Top Tips For The 'Watch & Wait' Brigade!

[Mickey]

Way to go DEREK! Your the General in this brigade! Right now I`m in officers candidate training hoping to be a 1st lieutenant by New Years. (3rd year) haha. Lets keep on keeping the enemy ANs where they belong. Happy Holidays, Mickey

[Larry]

Derek,

I think I'll revisit your life style and grab some pointers.

cheers


Larry

[Derek]

Sue / Phyl / Larry / Mickey...

Your respective comments are greatly appreciated and will certainly add to my resolve in the ongoing battle with the enemy!

Best wishes

Derek

[Mickey]

A Merry Christmas and happy holidays to all! Lets take this beautiful holiday season with love, prayers, and positiveness and apply it to our AN community and everywhere else needed. God Bless, Mickey

[Derek]

Hi again fellow W&W's...

Just a brief update as I await my annual MRI due next month. Fortunately I have had no additional AN problems over the past year and I remain optimistic (as always) that I will get a 'pass' for another year which would bring me into my 9th year since diagnosis.

Here's another tip that you might like to consider. Singing is well documented for its therapeutic and physical health benefits so I have recently joined a group of fellow enthusiastic beginners in my area. I have already benefitted from the added confidence and sense of personal achievement that I have gained from the challenge of singing in a group and I am pleased to report that my single-sided total hearing impairment (note that I still refuse to use the 'deaf' word) has caused me no difficulties whatsoever...indeed I have even had compliments relevant to my singing ability albeit (as is my choice) I have not disclosed any aspects of my AN condition to my fellow songsters...just my way of coping with the AN problem as I prefer not to make it a public issue.

I will post my MRI results just as soon as I have them albeit I will again have to do an initial DIY analysis of the images as the UK National Health Service (NHS) can take quite some time to channel the official results.

Regards...and get 'singing'!!

Derek
 

[Mickey]

Hey Derek! Glad all is going well with you. Looking for some good news for you this MRI. Singing sounds like a great idea to help us ANers get along. May well have some thereputic overtones. haha! I`m going for my 3 year MRI in  a few months. Like you looking for no intervention unless necessary. As for now I`ll be singing in the shower. Talk soon, Mickey

[Jackie]

Hello Derek,

Good for you that you have found singing so therapeutic! Unfortunately for those around me, if I were to sing they would all wish for double-sided deafness! Hahahaha! The good Lord didn't bless me with good vocals, probably because He knew I'd be a showoff! Anyway, looking forward to you "Pass" to next year also! My next one is also in a few months, I just passed the 3 year mark! Hopefully we can all keep going!!! Blessings to you and the rest of our W and W buddies.

Jackie in Oregon

[Derek]

Mickey / Jackie..

Thanks for your comments. Just to mention further that in addition to the obvious social benefits gained from learning to sing in a choral group, I have also found that implementing the important aspects of correct posture and breathing in furtherance of good voice production, particularly when standing for extended periods, has been great exercise for the compensating balance nerve. Also...in having total hearing loss on my right side, my 'good' ear has had to work twice as hard to identify the correct pitch, tone, key etc of the notes being sung in order that I remain in tune thus I do believe that the hearing on my left side is more acute than hitherto. No scientific basis for this of course...just another aspect of self belief that works for me.

Regards

Derek

[Derek]

Just had my 9th annual MRI scan and awaiting the result. For info my last three scans have been in diifferent hospitals who each use different types of MRI machine and diifferent neuro radiologists. My most recent scan was carried out on a newly installed latest model Siemens unit which reduces the time that the patient is in the scanner and when contrast enhancement is used, allegedly produces superior images with better differentiation between the brain and the tumour resulting in greater definition of the tumour environment.

You will be aware from my previous posts and from my signature, that upon diagnosis in 2002 the dimension of my AN was assessed at 2.5cm and that over the ensuing years the AN has apparently reduced to 1.5cm as per my last scan in March 2009. It will be most interesting to see what dimension my AN is now given using the latest Siemens technology etc and if it is still assessed at 1.5cm or less and with no problems being indicated, I will be a very happy man indeed.

I am dependent upon the UK National Health Service (NHS) with this process and the official results will not be made available to me for at least 2 - 3 months therefore, as per the same procedure whch I adopted last year, I will have to make application under the UK law Data Protection Act whereupon I will be provided with a CD copy of my scan images together with a copy of the neuro radiologist report then carry out an initial DIY assessment prior to the consultation with my neuro specialist for the official verdict.

I will of course initially post you with my own DIY assessment just as soon as I have the info which should be mid / late April.


Regards

Derek

[AIteach]

Hi Derek,
I am a newbie to the Watch & Wait Brigade.  Your story has been inspirtational.  My AN was just diagnosed in February.  It is small; 6mm (x3mm x2 mm??).  I've had a lot of anxiety about what I will do if the next MRI comes back that it has grown.  There's insurance issues, employment issues, childcare issues, along with my own fears.  Reading this thread has helped me to calm down and realize that I may very well be waiting and watching for a long time.  (One day at a time)  Your news is great, Congratulations!  I'll be saying an extra prayer that your new MRI results are even better.  Thank you for all of your helpful hints and tips.  Thanks to everyone on this thread for putting a positive spin on this watch and wait status.

