Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 277282 times)

Jim Scott

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #75 on: April 25, 2009, 01:50:07 pm »
Derek:

Congratulations on the attenuation of your AN.  This is relatively rare, but obviously, it does happen....and I'm glad it's happening for you.  Thanks, too, for the addition to the 'tips'.  All good.  :)

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.

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #76 on: April 25, 2009, 02:40:31 pm »
Hi Derek! WOW! That is fantastic! I`m hoping to follow in your footsteps. Have been going on two years with this coming AUG. MRI. So far everything is stable. I`m following all that you have said +. Want to thank you for inspiration and wish you well going into the future. Mickey

Jackie

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #77 on: April 25, 2009, 04:32:57 pm »
Hey Derek,

Fantastic news! Wow, I am impressed and as others have said I love hearing from you, with again such good positive input! I passed the two year mark in Feb. and will have my next MRI in July and am hopeful for great news also! It is a challenge doing the "Watch and Wait" but I have definitely come to a calm peaceful place in that regard. Bless everyone where-ever you are on your AN journey!
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???

Vivian B.

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #78 on: April 25, 2009, 08:12:07 pm »
Hi Derek,

As I mentioned before, I found your input very comforting and inspirational. I am so glad for your results. It looks like some day it may shrink for good. Keep doing what your doing.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Sheryl

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #79 on: April 25, 2009, 08:26:29 pm »
WOWEE  :o  What absolutely great news!!  I'll be happy to stay right behind you hoping to get news just as good at my eight-year MRI in November.  Keep in touch.
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

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #80 on: June 11, 2009, 08:49:35 am »
Hi all...

Here's my update re the results of my recent  annual (the 7th!) MRI scan whereby you will recall that under UK legislation I requested from my local Health Authority a copy CD of my scanned images and the relevant neuroradiologist report as without this info I would have had to wait some months for an appointment with my consultant to obtain the results which creates an undesireable element of mental stress.

Well, having viewed the images everything looked to be OK from my 'layperson' perspective and I am delighted to say that the report also supports my opinion PLUS, the AN is now documented as being 1.5cm which is a reduction of 3mm since my last scan in March 2008! You may recall from my previous inputs that upon diagnosis in 2002 my (then) micro consultant informed me that the AN was 2.5cm and recommended 'early' surgical removal which prompted me on my very extensive research mission which eventually led me to this amazing website and resulting invaluable advice and empathy from others who had experienced the AN 'journey'.

Even allowing for discrepencies in the imaging process, it therefore appears that my annual MRI scans have indicated a gradual reduction in the size of my AN over the past 7 + years whereby it is now showing an overall reduction of 1cm since original diagnosis!

I am optimistic that my GK consultant will be in full agreement when I eventually get to see him and I will update you accordingly...etc




Best Regards

Derek



     




Hi all...

Herewith my update as promised....I am very pleased...and relieved...to report that my consultant has only today informed me that he is in total agreement with my 'DIY' assessment of my recent MRI images and has given me his 'ok' to carry on with the 'watch & wait' for another year..so well into my eighth year now since original diagnosis and long may it continue that way!

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 #81 on: June 11, 2009, 10:03:59 am »
This is great news Derek! I do have to ask you something. What would you attribute in your lifestyle if anything which has brought about these amazing results? As I said before I`m trying to follow your footsteps (2 years W+W stable). I do have some of my own ideas and need all the imput I can get. Thankyou! Best wishes, Mickey

Sheryl

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #82 on: June 11, 2009, 06:30:24 pm »
 ;D YIPPEE from one of your "wait and watch buddies" heading up right behind you!!! 
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

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #83 on: June 12, 2009, 12:40:39 pm »
Mickey / Sheryl

Thanks for your encouraging comments and best wishes with your respective 'battles'.

Mickey... For what it is worth...the following is my personal perspective on dealing with the AN condition.

I strongly believe that if you are 'fortunate enough' to be diagnosed with an acoustic neuroma that is of a size suitable for conservative management (watch & wait) then subject to suitable advice from your neuro consultant together with annual MRI scans which hopefully indicate no increase in the size and on the proviso that there is no escalation in the symptoms, then I passionately believe that 'watch & wait' is the way to go.  I cannot see any advantage in taking unnecessay risks, however minimal, which are applicable to microsurgery or radiosurgery if there is no immediate necessity for medical intervention particularly so if, as in my case, you are of senior citizen status!

