New Strategy

[skipg]

I was diagnosed in the fall of 2010 and put on W&W status. Spring of 2011and had 2nd MRI and all was good. Attended the Cincy Symposium and received tons of information, support, and advice. Overall consensus was to remain W&W and have another MRI in July of 2012. Three doctors here in Norfolk agreed that was a good plan (Surgeon, CK Radiologist, and an ENT Specialist, all work together with the team approach with AN's)   In the Fall of 2012 with a strong dietary change for the better I decided on my new plan. "If you ignore it, maybe it will just go away."  I stopped posting in Sept of 2011 because this little annoyance no longer existed. All was going very well with the tinnitus and roaring being the devils I had to live with. Come mid May of 2012 I went to visit my daughter in Dallas TX. There my diet went south. Home for Memorial Day picnics and more junk food. June 3rd off to Dallas and then Erie, PA on a motorcycle trip of 3500mis and more poor eating. When I came home my daughter came to visit for a week and made pork tenderloin for our 30th anniversary bash (30 lbs of pork). Of course we had to consume the balance of the leftovers for a week. I never eat pork due to the high acidity that promotes abnormal cell growth. June 15th and 16th started feeling peculiar. Head plugged like I had a bad head cold and a wonky feeling. Ear stopped up and felt a little unsteady. What do I get in the mail  but my yearly MRI notice. Had the MRI on July 13 and on July18 ENT calls and sets up a Aug 8 consult to discuss treatment options. Tumor has grown and should be addressed. I know the address, its in my head. Did I do this to myself? Will never know. I have been back on a good diet and feel much better. Barley greens in the am along with cod liver oil. Fruit for snacks. Carrot juice 2x a day. Small vegetarian meal for supper. Whole grains at times with a lot of water. More to come as I go on this journey of life. No change in motorcycling and feel better when I am moving. Frustrated but remain hopeful.

[BlueSky]

Hi skipg,
I read your story and I think its really great you have been eating well and taking care of your body. That's something we can all aspire to do (I'm attempting to do so myself) but I don't think it is some kind of miracle cure. When reading what you wrote I wasn't like oh no he's fallen off is diet, I was instead thinking what a great time you must be having and enjoying life. You should be enjoying life as we never know what the next day is going to bring. I don't think you should be blaming yourself for the growth because we really don't know what makes these things grow and what doesn't. I think most people are going to end up in treatment and we would all like to wish our AN's away, but it is not realistic.

[lrobie]

Hey skipg,

I see you were in Erie, PA.  That's where I live.  Just got back from having my surgery at House.  I missed Roar on the Shore, but it sounds to me that you were here prior.  Anyhow, I can't say much about whether eating well keeps the AN from growing.  I think you'll hear that it works for some, but is not proven.

Take care and don't stress too much in making a decision.

Lisa

[leapyrtwins]

There are no studies that show eating has any affect on an AN, so don't beat yourself up over your diet.

Jan

[skipg]

lrobie
I hope you are coming along well and progressing smoothly.

Yes I was at Roar on The Shore. My wife & I were privileged to present a personalized Honor and Remember Flag to the family of Cpl Jarrid King, KIA in Afghanistan in January 12, 2011. The Manufactures and Business Assoc. along with Roar On The Shore sponsored this flag for the King family. TV 12 and 24 both had coverage. Jarrid was a young man from Harborcreek, graduating in 2009 from Harborcreeek High.

[lrobie]

I know who you are talking about.  I hope you enjoyed your time in Erie.  Just don't visit in the winter.  We are all hybernating!!

Lisa

[Jim Scott]

Skip ~

I'm sorry your AN has decided to grow but, like Jan (post #3) I'm not aware of any scientific studies proving a correlation between diet and AN growth but of course eating healthy is always positive.

Being blessed with a high metabolism rate, I've always eaten exactly what I wanted (in moderation, of course) and that rarely included anything considered 'healthy'.  My AN wasn't discovered until I was 63 (in 2006). The neurosurgeon believed it had been there for "at least a decade".  However, the tumor and I had a deal, of sorts.  The AN didn't produce any symptoms - and I didn't try to kill it.  Once that deal was off the table (I lost my hearing in the 'AN ear', leading to my diagnosis) I proceeded to have the tumor 'debulked', it's blood supply severed and then (90 days later) radiated (FSR).  It gave up within a year and I'm doing great today.   

