Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 228618 times)

sharonov

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #165 on: July 28, 2011, 05:20:52 pm »
Healthy living is always good, so all the tips on this thread are positive and make us feel in control.  A little, anyway.

But a little voice inside me says "are you kidding?  AN aint got nothin' to do with anything you did or are doing."  I know friends who eat all the wrong foods, drink like fish, have been smoking since their early teens--and no AN.  I'd like to compare my own habits (pretty good) with other AN's, but other than this site I don't know any.  You all and I are too rare.  I guess that's a good thing-for the millions who are not in our ranks.

I just got my Consumer Reports for the month, and they have an interesting article about various illnesses, things people have used to help themselves, and the efficacy of the treatments.  Almost every illness reports a huge discrepancy between prescribed medication and things like meditation, massage, herbal supplements, etc. etc. etc.  Prescribed medication wins hands down.   I know my husband suffered from depression for years and didn't want medication, so he did all the stuff like St. John's Wort, Transendental Meditation, dietary changes, etc.--nothing worked until he began Zoloft and then there was a seachange and I stopped fantasizing about running away to a place where people had joy in their lives. 

So, I guess I'm a big Killjoy for this thread, but I have a feeling that the truth is no matter what we do our little boogers have their own agenda.  We can live like monks or *****s and they don't care but will grow or not grow at their whim.

Now I'm going to have another beer.l

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #166 on: July 29, 2011, 12:11:24 pm »
Hi 'sharonov'...

A healthy lifestyle, including alcohol in moderation and the occasional 'junk' treat, is undoubtedly going to improve your overall health and general wellbeing. With regard to whether a healthy lifestyle has any impact on the AN condition?....well you have to have a very positive attitude and lots of self-belief that this is the case otherwise you may as well just give up and await whatever fate allots you. I chose to 'watch & wait' with a very focused and positive attitude, adopted a healthy llifestyle and now approaching 10 years since diagnosis, I firmly believe that I made the right choice.

Best Regards

Derek
« Last Edit: July 29, 2011, 03:34:01 pm by Derek »
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

sharonov

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #167 on: July 29, 2011, 04:11:09 pm »
You have a good, positive attitude Derek, and that probably reflects itself in many aspects of your life.  My attitude is one of ignoring.  I do live a pretty healthy lifestyle (I just finished a beer, so I'm not a total teetoler!) have never smoked, get exercise that fits my aging body (worked with a highly regarded personal trainer and got a pulled hamstring out of it, so now I just walk alot) eat my veggies and often do TM.

And, most of all, I just forget about my little bad guy until it's time for the annual MRI, and try not to mourn my progressive hearing loss excessively.

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #168 on: July 29, 2011, 04:31:29 pm »
A healthy lifestyle, positive outlook are a couple of key ingrediants in a W+W way of life.  There is also alot of good guidlines with all the research you can put to use for your own situations. I`m a believer! 4 yrs now with my yearly mri next month. Best wishes, Mickey

dragonmama

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #169 on: November 21, 2011, 04:03:41 pm »
Just read this entire thread - thank you Derek and all for providing such positive advice and energy!

I had my first MRI in June which confirmed what the audiologist suspected from my hearing test in February. My AN is still small and I'm still meeting with various doctors, but my gut response is that W&W is the right choice for me. From February, when the audiologist first informed me of their diagnosis (severe SSD with tinnitus) and their suspicion (AN) until September when I finally met with a neurotologist and neurosurgeon, I went through agonies emotionally.

It was an awful roller-coaster, and I think what made it worse was getting the "dead man walking" look from the various health care professionals I met, combined with this insistence that I was looking at early and urgent neurosurgery. Then I met Drs Rutka and Tymianski and they are urging W&W and I felt this instant relief: finally, I've found health care professionals who are on the same page. There's no pressure to either fight for more time, or push myself to accept surgery that doesn't feel right. Whew!

I walked out of that appointment and told my kids that we have to befriend this tumor and tell it to stay cute and small and cuddly, and it can live with me forever.  ;) I try to send it loving energy every day. I am very grateful that my AN took my hearing when it did. If I wasn't already profoundly SSD, I'd be more tempted to opt for surgery. But since I'm already coping pretty well with SSD, I don't have that to fear.

I like your top 10 list Derek - and practice something similar. I figure, even if (worst case scenario), it doesn't have any affect on my AN, at the very least I'm getting myself into the very best possible health and that will be good for coping with and recovering from surgery. So it's good no matter what way you look at it.  :)

The things I do in addition to regular exercise and rest, healthy diet, drinking lots of water are:

- I take a turmeric supplement. Turmeric is an anti-inflammatory that's been shown to cross the blood-brain barrier (some oncologists use it for cancerous brain tumors). It also has the ability to induce apoptosis (cell death) in cancer cells. I know my AN is benign, but figure turmeric might have a similar effect on benign tumors.
- I take a greens+ supplement on those days when I don't get enough leafy green vegetables.
- I take an anti-oxidant.

