Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 276983 times)

ppearl214

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #135 on: May 18, 2011, 04:25:25 am »
WOW, Derek! :) Congrats to you as you continue the W/W process.  Great to hear that all is going ok, that things remain stable and you are hanging tough!  May things continue this course for you! :)

Cheers!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #136 on: May 18, 2011, 09:13:46 am »
Way to go Derek! Thats great news. I`m following your footsteps with the hope that W+W can really be a great alternative treatment. Maintaining a certain healthy lifestye which are in W+W posts I`m sure has alot to do with things. 4 years and counting... Best wishes, Mickey

Jackie

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #137 on: May 18, 2011, 11:23:46 am »
Oh Derek,

Such great news that Your MRI showed no changes!!! That's just what we all hoped for! You are a role model for all of us that choose the Watch
and Wait method. May your good fortune continue and inspire us! Hoping to follow your lead!!!
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???

Jim Scott

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #138 on: May 18, 2011, 02:42:47 pm »
Derek ~

Congratulations on your recent 'stable' MRI report! 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Sheryl

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #139 on: May 18, 2011, 06:59:00 pm »
 :o WOWEE Derek - so glad to hear we are still "neck 'n neck" in our race to 10 years (or should I say head to head - LOL).  I'll be having my yearly MRI and check-up probably in July and will keep you posted, but feel as if all will be stable.

Just as an aside, hubby who has been battling a grade 2, atypical meningioma went for his MRI checkup, neuro-oncologist, and neurologist appointments yesterday.  All was clear with no tumor regrowth.  He's had two surgeries and one CyberKnife treatment - the last surgery was July, 2009, and he's never gone beyond two years without recurrence so it's looking good at this point.

Stay well,
Sheryl
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

suboo73

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #140 on: May 19, 2011, 08:39:36 am »
Derek - AWESOME report!   ;)  Congrats!

Sheryl - here's hoping you can stay neck n' neck with Derek!
And good news for your hubby!

Sincerely,

Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #141 on: May 20, 2011, 03:09:23 am »
Many thanks for your good wishes and encouraging comments which are very much appreciated and Sheryl...good to know that your hubby appears to be doing just great and hopefully will also be joining the W & W brigade at long last!  :)

Best Regards

Derek
« Last Edit: May 20, 2011, 07:51:59 am 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.

Cindyswart

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #142 on: May 23, 2011, 09:57:54 am »
i am so very confused. I started with a neurologist ( watch and wait), a neuro-surgeon ( watch and wait), An otolaryngologist (watch and wait) and then an AN Specialist- BAM! let's get that puppy otta there! He gave me some very good percentages for no loss of hearing and no facial paralysis. So now do I wait and risk increased size lowering these percentages?? i just don't know what to do! ???
Diagnosed 4/19/11 An 1.5x1.9x2.0
Surgery 8/23/11, Dr Fukushima.
Total tumor removed. SSD.
Second surgery 11/11/11 for abscess

I'm gona work like I don't need the money
I'm gona laugh like I'm not afraid to cry
I'm gona dance like nobody's watchin'
I'm gona love while I still have the time!

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #143 on: May 23, 2011, 10:29:06 am »
Hi Cindy...

Sorry to learn of your AN diagnosis but a very warm welcome to this wonderful site where you will obtain practical advice from others similarly diagnosed and who can fully empathise with your dilemma.

It would be useful in the first instance if you could provide us with some initial information relevant to your diagnosis which will assist with responses e.g. age range; date diagnosed; symptoms pre and post diagnosis; size of the AN; whether there has been any change in the dimensions since diagnosis or escalation of symptoms etc.

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.

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #144 on: May 23, 2011, 02:24:45 pm »
Just for info...


'Cindy' has now posted all of her relevant info in the General Category 'Inquiries' sub forum within the new thread ' Ballerina with AN' started on 23rd May.

Derek
« Last Edit: May 23, 2011, 03:46:48 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.

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #145 on: May 23, 2011, 06:22:24 pm »
Hey Derek, great news on your MRI!  Congratulations!

I'm posting a slight update on my situation below (posted here too http://www.anausa.org/smf/index.php?topic=15358.0).  It may be helpful to Cindy or someone else.