I trust that your healthy eating habits and a positive attitude will combine to help you achieve a good outcome from whatever treatment you chose. 

Jim

[Mickey]

Hey Skip! I`m of a different perspective. First let me state that I`m 63 now W+W 5+ years 1cm AN "stable". When I was first diognosed I wasn`t feeling very good. Going thru all avenues that any AN patient goes thru, I met many doctors and did my homework. I got the same same diognostic results and ideas every body else gets. With the doctors I chose from the beginning I asked if I could try a something a little different for a while. It was W+W with incorporating anything possible which would help me feel  better. I got some blessings and proceeded. I looked thru all dietary foods and supplements along with exercise, power of prayer and positive thinking, etc... I noticed within 3 months I was feeling alot better and staying that way. They only real symptom I have now is tinnitus which I`ve already had for 30+ years but more tolerable now. (also did neuromonics). There is a bunch of inspiring posts here under the "Wait + Watch Brigade" you can also read. I was recently contacted to post something in the Mailbag from AN headquaters in Georgia soon. I`m hoping what I have to say will be a positive thing for all my AN friends. Whatever our choices, my prayers for a sucessful outcome. Best wishes, Mickey

[skipg]

Hi Mickey, Thanks for the prayers and best wishes. I only have a year on you, woops, as of today 2 years. Things are already feeling better. I do believe diet has some positive effect on this condition. If nothing else a lower BP most certainly causes less pressure. Couple more motorcycle trips this summer and then I will move headlong into the next stage.

Hi Jim, Lucky you. I look at food and gain weight. Mine also came out of hiding when I was 63. I wish there was a study done on healthy diet and AN's. This would be difficult to verify and what constitutes a healthy diet? For me again it is China Study, Forks Over Knives, and my favorite, The Hallelujah Diet. Here we go again on life's journey. Overall it is good to be above room temperature and charging ahead.

lrobie, I lived in Erie for many years. Had the Junction at 38th and Pine and Jet Oil at 10th and Parade. I was even a Pa State Constable for District Justice Elliott LeFaver. I went through many a snowy winter. I loved it as I always had a season pass to Peak and Peak(sp).

Leapyr and others, Thanks for the chance explain, complain, and vent. I feel much better and am forging ahead. In fact I am looking forward to Aug 8th and taking the bull (little tumor) by the horns. I will lead the way (with Gods grace and mercy). 

[skipg]

Back from consult, tumor has shown significant growth. Now 14mm and pressing into the brain and approx 2mm from the brain stem. Need to make a decision, Surgery, Gamma Knife, Cyber Knife, extended Fractionated Radio Surgery, or my most recent exploration of Proton Therapy. Decisions and more decisions. Every time you talk to one specialists it seems their way is best. I have nixed surgery. Gamma Knife seems to shoot way to much radiation at one time having the possibility of surrounding tissue damage and later swelling. Right now I am seriously looking at C Knife, extended fractionated, or Proton Therapy. More to come as I make a final decision.

[PH Miracle]

Well, this is my first time on the forum, but I really wanted to respond with the successful experience I have had with diet...I was diagnosed with my AN in 2004 and faced all the stress and choices that we are all familiar with...I chose Gamma Knife and was given a 98% chance of complete killing of the tumor.  Evidently I was in the 2% because the tumor came aggressively back, 3 years later.  Surgery seemed to be the only treatment option.  I researched other options including diet and found a plan with which I felt comfortable.  The basis of the diet is that tumors can't grow in an alkaline body environment...you keep your body alkaline by eliminating sugars, (including most fruit), red meat, yeast, dairy, and eggs, focusing mostly on green vegetables.  Fish is OK.  As you can see, this is a very restrictive diet!  Don't think I could have stayed on it if it weren't for the support of family and friends and the fact that I was highly motivated!!!  The very skeptical surgeon said he could give me 6 months to try the diet plan...after those 6 months, we were all happy to note that the tumor had stopped its aggressive growth and was stable!   So I've been on 'watch and wait' ever since.  The last MRI, to my delight, showed that the tumor is actually shrinking.  The plan that I follow is described in the book titled "The PH Miracle"...author is Robert O. Young and it is sold at Barnes and Noble, among other places.  There are many testimonials in the book concerning cancer "cures" using this diet.  I'm certainly not saying this will work for everyone, but I believe with all my heart that it has worked for me!