Top Tips For The 'Watch & Wait' Brigade!

[Derek]

Hi all...

I have just been reading an article which reported that large dozes of vitamin B may assist in preventing the onset of Alzheimers disease. More interestingly perhaps, for those of us who wish to remain in the 'watch and wait' mode, the article also indicated that the human brain shrinks by 0.5% each year from the age of 60. This made me wonder whether there is in fact any correlation with the perceived myth that some acoustic neuromas may self reduce in size as we age. From a personal perspective, I am now 66 years of age so according to the stats my brain will have shrunk by 3% over the past 6 years and I have indeed had a reduction in the size of my AN over that period.

Whilst it is regretful that us 'oldies' have to lose an annual 0.5% of our brain volume mass it will be a most welcome side effect if the AN also suffers a corresponding loss!

Regards

Derek

[Mickey]

Interesting stuff Derek! It all makes sense to me especially just gettin  into my 60's. If I get to 90 1/3 of my brain gone? Geez! thats the bad part haha! If the AN shrinks with it I`ll take it and by then that will be sufficient to operate a 90 year old body. As for the Vitimin and mineral and certain other natural substances, I`m a big fan. Don`t forget the Xercise! Best wishes, Mickey

[rm516]

May be too early or statistically insignificance but the 6 month MRI shows decrease of 0.2 cm from the previous study. My hearing has IMPROVED.
Current AN or round meningioma diameter is 2.5 cm from 2.7 cm 6 months ago. Whatever, thanks god it's not growing !
Mickey/Darek, I have been " trying" to follow your protocols of vitamins, supplements plus walking.
The only other additional supplement has been Super fruit Formula consisting of Goji & Noni (recommended in this forum)
Next 6 months will show the real trend..

[Derek]

Hi there 'rm'...

Great news for you...an apparent decrease in the size of your AN plus improvement in your hearing loss! Whilst these are still early days for you re your diagnosis was only 6 monhs ago and MRI imaging results can vary slightly due to technical aspects etc, nevertheless, any positive results such as yours are always welcome and what we all strive for. It is  good to know that you are attempting to follow the 'Top Tips' regime and your good news will undoubtedly spur you on to continue the good work. Do keep us updated with your progress.

Best Regards

Derek

[Mickey]

Great News! Lets keep on doing what you have been doing and hope for more good things to come. This is very inspiring for all us hear on the W+W Brigade.  Best wishes, Mickey

[Derek]

Hi all...

Many of us in W & W have total / part hearing loss on the affected side and it is very important that we take great care of the 'good' ear via the obvious regimes of cleanliness and avoidance of excessive noisy environments etc but particularaly so with regard to the ageing pocess so, another top tip....

A recent study conducted in Australia known as the Blue Mountains Hearing Study whereby 2,956 men and women were monitored with regard to dietary lifstyles etc concluded that in those over 50 years of age who consumed 2 x servings of fish per week, hearing loss was reduced by a staggering 42% attibutable to omega-3 polyunsaturated fatty acids. Definitely worth putting fish on your menu!

Regards

Derek

[LisaM]

Derek!

Hallelujah!  I just read this whole thread!  What an inspiration!  I just got diagnosed at 50 with an AN, seemingly smaller than yours (originally) Derek.  How old were you when diagnosed, 58?  Everytime I think about surgery and radiation it just doesn't feel right and I can't imagine it.  I'm going to give this next 6 months my best shot at doing a major overhaul on eliminating stress and doing more to be healthy. Drinking more water was first instinct!  I have a four year old and I have to stay young for her anyway!  Thanks so much for staying with this and reporting back!  You have totally inspired me!

C'est moi,
LisaM

BTW... very interesting correlation stated by Sheryl (?) with regards to estrogen... in my reading on this forum as well as on other sites I found it interesting that women who were in their third trimesters of pregnancy were diagnosed with very large ANs... I too feel there is some hormonal connection...

[Derek]

Hi there Lisa!...

So sorry to learn of your recent AN diagnosis but congrats upon finding this amazing website which, as you are now aware, is a unique resource where knowledgeable folk will offer practical advice and guidance from a very personal perspective.

Being diagnosed at 50 years of age may well be in your favour Lisa as there is a theory that as we age the growth rate of the AN can stabilize or even, as in my case, reduce. I certainly hope that is the situation relevant to yourself. I was diagnosed 9 years ago when I was 58 and now at 67 I am awaiting the result of my recent MRI scan which will hopefully indicate that I am heading for 10 years in the 'watch & wait' mode.

I have reviewed your previous posts in order to fully appreciate your AN antecedence and in my opinion you present as a very self disciplined individual who is prepared to undertake maximum research and review all available treatment options prior to making that all important ultimate decision of treatment intervention or conservative management (watch & wait). You also have a great sense of humour and logical approach to your situation and therefore appear to have the right temperament for continuing in 'watch & wait' notwithstanding that your next MRI scan and consequent medical advice affords you that choice. I also note that you have a 4 years old daughter which is a major factor in your decision making process. Coincidentally, my wife was of a similar age to yourself when she had our youngest daughter so I can empathise with your situation!

I greatly appreciate your kind comments relative to my previous posts in this thread particularly so if they have been of benefit to you in your ongoing deliberations. Be assured LIsa that whatever your final decision is, it will be the right one for you.

Best Wishes

Derek


 

[suboo73]

Hi LisaM!