I had my second round of hearing loss on Mother's Day and started a dose of steroids within two hours of the hearing loss, 60mg for 5 days and then tapering off quickly for 5 days.  I started acupuncture treatments the day after the hearing loss.  My hearing came back and is perhaps slightly better than it was in March when I had a hearing test.  I've been off the steroids for almost a week and have continued with the acupuncture.  I'm going 3 times a week (costing me a fortune!), lots of needles on my AN side with as much electricity as I am comfortable with for about 30 minutes.  Last week I got a cold from a reduced immune system, thanks to the steroids, and have had a stuffy head (causing pressure in my ears) but my hearing is hanging in there.

From what I understand the AN creates pressure and presses on the cranial nerves.  The steroids reduce inflammation, thus reducing pressure.  I'm not sure what the acupuncture does, but my acupuncturist is working on the neuroma which she describes as a swollen nerve, to reduce the swelling.  The ENT folks say that the tumor is an overgrowth of the schwannoma cells.  These cells insulate the nerve, in this case the vestibular nerve (balance nerve)

As per the instructions of the acupuncturists, I have also removed all dairy products from my diet and am keeping sodium, sugar and wheat at a minimum as all of these foods are known to promote inflammation.  I 'm also drinking lots of water (thank you Derek).  I have also stopped using my cell phone except for on speaker and have stopped using my cordless headset (I've used  a headset for over 15years).  I've also been instructed to stay away from high altitudes (airplanes) and avoid swimming during treatment.  I'm also doing kundalini yoga and avoiding stress.

My plan is to continue the acupuncture until July 14th when I have another MRI.  I will have another hearing test in about 10 days to see if my hearing remains stable.  Thankfully I have great insurance for the MRIs and hearing tests, I just wish the insurance recognized acupuncture in the same way it sees other medicine.  I figure my hearing is a worthy investment!

The steroids were an awful experience for me and made me feel psychotic.  I had "wonky head" and felt really, really strange coming off the prednisone.  My gut is still suffering.  I'm crossing everything that the acupuncture works but it's too early to tell.  I will post as I progress...

Oh, one more thing, I drink red wine fairly regularly.  I had stopped for a week (trying to be more healthy) when I had the sudden hearing loss.  Turns out red wine is an anti-inflammatory and a blood thiner.  Two good things for ANs.  Cabernet Savignon is my medicine of choice!

C'est moi,
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 #146 on: May 24, 2011, 06:10:02 am »
Hi again Lisa...

Thanks for your good wishes and great to see that you are taking the early initiative in adopting such a positive stance. You have provided some very interesting info and tips relevant to reducing inflamation associated with the AN via giving up dairy products etc in conjunction with your ongoing acupuncture treatment and controlling your stress level with yoga exercises....certainly worth a try! I particularly appreciated your reference to red wine having anti inflamatory properties....and Cabernet Savignon just happens to be one of my favourites too!  ;D

Keep us posted with your progress Lisa and best of luck with your forthcoming MRI scan on 14th July.

Best Regards

Derek
« Last Edit: May 24, 2011, 06:12:23 am 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.

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #147 on: May 24, 2011, 09:34:57 am »
Hi there! We have something in common, Cabernet Savignon. As a matter of fact I used to make it and may start again. Although I did find out more than 1 good glass a day might of made it less benificial. I also take resveratrol in my package of supplements. As far as steroids, I did take them once, 5 day package. I felt like the energizer bunny and it did benift me but was hard to take. Acupuncture sounds good! Also try a good body massage from time to time ecpecially with work around the neck and head area. Best wishes, Mickey

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #148 on: May 25, 2011, 04:35:08 am »
Hi...

Lisa's recent post in this thread relevant to inflamation associated with ingesting certain foodstuffs prompted me to carry out a little research into what foods are recommended for their anti-inflamatory properties, which of course is of obvious considerable interest to us ANers, and I was more than surprised that I was already using many of them which I would like to think is assisting with my longevity in the W & W mode!

The following are a few of the popular ones highly recommended:-

Tuna and salmon (particularly the wild Alaskan variety)

Grass fed beef

Vegetables - particularly broccoli, cabbage & cauliflower

Salads -  dark green lettuce, spinach, tomatoes

Fruit - cherries, apples, strawberries, raspberries, fresh pineapple, blueberries, (interestingly, blueberries apparently assist the brain from aging!)

Nuts - almonds and walnuts

Green Tea - 1 x cup per day


Best Regards

Derek




« Last Edit: May 25, 2011, 03:04:11 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.

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #149 on: May 25, 2011, 02:37:36 pm »
Great foods Derek! All have been a big part of my diet +. Have eaten blueberrys everyday going on 4 years! Mickey