First time I took nothing. Second time I took prednisone, awful stuff! The last hearing loss episode lasted only one or two minutes on June 1st. I do have that full feeling sometimes and some tinnitus that comes and goes -- which flares up with stress, fatigue or loud noise.
You should check out the thread here: http://www.anausa.org/smf/index.php?topic=3791.0 I found it to be incredibly helpful when first diagnosed. All the doctors were telling me I needed surgery ASAP and that just didn't feel right. Being in touch with others who were waiting and watching has been a tremendous help!
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Hi, Martin - and welcome ~
Thanks for your information. I'm sure it will be appreciated by many. Although holistic approaches to battling an acoustic neuroma don't always produce a satisfactory result, they are often helpful in other ways. Even when these diets don't noticeably affect the tumor, they do offer other benefits, such as weight loss and a healthier food intake than we normally have. So,I'm all for them for those who wish to pursue this approach. Your experience to date seems positive so we'll look forward to seeing how things go for you in future MRI results.
Jim
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Hi Lisa / Jim
I was diagnosed in May with a small 6mm AN, follow up MRI scheduled later this year. I do not know the other measurements and did not think to ask. My main symtoms were gradual hearing loss over about 12 months, immediately after finding this sight I also became aware that I had a feeling of fullnes in the ear with occassional ringing.
Have not convinced the family to go Vege so still eating meat. Like the idea about keeping up the red wine.
I am mainly whole food, breaky is weetbix, fruit and soy milk. Lunch is a salad with no meat, cheese or eggs, but include nuts, seeds, actually enjoying it. For dinner trying to reduce the meet and eat more vege. Have removed processed rice, pasta, all bread and suger etc
Belt size down 2 holes.
I have done a internet based hearing test every week but not seem any significant improvement in my hearing, will get a real test done in late Oct to check, I now have some usable hearing in the left ear, when at my worst I had very limited hearing on my left side.
In contrast to your experience of dramatic hearing changes mine is stable and only seems to change over months and gradually, very difficult to perceive. My first recollection of the issue was when I could no longer use a phone on my left year (my normall phone ear, incl cell phone).
There is a movie based on the book, that is good if you are keen to learn about diet and health.
http://forksoverknives.com/
Love the forum... a great place thanks for the dialogue
Martin
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Although agreeing with everyones way of maintaining a healty diet and lifestyle I must admit I am more liberal. It`s obvious whats some of the main culprits of bad health are and unknown about alot of other things. I am a firm believer in moderation in everything. Ex. A glass of wine may be good but any more may not. I also have a special place for supplements and exercise and sleep which should round out all you can be... Best wishes, Mickey
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hi...just posted in a different category....I was just diagnosed w/a Gluten Allergy...with 1 month my tinnitus has "quieted" and feels like my hearing has gotten better...Can't wait to see if the tumor size changes at the next MRI....i'm a believer in trying anything to feel better!
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Hi mzb475! How would you know if you have an gluten allergy? Sound interesting and makes sense ... Best wishes, Mickey
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I know that there's a blood test to see if one has celiac which is a autoimmune disorder of the small intestine. The only cure for celiac is to eat a gluten free diet for life. There must be some sort of test for the wheat gluten allergy. I've done a bit of reading about this gluten thing and it is interesting... Thanks for posting about this MZB475!
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I used Enterolabs...the true test is a stool test.
http://www.enterolab.com/ and you can read more.
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Great info Laura! Thanks! Were you able to get your health insurance to pay for the test?
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Yes...insurance (Anthem Blue Cross) paid for the test :)
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Hey Laura,
Just had an MRI last Wednesday. The AN is about 5mm smaller than it was last July. Stopped eating wheat and dairy last May. I've been doing quite a few other things but I think that the change in diet has been a big help. Thought you'd like to know. I have not been tested for any sort of wheat sensitivity but its on my list of things to do. Just need to find a Dr to order it so I can get insurance to pay. I'm hoping the AN will keep getting smaller and smaller... and disappear! I'll take the 5mm reduction for now...it feels miraculous from where I was last May!