I just read your post on this thread and wanted to stop by and say hello!
Sorry you had to join our exclusive club, but.....WELCOME!

I am here with my sister, Bigsister and we are both in W & W mode.
Yes - i too believe that being 50+ years old has its advantages, so will continue in W & W as long as possible.

Take care and keep in touch.

Sue O.

[nftwoed]

Hi;
  Just a thought re, watch and wait ( conservative management )... If you are pretty young, say, under 35, please think about the logical outcome of many ANs during the course of a life time ( say, 80 years? ) before the auditory nerve is extensively invaded.
  The auditory and vestibular nerves are not as resilient as the facial as they are sensory nerves, while the facial is a motor nerve.

[LisaM]

Hello Derek and fellow W&Wers,

Here are two interesting links on DCA (Dichloroacetic acid) which has been shown to shrink cancerous tumors in rats:

http://www.thedcasite.com/dca_safety.html

https://www.youtube.com/watch?v=TeA84udy7hY&feature=player_embedded

It occurs naturally in chlorinated drinking water (could the 2 liters of water per day Derek is drinking be helping to shrink his tumor?)  Not sure what effect DCA has on non-cancerous tumors... does anyone out there in AN land know about this?

C'est moi,
Lisa M

Also posted this in Latest Drug Therapy...

[LisaM]

Derek...

Could you give us (me) the lowdown on your hearing?  How much of it did you lose?  I know that you said at one point it (your hearing and/or tinnitus) improved?  My dilemma with waiting and watching is that I still have very good hearing in my left ear.  I hope to determine next week what my chances are of saving it with endoscopic surgery (met with Dr. Shahinian last week and he is my man for surgery).  From what I gather my hearing could go any day and once the nerve is damaged it does not come back. 

Just started taking a supplement today called Nerve Shield.  Have no idea if it will do me any good, but I like the name!  It's a bunch of B vitamins, folic acid and amino acids.  If I do the surgery the Dr. said that B-12 and folic acid were good to take prior to surgery as they promote healing.  So hopefully I'm protecting my nerves while waiting and watching and at the same time preparing for surgery if need be!

xxoo,
Lisa M

[Sheryl]

Hi Lisa - I haven't been on the board too often but happened to notice my name in your post.

I came to a dead end regarding the estrogen connection but still fully believe there may be some hormonal connection.  Kind of strange that after five years of suppressing my estrogen because of prior breast cancer, that once I stopped the Arimidex my schwannoma (like an AN) should show a very minor (1 mm) increase.  I Googled and researched and even wrote to a highly regarded neurosurgeon in Boston who is doing hormonal research on meningiomas (by the way, my husband has had three regrowths of a "benign" meningioma - two craniotomies and one CyberKnife treatment) - the doc said there has not been any correlation between schwannomas, AN's, and hormones - some evidence of hormones and meningiomas. 

I am at the 9-1/2 year point of W&W with my yearly MRI due in September.  I plan to reach the 10-year point in November and hope to beat Derek - I'm not sure if I'm ahead or behind him!!
Take care,
Sheryl

[Derek]

Hi Lisa...

Many thanks for posting the links relative to DCA...very interesting factual info particularly with regard to drinking water...perhaps those 2 litres per day that I have been regularly knocking back are the 'magic potion'!

With regard to your query about my hearing loss...For a couple of years or so prior to my AN being diagnosed in March 2002 I had problems with ear wax accumulating in both ears causing temporary diminished hearing and a degree of tinitus. Subsequent occasional syringing always rectified the problem. However, the syringing exercise in February 2002 still left diminished hearing on my right side and the subsequent MRI scan in March 2002 diagnosed a 2.5cm AN. My diminished hearing loss became total within a few weeks of diagnosis before I had the opportunity of obtaining medical advice or undertaking research into the various available treatment options including conservative management therefore my circumstances are somewhat different to your present situation whereby you apparently have excellent hearing ability on you affected side which you obviously would wish to retain.

Over the ensuing years my AN has apparently self-reduced to 1.5cm and nature has compensated my initial balance and hearing problems. My single-sided total hearing loss is of no real problem to me whatsoever other than occasionally at a particularly noisy social function whereby I am unable to clearly identify speech directed on my affected side but that is easily remedied via a strategic 180 degrees exercise!  Indeed I am now well able to identify directional sounds / speech and my tinitus is virtually non existent.

Whilst I would obviously prefer to have perfect hearing ability in both ears, I nevertheless would still opt for single-sided hearing loss rather than risk surgical or radiosurgical intervention if I can possibly and safely avoid such action neither of which has any guarantee of preventing hearing loss and also has other well documented attendant risks of morbidity. This of course, is my personal choice and I appreciate that others, including yourself, may not be in total agreement but life is all about uncertainties and calculated risks and gambles so to coin a phrase ' you pays your money and makes your choice'!  

Very best of luck with your ongoing deliberations Lisa and as previously stated, your ultimate decision will be the right one for you.

Sheryl...you are 4 months AHEAD of me.  

Best Regards

Derek

[Derek]

Hi all...

Thought I would share my good news with you. I have just received the results of my annual MRI scan which I had in March this year and I am very pleased to report that everything remains as it was in March 2010 with no changes having occurred. So as I head towards my 10 years 'goal' in the W & W mode next March I really do believe that there is a correlation with my 'Top Tips' regime which I rigidly maintain....together with an element of good luck of course. 

Best Regards

Derek