Top Tips For The 'Watch & Wait' Brigade!

[keithmac]

What do you all think about eating organic and no added growth hormone dairy and meat. And taking low dose aspirin 2 times per day.  Anyone else doing this? I just had my repeat MRI in May, will have a repeat hearing test in November and if all goes well won't have another MRI til May 2015. I'll do anything if it improves my outcomes, reduces symptoms and stops tumor growth.

I can't disagree with wholesome food but I'm not yet comfortable with the low-dose Aspirin regimen.  I did read recently, though, that some medical report suggested Aspirin provides benefit and I'd consider it if there's good evidence that tumor growth is halted.

[ChrisG]

Hello Everyone,

I live in Sweden & was diagnosed with Vestibular Schwannoma yesterday. At first it only effected my balance but am now also beginning to get a continuous ringing in my ear.

I'm actually from Scotland & Swedish is tough enough without having to understand the medical terms I've been reading through some of your posts & everyone seems very postive, upbeat & brave so I hope I can take some of that good energy.

Does anyone have any tips on what information I should ask for the doctors for? It seems that asking about the size is one.

Thanks for any advice or tips.
Chris

[bethtretrault]

Chris,
Check out the tab -"Pre-Treatment" then "Questions to ask your Physicians". I just read an AA Milne quote that I love-I'm just paraphrasing here- Remember, you are braver than you believe, stronger than you look and smarter than you think. It is my new mantra! All the best!

[ChrisG]

Hi Beth,

Thanks. I'll check that out. That was a nice quote. I like that 

If you can believe it, one of the first people I talked to, apart from the family was "Uri Geller"!! I listened to him in a podacast & emailed him on his thoughts about positive thinking, etc. He replied saying he wasn't a healer or miracle worker and believed in medical science but he gave me his number & said I could give him a call which I did! I talked to him for 10 mins or so. Nice guy but unfortunately even he couldn't use the power of his mind to cure this

Thanks again & good luck to you
Chris

[bethtretrault]

Maybe you can ask Uri to focus on shrinking all ANs world wide-meanwhile I'll do the same.  :)I believe in the collective power of the human mind. Let's get rid of these things!

[keithmac]

It's a sad fact that healing has to be directly targeted at the intended recipient for it to have any chance of success.  Were it any other way then all suffering could have been eliminated long ago....

[LisaM]

Healing is a very personal journey.  At the risk of sounding too airy fairy... I feel one must create quiet and stillness to go inward to find one's own path for healing.  Meditation, exercise, playing a sport, listening to music, taking a bath.  Whatever takes you to that place.  Sometimes it works, sometimes it doesn't.  One thing that works for one person may not work for someone else.  This AN journey has certainly opened my eyes to a new way of thinking and being in touch with my mind, body and soul.

Chris...I think the significant thing to know is the size of the AN found in your head.  Sounds like it's small if they are suggesting wait and watch.  How bad are your balance symptoms?  I practice Kundalini yoga which strengthens to entire nervous system and helps with balance issues involving the vestibular nerve.  My tinnitus kicks up when I'm exposed to loud noises or silence.  I put cotton in my ears when exposed to loud noises.  In my opinion, actual earplugs are too much as they allow too much pressure to build up inside the ear.  And for silence, I sleep with a white noise machine.

Hope this helps with your introduction into the subculture of ANs!

[ChrisG]

Hi Beth. It seems Uri does not want to commit himself to any miracle cures - too much scandal possibility which I think he's already had a lot of through the years Really nice guy though & thoughtful of him to take the time.

Keith - I agree.

Lisa - thanks for the tips. I have a time with the doctor on Monday & will put a few more questions regarding size, etc. I was surprised you are checking yours so regularly! My doctor said it will be monitored "yearly" but yours seems to be much more frequently??
My balance has been bad the past 3 months since it first occured - but they only diagnosed me with VS/AN this week. I've managed to improve it by lots of walking, moving about & even jogging a little. I've also been experiencing tinnitus now which I didn't before.
I like your idea of meditation & yoga. Even it if doesn't help the AN I'm sure it has an overall good effect on your body & mind.

Thanks again to you all for the tips & positive words. It's hard to explain to someone who doesn't have it & helps to talk to those in the same boat.