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Lisa,
Did you have your MRI in the same machine and location as the others? I have heard that there can be a margin of error in measurement depending on the slice angle of the MRI. I'm trying the same diet and take Zyflamend twice a day. My tumor hadn't changed in size on the second MRI taken on the same machine. Going soon for the third MRI so we'll see if its still stable.
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Captoats... yes all MRIs done in the same facility, same machine, same technician, same radiologist. Just sent you a PM.
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Lisa,
That's great news! I also changed my diet following my diagnosis and Cyberknife. I'm almost vegan now. And I also stay away from the three whites (white flour, sugar, salt). It's funny. Right away my blood pressure normalized and I haven't even been out running since my Cyberknife treatment. My bottom number dropped from 90 to 75. An impossible feat without running every day. I have this gut feeling that an AN is a real wuss of a tumor and if you give the body what it should have it'll take care of it. Oh, I should have mentioned acupuncture twice a week, too.
Greg
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Hey Greg! Great to hear your news. In some ways getting these tumors is an extremely effective wake up call to take care of ourselves. I'm feeling better than I have in years. How is your acupuncture going? It's too bad that insurance companies don't want to pay for more of these alternative medicines. I may have just saved my insurance company $50,000 but my out of pocket cost is about $1500 for what insurance will not cover. Why they will pay for an expensive surgery but not something like acupuncture is beyond me. Hopefully some day....
Be well!
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Hi - I recently joined the club in Aug 2011 with a 6mm AN (MRI done in May 2011).
I like a challenge and an excuse to change my diet. My diet (4 weeks now) is loosely based on the findings in this book (China Study) and hoping for at least the status quo for my next MRI (Dec or Jan).
The diet is essientially whole food and vegetarian, althought I am eating a little meat and fish. So thats low GI generally, being NO bread, suger, cake, white rice, milk, yoghurt, beer etc. Lots of fruit, vege, nuts, beans... I cannot give up the whiskey, wine and coffee (but now without milk)
Obviously I am feeling healthier and have dropped 2cms off the waist. Some odd little fatty lumps scattered around my body are shrinking (which I think are like little tumours?) so hoping the one in my head is doing the same.
Having been checking my hearing but cannot be certain things have changed for the better or worse. Certainly the fullness feeling in the ear is not so apparent and my inner ear is regaining some sensitivity. Could be my wishfull thinking..! I am planning to get a official hearing test in another month to check if things are improving
Has anyone else out there had any success in W&W with dietry changes? Success for me equals no growth (or maybe very slow growth)
Its fantastic that the forum exists and makes all this possible, it would have been a lonley journey 10 or more years ago
Back to my carrots, "what's up doc..!"
Martin
I do not have an answer for the healthy way of life not there yet but had to comment about your other tumors I too have numerous ones throughout my body but was told they were lipomas and not to worry but I am wondering if there is any significant relationship between tumors?
Best Wishes,
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Lipomas are just fatty tissue and not any nerve involvement. The neuroma is nerve involved. Those with NF2 can have nerve involved ones over the body. I have NF2 but have not had any of these. Lipomas are found on a lot of people. I could see with the change in diet that they may shrink some with less fat intake. Cheryl R
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I watch this thread with much interest these days. I became aware of my second AN this past September and have had two MRIs done over a three month period. It grew 3 MM in that time. I have since scheduled a "decompression" surgery at HEI. I don't dare go for removal or radiation as I don't like the odds of retaining hearing in my only working ear with either treatment. So I will continue with W&W after the decompression.
I was also made aware of the China Study and the Forks over Knives a month or so ago. Being a staunch meat lover and used to drinking three glasses of milk each meal, I tell you it was with great skepticism I switched to a Plant Based Diet three weeks ago. I hope it will control the growth of this bug in my ear. Time will tell once the decompression surgery is done and I start with the regular MRI followups.
Some IMMEDIATE results I have noticed though are a significant drop in my BP in a matter of days. I went from a normal BP of 150/95 (while on BP meds) to 125/80 (still on BP meds for a while). I haven't had that BP in over 20 years!
I also lost 11 pounds in two weeks and saw the number 210 on the scale for the first time in those same 20 years.
I will say the two benefits I have seen so far are well worth the effort and sacrifice of this diet alone. If it controls the growth of the AN long term I may well be a vegan (much as I dislike the term) for life.
Updates to follow over time.