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Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 298456 times)

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #150 on: May 25, 2011, 09:42:47 pm »
Well Derek, that list of foods lists some of my favorites!  Too bad we are long distances from each other... we could have an acoustic neuroma potluck!  Cherry juice is supposed the be some kind of magic elixir for inflammation. Mickey what is resveratrol?  Sounds familiar and I'm sure I can look it up on the internet but thought maybe you could tell us what it is and why you are taking it.  Had my 8th acupuncture session today.  I feel really good!  As for massage, I'm am past due for one and hope to have on in the next week or so.  If nothing else my AN has been a wake up call to take better care of myself.  That I intend to do!

C'est moi,
Lisa M  
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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!)

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #151 on: May 26, 2011, 08:49:36 am »
Hi Lisa! Resveratrol is a substance found especially in red wine which supposedly enhances longevity. According to studys it`s supposed to be good for you but the problem is you would have to drink to much to get enough out the red wine. Thats why they have a supplement so you can get levels needed and you don`t have get "tipsy" every day. haha, Mickey
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Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #152 on: May 26, 2011, 12:12:25 pm »
Hi Mickey...

Not contained within the list of anti-inflamatory foodstuffs in my recent post was red grapes which I have consumed twice daily on my morning cereal and with my evening sweet / pudding for the past 5 years or so. Thought I would check and see if red grapes have any particular health benefits and would you believe it... they are also high in resveratrol which allegedly also assists in preventing cardiovascular problems and for us chaps...inhibits prostate cancer cell growth!...think I'l double my daily ration!

Regards

Derek
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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 #153 on: May 26, 2011, 09:22:42 pm »
Hi Derek! Seems to me red grapes are a great alternative from red wine to get more resveratrol plus other benificial nutrients for a healthy lifestyle. Whatever we can find to keep ourselves heathy and keep postin the news! Best wishes, Mickey
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Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #154 on: June 23, 2011, 12:50:39 pm »
With in excess of 25,000 views since it started in 2007, my sincere thanks to the Executive Director, ANA, for making this thread a'sticky'.

In addition to being a useful reference point, particularly for those newly diagnosed and seeking advice and guidance relevant to 'watch and wait' as a treatment option,  the ready access of this thread will also hopefully encourage continued input from others who can provide invaluable contributions. 
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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.

skipg

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #155 on: June 28, 2011, 10:20:40 am »
I am recently diagnosed but I have noticed that if I do not watch my blood pressure I feel stuffy in the head. This started about last year and the official diagnosis for AN was Jan 3, 2011. The AN sysmptons were present the end of last summer (AUG/SEP). The head feeling diminishes with lower BP readings. I eat lots of fruits and vegetables and also drink 2-4 cups of Hibiscus Tea a day. The tea lowers blood pressure naturally without taking meds. Different studies have shown almost same results between people with high BP taking pills vs drinking the tea. Google Hibiscus Tea and high blood pressure and do not stop taking your meds without your docs input. Its funny but my Dr wanted me to go on BP medicine last year and I decided, with his oversight, to go the natural route, then when I gave him my print out from 6 mos of declining BP readings he did not want to believe the tea had anything to do with it. Maybe it is me but as long as I keep my BP under control the headfullnes is not as bad.
Skip
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Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

skipg

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #156 on: June 30, 2011, 06:22:53 am »
Derek
I was just going back over this thread and your rely #4 hit home. Thanks for the tip on using the AN moment for forgetfulness. Now I have a backup to the senior moment, or maybe I will use the AN excuse first.

Skip
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Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #157 on: June 30, 2011, 07:24:16 am »
Hi Skip...

Commiserations re your AN diagnosis but just remember you are one in a million - well almost!  :) So pleased for you that you found the ANA site and that you have currently opted for 'watch and wait' conservative management.

You make a very valid point re the methodology you adopted in controlling your blood pressure. Whilst I have the greatest respect for the tremendous job our Doctors do, there are those occasions when you have to take the initiative and do what you think is right for you. Upon my diagnosis almost 10 years ago my Dr advised that I should have immediate surgery and as the saying goes, 'the rest is history!'

