Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 275146 times)

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #390 on: March 15, 2017, 05:13:44 am »
Hi again ANSydney...

Herewith my personal response to your queries:-

1) Usually 6 to 8 hours overnight and occasionally a 20 minute nap early afternoon

2) AN ear up - my wife snores so this is one of the positives to having an acoustic neuroma with total single-sided hearing loss  ;D

3) 1 pillow

4) Since diagnosis I have increased my daily exercise regimen, maintained a healthy diet including increasing my water intake, vastly reducing my sugar and  saturated fat intake and most importantly I have constantly maintained an ultra positive mind set that I was always going to be the winner in this contest and the AN would be the loser.

5) I never take aspirin nor any form of additives or vitamin supplements

Regards

Derek
« Last Edit: March 15, 2017, 05:17:12 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.

ANSydney

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #391 on: March 15, 2017, 04:08:53 pm »
Thanks Derek. Anyone else out there with a shrinking or stable tumor that would like to answer the five questions?

pjdatty

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #392 on: April 25, 2017, 02:56:38 pm »
Hi I'm new to this forum. 

In March 2017 I had some hearing loss and tinnitus in my right ear.  Was dx'd with a 4.0 mm x 3.5 mm AN near my cochlea.   After being fitted with hearing aides my hearing is basically back to normal, and my tinnitus is all but gone ( I was on Klonopin for the T but am weaning off of that because it is some nasty stuff  - and hoping that the T is really gone for good).

I'm at that decision stage- watch and wait - or surgery.  I am 56 y.o. in good shape, work out regularly, etc.  My concern about waiting is one doc (*the surgeon) told me if you watch and wait you might wake up one day and the hearing in that ear is just gone- overnite- even if there is no growth at all :o .  I'm not so much afraid of losing the hearing as I am of losing the hearing and having the T return in my deaf ear.  That to me seems like a nightmare.

The radiation doc I met with said radiation is not a good idea because its too close to my cochlea.  He said that mine is so small it could have always been there and that W/W  is probably just fine.

I've tentatively decided to have the surgery - mainly because it is a very small AN, and everything I read tells me I would have a good shot at saving my hearing- and I just want to get it out of me.  I am actually going to the Mayo Clinic in Rochester MN next month for a second opinion on everything - i.e. radiation?  watch and wait?  or surgery?

After seeing some of the posts on here the W and W seems like not such a bad idea.

Has anyone on here heard of one that small?

Just curious about anyone's thoughts on watching an waiting on such a small AN- especially the bit about I might wake up one day deaf in that ear!   (that more than anything makes me want to have the surgery- but there is a risk of losing the hearing there as well)

Thanks for listening!

P.S>  - By the way I have one friend recently diagnosed with ALS, and another bravely battling pancreatic cancer- so when I look at the AN diagnosis etc overall I feel pretty lucky.

Paul

 



ANSydney

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #393 on: April 25, 2017, 04:32:59 pm »
Paul,

You have a very small tumor. In some European countries, you would be encouraged to go on W&W and 95% of those with tumors less than 2.0 cm in diameter go on W&W.

Your main concern appears to be keeping your hearing and avoiding tinnitus. If so, your best choice is observation; https://pdfs.semanticscholar.org/2cef/abe8e8eef1ae32cab8bcf3c71dd75f53387c.pdf

Surgery does not improve tinnitus and the abovementioned paper talks about hearing loss.

Why not go on a 2 year trial of observation with MRIs every 6 months. This will give you 5 MRIs to determine growth and enough samples to determine measurement variability. Get the MRIs on disk and examine your tumor on your PC. The disk comes with a viewer and measurement tools so you can have a good examination. Also, regular hearing tests would examine the effect on hearing.


LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #394 on: April 25, 2017, 04:57:24 pm »
Paul... one can also wake up one day from surgery deaf in one ear.  IMO...saving hearing with surgery is a gamble and the surgery itself is pretty invasive.
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!)

