Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 226656 times)

keithmac

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #405 on: October 08, 2017, 05:31:12 am »
It's always good to learn that things are going well for a member.  I'm hoping I'll be at a similar point one day.   :)

So often it's the 'bad stuff' - understandably - that features on forum pages.  Here in the UK the website forum pages of BANA are little visited anyway compared with those of ANA.  Facebook seems to have seduced potential website members.

daoisthere

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #406 on: October 09, 2017, 05:21:45 pm »
Hi Derek,

Thanks for your encouragement.  I just begin the journey.  Baby steps... Baby aspirin steps.

Daoisthere
08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #407 on: October 10, 2017, 03:21:51 am »
Hi daoisthere...

I have read your previous posts and your essential thorough research has undoubtedly had a major impact on the decision to choose conservative management of your AN. Albeit I have not personally taken aspirin I agree with your decision based upon the medical evidence which you outlined in another thread. Very best of luck on your AN journey.

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.

daoisthere

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #408 on: October 10, 2017, 03:48:08 pm »
Hi Derek...

The wonderful support from this group is just unbelievable.   The anxiety was really having an impact on my tinnitus/outcome in general.  Now that I have made a decision,  I can already feel the effect it is having on my emotional outcome.  I know that things don't always workout the way that one plans on. But at least I am having my say on the matter.

Peace,
Daoisthere
08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #409 on: March 14, 2018, 09:55:25 am »
Greetings Fellow W&Ws

I'm not on the forum much anymore but someone PMd me today for an update and asked that I post to the forum. Here it is short and sweet:

Original diagnosis 4/2011.  Had my first MRI since 2012 last December (2017).  Tumor is stable.  Reduced by half in size from original diagnosis 4/2011; no change since 3/2012.  I still take 3 capsules of Honopure each night and meditate with mantra daily.  I do not hold a cell phone to my ear, use the speaker phone and use the cell sparingly.  I remain gluten & dairy free and enjoy red wine.  Had a bout of dizziness 10 days after MRI in December which caused some concern but that has corrected itself and may have had nothing to do with the AN.

This thread started by Derek gave me the courage to wait and watch.  I am eternally grateful for having found this forum.  Life is good!
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 #410 on: March 15, 2018, 04:52:09 am »
Hi Lisa...

Great to know that you are doing so well and that your original decision to 'wait & watch' was the right choice for you. Hopefully you will continue to maintain your progress as you are certainly doing everything possible to beat the 'enemy'. I am now into my 17th year since diagnosis and my AN is now rarely in my thoughts.

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.

Abetpds

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #411 on: May 06, 2018, 07:25:21 am »
Was wondering if there is anyone on the W&W list that has a tumor size greater that 4cm? 

Mrd1030

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #412 on: May 15, 2018, 08:21:40 pm »
Hi, I live in West Texas and was diagnosed with this AN in March 2018.  We have since met with Neuroontologist; Surgeon and Radiologist in Dallas at Southern Methodist Medical Center in May.  This group of Doctors were great and completely honest with me concerning  all options.  The wait and watch option made the most sense and with prayer this decision left me in perfect peace.   Derek, I have enjoyed reading your journey and I agree- we must take care of ourselves.  The forum has helped me learn so much about this tumor and so many brave people that are also on this journey!  I will continue to exercise to help me maintain my balance, and the hearing loss I am dealing with and the constant ringing I am adjusting too. 
Thank you all.

voron999

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #413 on: December 28, 2018, 03:37:43 pm »
I figured I send a ping up here.

Pretty soon I will turn 3 years since officially diagnosed.
Pretty much W&W status for now and indefinitely.
Am told to check back in 2 years after my September MRI - no growth found.

Tinnitus - yes.
Pretty much a part of me now.
Jan 11, 2016: 4 x 3 mm nodule in the left ......consistent with an acoustic neuroma.

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #414 on: April 02, 2019, 01:08:09 pm »
Just an update for you re my recent biennial MRI result which indicates stability with no increase or decrease in dimensions of the AN as I commence my 18th year since diagnosis.

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.

notaclone13

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #415 on: April 02, 2019, 03:18:06 pm »
Congratulations Derek,

You are our Watch and Wait Hero and inspire many of us to hang tough. It is not easy to wait these things out. Uncertainty is so stressful. Do you still have tinnitus, or has that pretty much stopped for you at this point? Do you retain any hearing in your AN ear?

Cheers,

M.A.

ANSydney

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #416 on: April 02, 2019, 04:05:55 pm »
Congratulations Derek! 18 years since diagnosis and your tumor over the years has shrunk from 2.5 cm to 1.3 cm and with resolution of all symptoms except for hearing. Of course, intervention will not improve hearing. And usually accelerates any hearing loss.

That is great. I hope to be in that very limited club in a very limited club one day. In the mean time, 2.5 years after diagnosis my tumor is stable. Shrink you scoundrel!

Derek, you're an inspiration for those that want to see what happens next rather than just treat first and ask questions later.

Conservative management of vestibular schwannomas: third review of a 10‐year prospective study by Hajioff et al had 22% of tumors shrinking (16/72). I wonder if long term the percentage of tumors that shrink increases. After all, they would have a hard time establishing a (precarious) life support system.

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #417 on: April 02, 2019, 04:22:20 pm »
Hi M.A.

Many thanks for your kind words. Fortunately my tinnitus completely abated several years ago but total hearing loss on my affected right side occurred within a few months of diagnosis way back in 2002. Single-sided hearing has never been a problem for me throughout the ensuing years and it is truly amazing how the human body adjusts and adapts to the balance and audio problems associated with the AN condition.

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 #418 on: April 02, 2019, 04:41:18 pm »
Hi there ANSydney…

Your encouraging comments are greatly appreciated. I am convinced that many of those who are newly diagnosed could also become long-term 'Watch & Wait' candidates if they did not unnecessarily rush into early invasive treatment options subject of course to the all important caveat of regular MRI scans and acting upon the advice and guidance of a consultant in whom they have complete confidence.

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.