I would like to think that my general lifestyle, diet and exercise regime that are well documented in my OP and subsequent posts in this topic have been fundamental in controlling my AN. Unfortunately I cannot substantiate that claim with any scientific or other specific evidence but I am a very strong willed individual with total self belief. I have rigidly adhered daily to every 'top tip' that I have mentioned since my diagnosis almost 8 years ago and I believe that therein lies the secret...total commitment and self belief.

Other than my immediate family, I have never disclosed my AN condition to any other relatives, friends, associates or work colleagues prior to my retirement 5 years ago notwithstanding the balance problems and hearing difficulties that I experienced in the early stages of my diagnosis when I was then a senior police officer in a major UK force leading homicide investigations.  Indeed I cannot recall the last occasion that I openly discussed my condition with my immediate family, preferring that they remain free of any unnecessary worries or concerns so the aspect of support and understanding from family and friends has never been a requirement for me albeit I fully accept that such a strategy may not be a viable option for others diagnosed with the AN condition.

Further, and remaining on a positive vein, I have never accepted that I have a BRAIN TUMOUR nor that I am part DEAF... the words in capitals are expressions that I never use relevant to myself. I am more than happy to accept that I have a malfunction of an acoustic nerve resulting in diminished hearing on one side. Pause a while and consider the aforementioned two descriptions of the same condition....I know which one I would choose!!

Just my take on the situation and my own personal positive methodology of dealing with it... I accept that it may not be suitable for others to adopt but hey...as far as I am concerned it is tried and tested and works for me!.

Best Regards

Derek



« Last Edit: June 14, 2009, 05:04:05 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 #84 on: June 12, 2009, 02:54:31 pm »
Hi Derek! I`m just letting you know that I`m following your footsteps and actually feel pretty good. I`m 61 years old and pretty much feel the same way you describe yourself going into the future. I also have made a coupe of adjustments supplement wise which I will mention only when I`m certain that progress has been made thru MRI`s. Thankyou for yor positivness and I will be checking out more of your posts, Best Wishes, Mickey

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #85 on: December 09, 2009, 12:12:36 pm »
Hi all..

Here's another 'Top Tip' for fellow 'watch & waiters' as we head into the festive season...

Firstly...Congratulate yourself that you are extremely fortunate to be able to 'watch & wait'

Next...Give your AN a vacation and have a determined mindset not to think about it over the holiday period

Finally...Do have a great Christmas and a fantastic New Year celebration

Very best wishes for a happy, healthy and prosperous 2010

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.

suboo73

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #86 on: December 09, 2009, 04:57:03 pm »
Hi Derek,

Thank you for another GREAT 'TOP TIP' for those of us in W &W.
AN vacation - sounds wonderful to me!

Happy holidays to you to and continued good health in the New Year!

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

ppearl214

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #87 on: December 10, 2009, 02:53:25 pm »
Hey Derek!

ya know... I follow this thread... gain insight from it and watch how you keep adding wonderful info here! I commend you... wish you the happiest of holiday seasons.... and yes, will try to take an AN vaca... lordy knows I need one! ;)

Happy, HEALTHY prosperous holidays to you!
Phyl


Hi all..

Here's another 'Top Tip' for fellow 'watch & waiters' as we head into the festive season...

Firstly...Congratulate yourself that you are extremely fortunate to be able to 'watch & wait'

Next...Give your AN a vacation and have a determined mindset not to think about it over the holiday period

Finally...Do have a great Christmas and a fantastic New Year celebration

Very best wishes for a happy, healthy and prosperous 2010

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

Larry

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #88 on: December 10, 2009, 07:21:00 pm »
Derek,

Great news on you maintaining W&W status. I must say though that unless you have a magic potion, these AN's don't shrink without cause. I would dare say that the measurement process made by your initial doc was probably different to the measurement process made now. Some docs include the growth inside the bone structure, others don't.

Anyway, being able to stay W&W for so long is fantastic.

cheers


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #89 on: December 11, 2009, 05:45:02 am »
Hi there Larry...

Thanks for your comments and hope all is well with you.

The only 'magic potion' that I am aware of is the excellent advice and guidance of my neuro together with the daily diet and exercise regime that I have adopted since diagnosis and which is well documented in this thread PLUS, my single minded belief and determined mindset that I am the one who is in control of the AN and not the other way round!

This philosophy works for me and that is the way it is going to remain...there is only going to be one winner in this contest and that will be me!

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.