Lauren

[Derek]

Hi there Lauren...

Sorry to learn of your recent diagnosis but a very warm welcome to this wonderful forum where you are among knowledgeable friends who can empathise with your your situation and who will always be ready to offer advice and support throughout your AN journey. Many thanks for your kind remarks and encouraging comments relevant to my posts on this particular thread.

I reviewed your previous posts to enable me to fully understand your circumstances relevant to your diagnosis and I note that your AN has dimensions that are rightly classified as 'small'. That salient point is a major positive factor for you in that you are very fortunate in having time to fully research all available treatment options including 'watch and wait' conservative management. Your ongoing thorough research together with the advice from consultants whom you fully trust and who have extensive experience in microsurgery and stereotactic radiosurgery relevant to the treatment and management of acoustic neuromas together with your own 'gut feeling' will ultimately lead you to the right decision.

I also noted that you have total hearing loss on your non AN side and that the aspect of total hearing loss on both sides would not be the major factor effecting your ultimate treatment decision re you already having the ability to communicate by sign language. Having due regard to that aspect I would be inclined to monitor the situation via regular MRI scans and act upon the advice of your consultant(s) relevant to being able to continue in the 'watch and wait' mode. Do not be alarmed if your next scan indicates a very marginal increase in the size of your AN as the MRI apparatus can produce inaccuracies and further scans may well indicate that the dimensions of your AN have not increased. The 'average' rate of growth is about 1 to 2mm per year so if your ongoing MRI scans all indicate that the AN is increasing in size then that is when treatment intervention should be your major consideration particularly if you have experienced an escalation in your symptoms.

Remember that irrespective of whether you have microsurgery, stereotactic radiosurgery or remain in the 'watch and wait' mode you will always require regular MRI scans in order that you can take immediate action in the event of re-growth occurring so you may as well remain in 'watch and wait' for as long as it is considered safe for you to do so.

Very best wishes with your ultimate decision....which will be the right one!

Derek

[Sheryl]

Hi Derek - It's me - your fellow runner up wait and watcher.  I'm at 8-1/2 years and glad to still be waiting.  Sorry you have to wait so long for your results but it sounds like you have learned how to deal with that.  At my last MRI in November of 2009 (after waiting two years), I was at first dismayed when told I had a 1 mm growth but then remembered the rule of "technical differences" plus the neuroradiologist informed me that their machines had been upgraded.  I will return to MRI's every year for the next one but without any overt increase in symptoms, I have largely gone on with my life.  My both parents have been diagnosed with Alzheimer's and have shown a decline plus my hubby (in the past 6 years) has undergone two craniotomies and Cyberknife treatment for a meningioma that keeps regrowing.  The pathology showed it to be benign but a grade 2 which is more atypical.  So I have had challenges to keep me otherwise busy 

I am hoping that you get good results and please keep us posted.  I want to keep racing after you for a long time or are you racing after me 
Sheryl

[Mickey]

Hello! Here is hoping that all our next your next mri`s come in good. Keeping the faith, Mickey

[Derek]

Sheryl / Mickey...

Thanks for your posts and good wishes.

Sheryl, great to know that you are still my long-term sparring partner in the W & W routine....incredible that we are now into our 9th year since diagnosis and hopefully we will both be able to celebrate that 10th anniversary milestone! I feel sure that your next MRI result will indicate that the alleged 1mm increase was a mere technical blip and that 'normal service' has been restored. You sure deserve some good fortune with all the health problems that you and your better half have had to contend with not least the awful diagnosis of both your parents which I know from personal experience, will be extremely stressful for both of you in the caring role. My thoughts and best wishes to you and your hubby.

Derek

[Derek]

Re my earlier post relevant to the therapeuitic benefits of singing... you may find the following research studies are of interest with regard to maintaining a good standard of physical and mental health, particularly so when in the long-term 'watch and wait' mode conservative management of the acoustic neuroma condition:

Gus Cohen of George Washington University, tracked a senior singers chorale in Arlington, Virginia and found that the singers suffered less depression, made fewer doctors visits and took less medications compared with non-singers.

Further research by Prof. Graham Welch of the International Music Education Research Centre established that people who sing are healthier than those who don't based upon the following criteria:

* Singing releases endorphins into your system and makes you feel energised and uplifted

* Singing gives the lungs a workout

* Singing tones abdominal  and intercostal muscles, tones the diaphragm and stimulates circulation

* Singing makes us breathe more deeply than many forms of strenuous exercise so we take in more oxygen, improve aerobatic capacity and experience a release of muscle tension

*Most importantly, long-term health benefits of regular singing are well established and include the offset of dementia and Alzheimer's disease.

I have recently completed a beginners singing course and intend to join a choral group in my area as I have already experienced an improvement in my overall physical and mental health. This has to be a great way of taking your mind off the AN whilst providing a high degree of personal satisfaction particularly so when performing an activity requiring an acute sense of pitch and tone with only one fully functioning ear!

I can highly recommend it...go on give it a try.

Perhaps there other ANers who obtain similar health benefits from other activities and which may be of interest to us and worthy of adopting?

Regards

Derek