I had a view of your previous posts Skip and I see that you are a keen motor cyclist and ride a Harley. Great to see that at such an early stage you are in charge of the AN and not the other way around...being a Brit I ride a Triumph Bonneville which I bought 2 years after being diagnosed not having ridden a bike for over 37 years! It was a great confidence booster and my sense of balance is now fortunately on a par with what it was pre-diagnosis. Hang in there with the tinitus, mine was also problematic in the early days but it has now virtually disappeared..I think the motor cycle engine noise won in the end!  ;D

Good to hear from you Skip and long may you remain in the 'watch and wait' mode.

Regards

Derek

 
« Last Edit: June 30, 2011, 07:50:55 am by Derek »
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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.

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #158 on: July 12, 2011, 10:13:23 pm »
Hello Wait & Watch Brigaders!

This Thursday, July 14th, I will have an MRI.  Please send all of your diminishing, dissolving, shrinking thoughts my way!

"The" AN (not calling it mine anymore!) was found in my head via MRI April 14th.  This 3 month MRI will give me a picture of what is happening in my head now.  Fingers crossed I will have positive things to report post MRI!

C'est moi,
Lisa M
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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 #159 on: July 13, 2011, 02:54:44 am »
Hi Lisa...

Fingers...toes...and even my eyes  ;D are all crossed for your anticipated good news on the 14th!

Best Regards

Derek
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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.

skipg

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #160 on: July 17, 2011, 04:52:38 pm »
Hi Derek,
Triumph Bonneville is a great choice and a classic at that. My first dealings with a Bonnie was back in 1970. I had a 69 Kawasaki 500cc (H1). A 2 cycle three cylinder that would scream for its day. My friend had a 650 Triumph that could never beat me. He was so mad he went and bought a Triumph Trident, the 750cc triple. I would kick his butt up to about 100mph then he would catch and eventually pass me. I would top out at 120 and he claimed he would go up to 140. Off the line he was no match. Enjoy the summer riding days and be safe.

Lisa, It  is the 17th and here is hoping all turned out ok. Keep us posted.
Skip
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Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #161 on: July 18, 2011, 12:29:29 am »

OK, I will confess that I was hoping for a miracle.  I had this fantasy that the MRI would reveal that the tumor had disappeared and I would shock the medical community with my series of acupuncture treatments and my disciplined diet...

Alas... the AN is still there but unchanged.  NO GROWTH.  The Dr. said the the tumor is STABLE.  I like these words; NO GROWTH & STABLE. 

My hearing seemingly also remains stable.  So far I have had 3 bouts of hearing loss.  The first; last July a year ago.  Took nothing for it and hearing returned in 5 to 6 days.  2nd time; May 8th 2011.  Took high dose of prednisone with acupuncture hearing returned in 4 to 5 days.  3rd time; June 1st 2011.  Felt it coming on, stopped took deep breathes and drank a glass of red wine.  Hearing loss lasted less than 2 minutes.  I also took mega doses of Tumeric and ginger for several days after and continued acupuncture.  Tumeric and ginger are natural anti-inflammatory agents.  Really hoping to preserve my hearing!

BTW... I rode a Penton 125 dirt bike in the 70s.

C'est moi,
LisaM
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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 #162 on: July 18, 2011, 08:13:04 am »
Hi Lisa...

Any news that indicates 'no growth and stable' is indeed a minor-miracle so congrats and best of luck in your future decision making process.

Never heard of the Penton 125 dirt bike but it sure sounds like fun!  :)

Derek
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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.

Sheryl

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #163 on: July 18, 2011, 08:14:47 am »
Hi Lisa - I'm (maybe) the queen of W&W (10 years) but I had to let you know I got a chuckle out of your comment, "I had this fantasy that the MRI would reveal that the tumor had disappeared".  As I lay on the MRI table last week, I had the same fantasy!!!  I did get the same four words that you did "NO GROWTH & STABLE" along with four other great words "SEE YOU NEXT YEAR"!!

Take care,
Sheryl
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9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #164 on: July 18, 2011, 10:00:13 am »
Hi everyone! Just sent in for my 3rd yearly MRI next month and actual 4th year plus W+W. I`m very happy to hear the magic word "stable" from everybody and hoping to continue that trend. As my doctor said at NYU medical center with W+W taking some course of logical action may keep ANs in check. There is also some promising testing going on (mostly with nf2) where someday soon ANs can be treated with oral medicine. Its nice to stay in touch and compare all we are doing which I`m sure has a great effect on our situations. The fantasy of tumor reduction (as in the case of Derek) can be a reality! Best wishes, Mickey
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