Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 262477 times)

judyl

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #420 on: November 19, 2021, 01:23:25 pm »
Hi Derek - how did you self reduce your ANA? Interested in learning more.
11/2/17 MRI w/o contrast for positional vertigo-1.3 cm mass in left IAC
11/8/17 MRI with contrast - AN 1.4 cm x .5 cm x .4 cm
5/23/18 MRI w/o contrast 1.4 cm x 0.6 cm x 0.5 cm.
11/2018 and 11/2019 MRIs stable
6/2021 and 8/2021 MRI AN 1.2 cm x .5 x .5 and new pituitary microadenoma

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #421 on: November 20, 2021, 06:11:36 am »
Hi there Judy...

My antecedent history of living with my AN is well chronicled in the 'Top Tips' thread. In a nutshell there was no 'magic bullet' for the reduction in the dimensions of my AN. I made the decision to rely on conservative management of my condition after very lengthy research and medical advice following my initial diagnosis of a 2.5cm AN in 2002 aged 57 years.

I have since maintained a healthy lifestyle including moderate exercise, a healthy diet, and increased water intake. In February 2022 I will be celebrating 20 years since diagnosis as I head towards my 78th birthday in April. Throughout the past two decades my AN has reduced in size to the current 1.3cm and has been stable for many years. I now have MRI scans with contrast every three years and my only symptom is total hearing loss on my affected right side which is of no problem to me.

Treatment options are of course a personal choice but from the outset I resolved not to have any form of invasive treatment if I could possibly avoid such, based upon regular MRI scans and the advice of a neurosurgeon in whom I have complete trust. In my opinion any form of surgery runs a greater risk than conservative management. I have always maintained a positive mindset in that I have never accepted that I have a 'brain tumour' per se but that I have a small benign growth on my audio nerve with consequential hearing impairment. I am now at the fortunate stage whereby my AN condition is no longer a prominent factor in my life and I have periods of many weeks when it does not even enter my thought process.

Overall this strategy has worked for me and I am sure it could work for many others.

Best Regards

Derek

« Last Edit: November 20, 2021, 06:13:40 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.

judyette

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #422 on: November 20, 2021, 11:14:36 am »
Hi Derek.  I like your strategy.  So glad it's working for you.  Thank You so much for sharing!!

Moselle

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #423 on: May 24, 2022, 02:16:39 pm »
I had my first consult today with UCSD Dr Friedman.  It’s a relief that he recommends watch and wait, and to get a second MRI in October and as long as I don’t get any new symptoms I can wait till October for the next MRI.  I like the conservative approach.  He said it is a 15mm tumor so still in the small range. As for things to do:   I haven’t been walking 4 miles a day but now at about 1.6 miles a day.  The tips here are very useful. 

davebanninga

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #424 on: December 20, 2022, 10:34:06 am »
Was wondering if there is anyone on the W&W list that has a tumor size greater that 4cm?

Hi Abetpds, yes! i'm in the watch and wait with a 40mm sized VS i barely have any symptoms / complaints besides 45db hearingloss and  very subtle tinnitus and a nasty headache. Maybe it has to do with my ages since i'm only 29 y.o so pretty young for a VS that size.

they concluded my quality of life atm is higher then it could possibly be after surgery, i've been diagnosed in november.


What's the size of your VS, and what kind of symptoms do you experience?

« Last Edit: December 20, 2022, 12:07:56 pm by davebanninga »
Diagnosed Nov '22 
left AN 40mm
Put on wait and scan

Jan' 23 vomitting and severe headaches.
2nd MRI Jan'23 showed 48mm (8mm increase because of bleeding in tumor)

Surgery planned for 23th of Feb '23

mwatto

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #425 on: January 15, 2023, 02:38:13 am »
Derek do you think serrapeptase might be useful? Am on a forum that talks about this re fibrin and was thinking although I use bromelain serrapeptase might be better. It works mainly on fibrin. I am going to try this.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.
MRI 2021 stable no change
MRI 2022 stable no change.

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #426 on: January 16, 2023, 01:41:54 pm »
Hi 'mwatto'...

I have never taken any form of supplements following my AN diagnosis some 21 years ago and prefer to rely on natural aspects akin to a healthy diet / lifestyle and regular exercise. However this is my personal and somewhat sceptical view but I can well understand anyone who seeks anything that will have a positive effect on dealing with the AN condition.

With specific regard to serrapeptase which is believed to be useful as an anti inflammatory, I note that prolonged use in excess of 4 weeks can be dangerous resulting in joint pain; muscle soreness; nausea / stomach pain; poor appetite; skin reactions a cough and blood clotting particularly if blood thinners are being used. I would therefore personally not be inclined to want to take such medication.

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.

mwatto

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #427 on: January 17, 2023, 07:11:02 pm »
Thanks Derek am interested in reducing fibrin as the AN gives off proteins as it dies. Tumbleweed used bromelain but serrapeptase is another option.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.
MRI 2021 stable no change
MRI 2022 stable no change.

 


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