About 6 weeks ago I added acupuncture to the above regimen. I've tried acupuncture before and have found that the best acupuncturists come from the source: are raised and trained in China. My acupuncturist says this is because they get a lot more practice while they are training than acupuncturists who train here in Canada. My acupuncturist has not given me any false promises (like shrinking my tumor or restoring my hearing), which is a thing that definitely counts in his favour in my books.

He's specifically working on: (1) supporting my immune system; (2) helping reduce my allergy symptoms (because all that extra pressure in my cranium is no fun!); (3) increasing blood circulation through my head; and (4) increasing my Qi, or inner energy.

I've noticed a lot of positive benefits since starting acupuncture. I have way more energy - haven't had this much energy in 10 years. I actually vibrate with energy and itch to get exercising, rather than dragging myself through exercise by sheer willpower. My daily headaches are gone. Instead of catching every germ my kids bring home, and being sick longer than anyone else in the family, followed by a bout of asthma, I am getting sick less often and for shorter periods of time. My balance, which seemed pretty wobbly since last Christmas, has greatly improved.

It may not be a cure for my AN, but it has greatly improved my quality of life, and for that reason alone, it's worth it to me.

Gael
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #170 on: November 22, 2011, 01:08:26 pm »
Hi Gael...

Many thanks for your kind comments relevant to the 'Top Tips' thread and for your  personal contributions pertaining to supplements / anti-oxidant and the positive health benefits that you have derived from acupuncture which will be of undoubted interest to fellow contributors.

I have perused your posts in other threads and can empathize with the personal matters which you have referred to including having to cope with two young children whilst coming to terms with your recent AN diagnosis. You present as very articulate, patient and determined in your outlook and combined with your obvious good sense of humour you have all the essential elements required for a successful 'watch & wait' journey subject of course to the usual caveat of regular MRI scans and professional medical guidance.

Best Regards

Derek

 
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

dragonmama

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #171 on: November 22, 2011, 05:04:26 pm »
Thanks for your words of welcome Derek - I feel right at home here. :)
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #172 on: January 05, 2012, 01:17:24 pm »
Greetings W&W Brigaders.

Happy New Year!  I will have my next MRI this month.  I'm a little anxious...  having increased tinnitus and wonder if it's the "marble" as I call it.  Fingers, toes and anything else I can cross that it is at least stable with no growth... and in my wildest dreams SMALLER!

All dreams come true in 2000 on two!

xxoo,
Lisa M
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #173 on: January 05, 2012, 05:03:16 pm »
Hi Lisa...

Hopefully your increased tinnitus is merely attributable to your raised anxiety relevant to the forthcoming MRI scan. We have everything crossed for you and await good news.

Best Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #174 on: January 05, 2012, 07:44:09 pm »
Hi Lisa! Good luck on your upcoming MRI... As Derek said anxiety plus a whole bunch of other factors can cause your tinnitus to fluctuate. Having mine 30+ years now,  (5 years diognosed with AN) I`ve seen so many changes its just a part of me...Wishing you the best, Mickey

Jackie

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #175 on: January 06, 2012, 11:27:09 am »
Hi Lisa,

Wishing you all the best for the most desired results of your up and coming MRI. We share your anxiety!!!

Looking forward to hearing from you!!!

Blessings,
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

chloes mema

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #176 on: January 09, 2012, 03:06:40 pm »
Very encouraging thread especially where I noticed that Derek's AN self reduced!  That's what I'm aiming for.  After reading this same thread for several days I've initiated a healthy living program for myself, taking bits and pieces from several posting.  Eat healthy, take vitamins, exercise, drink lots of water and little wine, get lots of sleep.  I believe this is going to work!   ;)

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #177 on: February 01, 2012, 10:50:39 pm »
Pinch me... am I dreaming??? Wanted to share my amazing news!

Had my MRI today and was crossing everything that the tumor was at least the same size with no growth. I didn't dare wish for it being smaller.

I was standing in the office discussing my bill with the payments lady when the tall dark and handsome Dr. (Radiologist) came in and said, "Lisa I have to ask you what have you been doing? I'm not supposed to tell you anything but really thought you should know, the tumor looks smaller. I've never seen this before. How did you do it?" I jumped into his arms and cried I love you!  ... tears of joy streaming down my face!

 I don't know any details regarding size so I'm hoping that this is all true and not some kind of crazy fantasy.  I will see my Dr. at House next week for the full report but right now I am elated and beaming!

Love, love love!
Lisa M
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #178 on: February 02, 2012, 04:42:59 am »
Hi Lisa...

Fantastic news for you...and us! Stability is always great but any indication of a reduction is astonishing. Do let us know all the facts when you get your full report.

Best Regards

Derek
« Last Edit: February 02, 2012, 04:22:52 pm by Derek »
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

chloes mema

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #179 on: February 02, 2012, 01:27:31 pm »
Good luck, Lisa!  Sounds very encouraging.  Please keep us all posted on the results.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

 


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