Top Tips For The 'Watch & Wait' Brigade!

[Derek]

Hi Cindu...

Sorry to learn of your diagnosis but so pleased that you found this website which will be of invaluable assistance to you as you commence your AN journey. I assume that your country apparently has limited resources and experience relevant to the treatment and management of acoustic neuromas. In consequence it is vital that you have regular MRI scans and act upon the advice and guidance of a consultant in whom you have complete trust particularly so when deciding on conservative management (W&W).

I was 57 years old when diagnosed and will soon be 71. I continue to enjoy good health in my retirement and have a full and active lifestyle.

Best Regards

Derek

[Mickey]

Hey Cindu! I see you joined the AN club and are lookining into W+W ... I`ve always thought this was a great first step approach on dealing with having a AN.  At 58 I had a similar decision to make with a 1cm AN and tinnitus w/ minimal hearing loss + migranes. I`m 66 now and this treatment (way of life) has worked very well for me also. I`m actually feeling better than when first diognosed (headaches very rare and minimal) everything else stable... Give things a chance and monitor things closely...  Here`s hoping we can always stay on this W+W program watching everything in technology in ways so stay healthy... Best wishes, Mickey

[Cindu]

Hi Pearl,

Thanks for the welcome:) sorry, I'm not comfortable to reveal my country as it could possibly get me identified (based on the AN prevalence rate, there could be less than 50 AN in my country...lol).

Hi Lisa, Derek and Mickey,

Thanks for the assurance. It was indeed frightening initially, I allowed myself to cry over it for the first few days, I'm now more at peace the past few days. I always thought its rather exciting to see how life presents and one of my beliefs is to live life to the fullest regardless what comes my way. I guess this beliefs helps quite a bit with my acceptance of this condition. In addition, I'm mindful about not wanting the tumor to cause more disruption to my life than it should.

I'm rather lucky on the symptoms so far (cross finger) as my hearing is still intact and i do not experience any symptoms currently other than feeling fatigue easily (could be due to my lack of exercise too...lol), having some vacuum feeling in my left ear and occasional sharp pain at my left brain where the tumor is.

I had 2 periods of temporary left facial palsy in 2012 and 2014. The doctors diagnosed them as Bell's palsy initially. After I had the facial palsy in July 2014, I felt persistent stiffness on my left face whenever I'm too tired. The doctor then recommended MRI and this is how I found out.

Other than switching to a healthier lifestyle, I wonder if you guys also reduce your workload? Eg. work less days. My workload is rather stressful for me and I wonder if it will affect my tumor growth, especially now that I aim to reduce the size of my tumor.

[CHD63]

Hi Cindu .....

I want to add my welcome to you, as well.

Since you are from a country where the doctors have seen so few ANs, you might like to know that you can send a copy of your MRI to experienced AN doctors in the US for second (or third, etc.) opinions.  If you would like contact information for some of them, just let us know.

When I was at House Ear Clinic in Los Angeles four years ago, there was a young woman there from Ecuador having her tumor removed so it is not out of the question to go out of your country for treatment if needed.

Many thoughts and prayers.

Clarice

[Derek]

...I continue to maintain my healthy lifestyle and remain totally committed in my self-belief that W&W was the correct decision for me.

I am now subject to biennial MRI scans, my next scan being due in March 2015 and I am hopeful that I will get another good result...


 
[/quote]

HEY! I'M A TEENAGER...AGAIN!!

Just wanted to update you and share my further good news. After having had annual MRI scans for the past 11 years I had my first biennial scan in March this year. I have just received my results today and can happily report that everything is stable with no changes over the last 2 years. I have now clocked up 13 years and 2 months since diagnosis and my next scan is scheduled for my 15th year in 2017 when, hopefully, I can report a similar result.

Best regards to all my W&W pals 

Regards

Derek

[NYLady]

 Derek,

That is amazing and wonderful news.  You have certainly shown us the best face of this condition.  Keep up the good work. 

