Top Tips For The 'Watch & Wait' Brigade!

[Derek]

Upon diagnosis it is usual and normal to initially experience a multitude of emotions such as shock and fear of the unknown etc. Then at a later stage when composure and a desire to fully understand the AN condition sets in, it is usual to spend many hours accessing the countless internet websiites and hopefully  eventually access the ANA Discussion Forum which to my mind is the ultimate source of practical information and advice.

 Whilst it is an extremely comprehensive data base for information relevant to the AN condition it is of course totally dependant upon inputs from those whose advice and experience is invaluable to others who are newly diagnosed and often in desperate need of reassurance and guidance.

However, from a personal perspective having constantly accessed this 'site on a daily basis and provided regular inputs, I have recently reached the conclusion within my 'watch and wait' mode that the less I think about my AN condition (which fortunately has only minor side-effects re SSD) the easier it is for me to accept it. Therefore I no longer access AN related websites on a robotic daily basis and my now infrequent access has produced a theraputic reaction in that my AN is no longer the main feature in my daily routine.

I think that excessive use of the internet 'sites can be counter productive but used sensibly they are indeed a most useful tool in the AN chest.

Derek


 

[Derek]

Here's another tried and tested tip that has worked for me and I recommend that you give it a try.

Set yourself a personal challenge which you are determined to achieve and be totally committed to the task that you have set.

Having regularly undertaken brisk daily walks and motorcycling in order to assist with my balance, I have recently acquired sufficient confidence to use an extending ladder to carry out DIY tasks some 20 feet from ground level.

A relatively unremarkable and simple task in normal circumstances but it was my personal challenge that I had set for myself and having succeeded, it has been a great boost to my morale.

Derek

[Derek]

Just recently ascertained from a reliable medical source that adrenaline may act as a tumor stimulant and therefore whenever possible it is adviseable to minimise undue stress.

Derek

[ppearl214]

Hey Derek! That's an interesting factoid!  What is the source of that so I can read up more? I'm sure my CB would like to know as well since I'm constantly running high on adreneline and have/had many growths.

thanks!
Phyl

[Derek]

Hi Phyl...

The source is no other than our tried and trusted friend Dr Medbery on the CKPSG 'site.

I raised a topic with him yesterday under the thread 'Theme Park Scary Rides' requesting his opinion as to whether riding on super-fast theme park rides could have any adverse effects upon someone diagnosed with an acoustic neuroma. He suggested that it should not but he qualified his opinion with the caveat that "adrenaline may be a tumor stimulant."

Regards

Derek

[Derek]

As an initial goal in furtherance of achieving good balance, aim to put your socks / undergarments on / off without leaning agaiinst anything for support.

 It might be adviseable to be adjacent to your bed when practiciing this routine in the early stages as it makes for a softer landing!

[Derek]

I do a brisk daily walk of 5 miles over varied terrain as part of my regime to maintain good balance. In furtherance I personally have found it beneficial whilst continuing to walk forwards, to occasionally look up at the highest point of a building and to also glance over my shoulder. I constantly aim to increase the time that I can maintain my eye contact whilst undertaking these tasks....whilst making sure that I avoid bumping into trees etc!! (lol)

Derek

[antoinette]

Hi Derek,
Thanks for the TopTen list, it is similar to mine but I have a few more. I was always counting on mine choosing "involution" and ending with just a shadowy trace of a dead AN, I was so upset to find every MRI proving no change in that direction. I know of only one patient whose AN shrunk to half the size. It was such a hit for us (the previous ANA list before the forum). Apparently involution may occur to up to 17% of patients but since 90 % or more of them are having treatments before the shrinking has a chance to happen, it is difficult to assess and make statistic. I still expect mine to (at least) not grow significantly enough to force me into surgery. The present size would forbid radiation anyway.
I will write my list soon and send it to you.
Best regards, antoinette
AN since 1990/92 - dx 97 - no treatments 2cm.9

[Derek]

Hi all...

Another tip primarily intended for the newly diagnosed...

If you have any AN queries including matters relevant to the 'watch & wait' mode and you would prefer a professional medical response and guidance, I can unreservedly recommend access to the Cyberknife Support Group at www.cyberknifesupport.org/forum

Just click onto 'Brain' and you can send a question to the Doctors who will normally respond on the same day...and it will not cost you anything!

Regards

Derek

[Derek]

A brain training tip which may assist with improving matters relevant to single-sided deafness...

For the past few months I have increased my visits on foot to busy city / town centre locations where there is a high volume of vehicle and pedestrian use. This exercise requires constant concentration, awareness and turning of the head in coping with the many and varied noises and sound levels applicable to busy urban areas with particular emphasis on learning to identify the all important aspect of direction of the various noises.

I have personally gained benefit from the exercise in that my ability to identify the direction of sound,particularly when at social functions etc, has vastly improved and I now find that the hitherto necessity to constantly assess sound direction has greatly diminished.

Give it a try...but take care in that traffic!

Regards

Derek

[OMG16]

Great list it reminds me of Letterman's top 10.  I think I would add time with Family.

[Derek]

Hi Derek,
Thanks for the TopTen list, it is similar to mine but I have a few more....I will write my list soon and send it to you.
Best regards, antoinette
AN since 1990/92 - dx 97 - no treatments 2cm.9

Hi Antoinette...

Eagerly awaiting your additional list  of Top Tips!

Regards

Derek

[Derek]

Hi all...

Another 'tip' when you decide to watch & wait is to have lots of self-belief and to acquire an abundance of PATIENCE!

I developed total hearing loss on my affected right side within weeks of diagnosis 6 years ago. I initially found that aspect very frustrating and considered the possibility of being fitted with an aid such as the BAHA but decided that such a deviice was not suitable for my personal lifestyle. However, gradually over time, nature has kindly assisted in compensating the effect of single-sided hearing loss and I now firmly believe that the natural compensating process together with the regime of 'tips' (as per my original post) that I have religiously stuck to has enabled me to function socially on a daily basis with absolutely no problems. It has certainly worked for me.

Regards

Derek

[Derek]

My wife usually retires to bed before me and being a considerate husband and in furtherance of not  waking her by switching on the light (if I did she would murder me!), I tend to undress and visit the bathroom etc in total darkness. This habitual performance has in fact had considerable theraputic benefits from the AN perspective in that it has been a very successful exercise with regard to assisting in improving and maintaining good balance.  Give it a try...but you are not allowed to yell when you stub your toe!!

Regards

Derek

[Derek]

Hi all...

Just wondered what the motivating factors were in influencing your decision to go the 'watch and wait' way which could be useful tips / advice for those fortunate enough to have a choice of treatment options and who are contemplating 'watch and wait'.

For me, now into my 7th year since diagnosis, it was the fact that I did not want to involve myself in any unnecessary morbidity risks, however minimal, that are associated with any form of AN treatment and postponing any non-essential treatment until such time that I am advised that intervention is required allows me to take advantage of ongoing new developments and techniques associated with with the various treatment options.

Derek