Abetpds

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #395 on: May 11, 2017, 03:45:04 pm »
Hi Derek and all you others on the W&W list
I too have a 2.7 AN - am 69 years and other than hearing loss in my left ear (no tinnitus) I have no other symptoms.
One surgeon who only saw the MRI insisted that surgery should be done. Two other surgeons who met with me recommended that with my age and me showing no symptoms, I should wait, do an MRI every 6 mos and if it grows or I start showing symptoms, then I should consider the next step. The surgeons said that in my case, I will be going into surgery having no adverse symptoms but will definitely have some symptoms when I come out of surgery.  I may be lucky and the tumor may not grow for 5 years or 10 or even 20 and in that case I'll have a good quality of life. If it does grow and I need surgery, ---at least I would have had - x-  years with no problems.  I thought that was a  good option! I am a very active grandmother and want to enjoy as much time doing crazy things with my grandchildren.
I am from India and am doing some Ayurvedic treatment which I hope will help. Been taking grated raw turmeric root with a glass of water each morning as soon as I wake.Go to gym 5 days a week, have a trainer 2 days who pushes me and also has me  doing balance exercises. So I opted to watch and wait until it either grows or I start showing symptoms.
I just saw another surgeon  who tried to convince me that I needed to do surgery - giving me all the possible reasons why waiting would create more complications if it grew.  However after  I told him that I was willing to take the risk of it not growing - he had a complete 180 degree turn!  Said that it is a good option to probably wait.
So Derek and the rest of you, I plan to follow your routines as much as I can.  Thank you so very much for your posts.
Regina


Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #396 on: May 12, 2017, 03:23:05 am »
Hi Regina...

I have read up on your previous posts and I agree totally with your ultimate decision to stay in W&W mode. At almost 69 years of age with no apparent symptoms other than single-sided hearing loss it makes complete sense based upon the medical advice which you have obtained, to avoid seemingly unnecessary high risk major invasive surgery and to monitor your situation via regular MRI scans. There is every chance that the growth rate of your AN has substantially reduced and indeed may have actually ceased.

Continue with your excellent healthy diet / exercise regimen and hopefully you too will beat the enemy within :)

Very best wishes

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.

ANSydney

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #397 on: May 12, 2017, 05:51:13 pm »
Congratulations Regina on arriving at a strategy. I second Derek's comments.

Sharond4usa

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #398 on: July 16, 2017, 01:47:14 pm »
Hi,
I was recently diagnosed with a 2mm left AN and while the two doctors I consulted both recommended Watch & Wait, it is surprising to me that there has been any shrinking of the tumor from "living right". What do you think impacts the tumor causing it to reduce in size? The amount of water...change in environment...exercise?
Thanks,
Sharon

ANSydney

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #399 on: July 16, 2017, 05:07:19 pm »
Sharon, I'm having trouble understanding the tumor reducing in size. I see that it is 2 mm (very small) at the moment. How big was it in the past?

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #400 on: October 05, 2017, 03:48:25 am »
A fellow forum member 'Mickey' who has been a regular contributor ( particularly supportive to this thread ) over a number of years has not posted since mid 2015. I recently sent him a couple of PMs but have had no responses and the forum moderators have no knowledge pertaining to his absence. Just wondered if anyone has any info relevant to 'Mickey'?
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.

ANSydney

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #401 on: October 05, 2017, 04:22:21 am »
Mickey was "Last Active" on October 01, 2017, 05:56:40 pm, so just a four days ago.

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #402 on: October 05, 2017, 04:56:45 am »
Mickey was "Last Active" on October 01, 2017, 05:56:40 pm, so just a four days ago.

Thanks for that info...when I last checked on 30th September 2017 his last activity was July 2015. Hopefully he will surface in due course. :)
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 #403 on: October 07, 2017, 07:22:01 pm »
Hi everyone..  I'm sorry I havn't posted in a while just had a little burn out....  Just got away from everything .
In any case Im doing fine "stable for around 10+ years now leading as normal a life as I can. All is good at 69 + just go for MRIs + check up every 2 years now unless I notice a change.   Derek who started this board one of my heros along with so much other valuable information from everyone....  Let me catch up on a bit and will make more comments in the future.  TY Mickey PS Glad to see  W+W Brigade strong option as ever...

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #404 on: October 08, 2017, 04:14:38 am »
Hi Mickey...

Good to know that you are ok... welcome back!

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.