[Rusty123]

Hey Derek.

I have been in W&W since Sept., 2013.  I have been off the web site for several months.  When I got back on today i wanted to see how you were doing since you, my man, are the W&W hero!

Glad you are still in w&w!  Your experience is encouraging.

Best wishes & God bless,

Russ

[Derek]

Hi there Russ...

Many thanks for your kind comments. I continue to enjoy good health with no new AN symptoms and it is now over 12 years since diagnosis when I was then aged 58 and have recently entered my 70's! I remain steadfastly committed to W&W and for 99% of the time on a day to day basis I am quite oblivious to the fact that I actually have an acoustic neuroma.

I continue to maintain my healthy lifestyle and remain totally committed in my self-belief that W&W was the correct decision for me.

I am now subject to biennial MRI scans, my next scan being due in March 2015 and I am hopeful that I will get another good result with perhaps even a further reduction in the size being recorded.

Congrats on your 1st anniversary in W&W Russ and very best wishes for your forthcoming MRI scan. Hopefully you too can remain in the W&W status ad infinitum 

Best Regards

Derek

 

[keithmac]

I hope I am as fortunate as your good self - it shows that W&W can be a valid regimen.

[MG]

I am also have been on W&W for just one year and my AN didn't increase in size. I sure hope I can follow in Dereck's and Keithmac's footsteps! It is nice to know there is hope.

Best wishes! MG

[Cindu]

Hi Derek and Lisa,

I'm 33, female. Just found to have AN last Monday. It's 1.3cm in size.

My doctor advised me to be on observation as this is what his patients has been doing (he has seen 4 AN so far, exposure in my country is minimal as my country is really small).

It frustrates me quite a bit initially as I feel I'm really too young to wait and see what will happen. The observation plan seems too passive to my liking. However, after seeing both of your posts, i found new meaning to this plan. I realize I have to be very pro active if I am firm about this plan. It's inspiring to hear about your progress and even more inspiring to hear about the changes you made to your life.

I'm now more comfortable in choosing W&W. I've just drafted a plan to make positive changes to my life eg, meditation, exercise, balanced diet, sleeping early etc. Besides these, may I know if both of you reduce your workload as well?

[ppearl214]

Hi Cindu and welcome.

You say you are from a small country and your English is wonderful. Where are you located? Sorry to hear you now join our journey......

Phyl

Hi Derek and Lisa,

I'm 33, female. Just found to have AN last Monday. It's 1.3cm in size.

My doctor advised me to be on observation as this is what his patients has been doing (he has seen 4 AN so far, exposure in my country is minimal as my country is really small).

It frustrates me quite a bit initially as I feel I'm really too young to wait and see what will happen. The observation plan seems too passive to my liking. However, after seeing both of your posts, i found new meaning to this plan. I realize I have to be very pro active if I am firm about this plan. It's inspiring to hear about your progress and even more inspiring to hear about the changes you made to your life.

I'm now more comfortable in choosing W&W. I've just drafted a plan to make positive changes to my life eg, meditation, exercise, balanced diet, sleeping early etc. Besides these, may I know if both of you reduce your workload as well?

[LisaM]

Greetings Cindu,

Diagnosis is the first step in the AN journey.  It's pretty scary but take a deep breath and try not to let it create too much anxiety for you.  I was petrified upon diagnosis and I think this is a pretty normal reaction.  If one must have a brain tumor, these are the ones to have! 

Everyone's AN journey is uniquely different.  What are your symptoms? Fill us in a bit more about how the AN was discovered. My work is freelance and unpredictable and in my 30s my workload was quite heavy and stressful.  Less so now.  I left an unhappy marriage that was very stressful just months before the AN diagnosis.

I highly recommend mantra (aka chanting) with your meditation.  The vibrations of sound are very healing.  Here's a mantra for healing:

12 minute version: https://www.youtube.com/watch?v=M0MANeYSGkQ
31 Minute version: https://www.youtube.com/watch?v=TifX6NDCPCg

And here's another 13 minute one: https://www.youtube.com/watch?v=YQrs9zlOW1U

Let me know if I can be of more support.

All the best to you,
Lisa M