Top Tips For The 'Watch & Wait' Brigade!

[judyl]

Hi Derek - how did you self reduce your ANA? Interested in learning more.

[Derek]

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

[judyette]

Hi Derek.  I like your strategy.  So glad it's working for you.  Thank You so much for sharing!!

[Moselle]

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]

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?

[mwatto]

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.

[Derek]

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

[mwatto]

Thanks Derek am interested in reducing fibrin as the AN gives off proteins as it dies. Tumbleweed used bromelain but serrapeptase is another option.

[mwatto]

Hi I bought honopure and the capsules are pretty large. Did it help with sleep? I wrote to the manufacturers and they said it doesnt interact with anything but I still wonder if you had any insights into usingthis product. Am working on blood thinning and this (Like Losartan) is good for that. Working on fibrin so bromelain and serrapeptase also. How are you going now? I had CK 4 years ago.

[swissguy]

The way you reduced it is amazing.
As my AN is 1 mm x 2 mm, I must admit I wouldn't mind to be able to do the same...

Apparently, you did "nothing much more" than eating healthy, drinking a lot of water, cycling, walking a lot, doing some relaxation and avoiding smoking and alcohol?
Which is already very considerable and very brave, considering you had absolutely no guarantee of any results.

I'm already doing absolutely all of it, except walking 4 miles a day. Which is something I really dislike. Of course I would do it, if I could be sure it would make a difference. Anyway, I'm doing some daily sport instead, something like 20 minutes in an intense way.
Your optimism maybe also did something. It's another element too difficult to reach for me.

Do you think it would be interesting to take some supplements or daily aspirin in my situation? Apparently, you never did?

[Derek]

Hi 'swissguy'...

Sorry for the delayed response. Whilst as you know, I have never taken any form of supplements or aspirin I see no problem in you taking them notwithstanding you are acting upon medical advice particularly so with regard to the daily use of aspirin. In my opinion anything that you believe may be helpful in assisting you with dealing with your AN problem is worth a try having due regard to the all important caveat of acting upon reliable professional medical advice.

Regards
Derek