Best wishes,
NYL

[Sheryl]

Hi Derek - Guess we are still the king and queen of wait and watch.  I, too, just had my annual MRI and found out all is stable.  So, my W&W count now is 13 years and 6 months.  They are allowing me to spread out my MRI's to 18 months or even 24 months as long as symptoms do not appear.  I have had some very minimal growth over the 13-1/2 years but the doctors are not concerned.

So glad to hear your great report and look forward to hearing the same in 2017!!

Sheryl

[Derek]

Hi there NYL & Sheryl...

Many thanks for your good wishes and encouraging comments NYL.

Great news re your recent MRI scan results Sheryl and that you too can now go the biennial route! Time just seems to fly by these days and I cannot believe that I was 57 when diagnosed and here I am heading for 72  . Looking ahead, I have another four biennial MRI scans before my 80th birthday and I have decided that if everything is still stable when I'm 80 then I am going to declare that I have won this battle with the 'little bugger' and may say cheerio to the scanner!

So sorry to note from your post in another thread that your hubby is experiencing such problems with his meningioma condition. I do hope that he will eventually have a positive outcome.

Best Regards

Derek 

[MG]

So happy for you both Derek and Sheryl ! I am ready to have my 3rd MRI. Sure hope it's good news too!

MG

[Derek]

Hi Cathy...

Many thanks for your good wishes and looking forward to some good news from you re your forthcoming scan.

Regards

Derek

[LisaM]

Greetings Derek!  Greetings Cheryl!

So happy to hear your wonderful news!  And I am so grateful to have stumbled upon this thread almost 4 years ago.  You gave me the courage to wait and watch which was absolutely the right decision for me. Here's to the King and Queen of W&W!

Best,
Lisa M

[Sheryl]

Thanks Lisa - W&W isn't for everyone - so glad it's working out for you.
Keep us posted.
Sheryl

[Mickey]

HI Guys.... Glad to hear everybody still doing well.  I have my 2 year mri coming up soon and hope to add more good AN news....  I`ll start  by saying I`m feeling very good and think whatever little ailments I do have are basicly age related.... { 8 yrs. diognosed,  66) Looking for results around a month.  Best wishes, Mickey

[ANGuy]

HI Guys.... Glad to hear everybody still doing well.  I have my 2 year mri coming up soon and hope to add more good AN news....  I`ll start  by saying I`m feeling very good and think whatever little ailments I do have are basicly age related.... { 8 yrs. diognosed,  66) Looking for results around a month.  Best wishes, Mickey

Thanks for bringing up a good point about age.  I find things here and there being different, tired, sore legs, less patience, having less interest in things that excite other people.  But like you, I think much of it is to age.  I'm 48 and far from needing a hole dug, but I am NOT 28 anymore.  If I bang my elbow on the garbage can outside, it hurts for a month instead of a week.  I hear other parents speaking with excitement about vacation destinations at my kids' soccer practices, but I've been to those places, never found most of them fascinating, and am just not that interested in them like a I would have been 20 years ago.  These parents are younger than me, they get excited about things I have done already.  That's not my AN, it's my place in life.

I get up at 0500 and I need a nap after dinner at 1600.  That's not "fatigue", it's called working for a living and not being 19 years old anymore.

[Derek]

I think we all generally agree that a healthy lifestyle goes in tandem with coping with the AN situation particularly when opting for the W&W mode of treatment. In furtherance it is always desirable to avoid being overweight and I thought the following may be of interest. During the last Christmas holiday period I lapsed and over indulged somewhat gaining a few extra unwanted pounds so decided to rectify the matter. It is well documented that sugar is prolific in all sorts of foods and is often the main causation of weight gain. In March I decided to vastly reduce my sugar intake including a total abstinence of biscuits, cakes and confectionery whilst maintaining my otherwise regular healthy eating and moderate exercise regime.

The result has astonished me in that after 2 months I have lost a total of 17 pounds and do feel all the better for it.

Certainly worth a try if you are looking to lose weight with next to no effort!

Regards

Derek