Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 276263 times)

keithmac

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #330 on: May 28, 2015, 08:38:29 am »
I'm not persuaded that weight loss has any special relevance on a website specific to acoustic neuromas, their  management and treatment.  The potential benefits of healthy eating are undisputed but the discussion is more appropriate elsewhere.

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #331 on: May 28, 2015, 12:53:51 pm »
I am not advocating that there is a direct relevance between being overweight and developing an acoustic neuroma per se. The purpose of my post was to merely highlight the fact that consumption of excess sugar can result in unwanted weight gain which can have an adverse affect upon ones health and the simple steps that can be taken to prevent or reverse the situation.

With regard to sugar I cannot over emphasise the health problems that can ensue from over consumption of this commodity. It is well documented in medical journals that the average person consumes approx. half cup of sugar per day which continually upsets the body chemistry causing the inflammatory process to manifest thereby increasing the chances of developing disease. The less sugar we consume results in a corresponding reduction in inflammation. The benefits of this is that we develop a stronger immune system to defend against infections and diseases. One of the scourges of the AN condition is inflammation which aids and abets tumour growth and which is why anti inflammatory steroids are often prescribed to reduce and prevent inflammation around brain tumours. Therefore any advice or action that reduces inflammation must surely be in the interests of those diagnosed with an acoustic neuroma.

I do believe that in the health interests of all who use this website and who are unfortunate enough to have developed an acoustic neuroma condition, that my post is relevant in assisting with the goal of maintaining a healthy lifestyle and in adopting a positive regime with regard to the day to day management of the condition.

Regards

Derek   



Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

keithmac

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #332 on: May 28, 2015, 01:24:28 pm »
I am not advocating that there is a direct relevance between being overweight and developing an acoustic neuroma per se. The purpose of my post was to merely highlight the fact that consumption of excess sugar can result in unwanted weight gain which can have an adverse affect upon ones health and the simple steps that can be taken to prevent or reverse the situation.

With regard to sugar I cannot over emphasise the health problems that can ensue from over consumption of this commodity. It is well documented in medical journals that the average person consumes approx. half cup of sugar per day which continually upsets the body chemistry causing the inflammatory process to manifest thereby increasing the chances of developing disease. The less sugar we consume results in a corresponding reduction in inflammation. The benefits of this is that we develop a stronger immune system to defend against infections and diseases. One of the scourges of the AN condition is inflammation which aids and abets tumour growth and which is why anti inflammatory steroids are often prescribed to reduce and prevent inflammation around brain tumours. Therefore any advice or action that reduces inflammation must surely be in the interests of those diagnosed with an acoustic neuroma.

I do believe that in the health interests of all who use this website and who are unfortunate enough to have developed an acoustic neuroma condition, that my post is relevant in assisting with the goal of maintaining a healthy lifestyle and in adopting a positive regime with regard to the day to day management of the condition.

Regards

Derek   





Are you medically qualified to be able link sugar, inflammatory response and acoustic neuromas to sugar? And/or can you indicate research showing linkage?  If not then it's an unproven supposition.

 Even though the potential benefits of reduced sugar intake and weight on general health are indisputable what evidence is there that acoustic neuroma management, treatment and outcomes are beneficially impacted?


ppearl214

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #333 on: May 28, 2015, 04:43:33 pm »
Hi all,

While I appreciate the comments of the concerns of AN'ers health, as it may pertain to other aspects of their health, I would like to remind everyone that information provided here is based solely on individual research done by AN'ers, while none is medically proven to impact AN's.  AN epidemiology is currently in study via the Yale University study, sanctioned by the ANA.  Until concrete answers are found, nothing is proven to impact AN's unless something is confirmed, which is usually posted on the main ANA site, which can be found at www.anausa.org.

As one that consumes large amounts of sugar (if you have recently seen me, you get it...), this has had no impact on my AN condition.  My AN was treated over 9 years ago via radiation. Until someone tells me that there is a definite correlation, I will still consume sugar.

So, with that said, I remind everyone that individual research done by AN'ers on this site is that... research we have done on our own. We are to respect what one may have found and potentially learn from it. Healthy debates are nice and fine... and once they cross the line, I will step in and put a halt to it. 

Nuff said.

I return you to your HEALTHY debate and remind everyone to stay on track.

thanks.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

MG

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #334 on: June 03, 2015, 05:10:24 am »
Hello,

I got my MRI results back and my AN increased in size by 4 mm which makes it 1.3 cm.  :(  I was hoping for a better outcome but I guess "Tiny" is growing. My hearing is deteriorating also. Now I don't know what to do. I have been on W&W since 2012. Any suggestion from you Watch & Waiters??

MG

Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

ANGuy

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #335 on: June 03, 2015, 04:05:48 pm »
Any suggestion from you Watch & Waiters??

MG

My suggestions is to start thinking in terms of "when" and not "if" regarding treatment.  I'm WW with a similar sized tumor and hoping to put treatment off forever.  Realistically, based on what my Dr says and what my gut says, I won't make it forever.  At some point, I will be in the same boat as you and will have to look at treatment as less of an abstract thing, and more of a concrete reality.

I would factor in your age, how big you think it should get before you treat it, and what time of year etc would be best for you to be laid up if you get traditional surgery.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #336 on: June 04, 2015, 12:15:19 am »
Have you made any changes in your lifestyle since diagnosis?  Did you have your MRI at the same place, same machine, same technician?  How is your hearing deteriorating? Any other symptoms?  Is your life stressful?
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

keithmac

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #337 on: June 04, 2015, 04:07:11 am »
Have you made any changes in your lifestyle since diagnosis?  Did you have your MRI at the same place, same machine, same technician?  How is your hearing deteriorating? Any other symptoms?  Is your life stressful?

in order asked: 
no
yes, yes,  no
haven't noticed any changes in my hearing
no other symptoms
no

MG

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #338 on: June 05, 2015, 01:09:45 pm »
Thanks ANGuy for your comments. I would like to be able to stay on W&W too but just don't know if I should chance it. I am 65 and I am a petite built woman and kind of frail since I discovered my AN. Something tells me not to have surgery. I feel I wouldn't make it. Just a gut instinct. I have a heart issue so I just don't want to put myself through that. I would rather go GK or CK. Oh it's just so hard to know what is best. ::).

LisaM, The answer is no, not the same place on my second MRI . It showed no growth. Went back to the first place this time and it showed growth as I mentioned. My hearing is much worse. Pain is a little worse then last year. I have tinnitus but that's the same. Yes since November I have had stress in my life. Mother -in- law broke her back and then her hip  three months later.  :'(. One heck of a year!

I will post after my appointment. Thanks again for the info.
MG
« Last Edit: June 07, 2015, 04:43:31 pm by MG »
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #339 on: June 05, 2015, 02:00:05 pm »
Thanks ANGuy for your comments. I would like to be able to stay on W&W too but just don't know if I should chance it. I am 65 and I am a petite built woman and kind of frail since I discovered my AN. Something tells me not to have surgery. I feel I wouldn't make it. Just a gut instinct. I have a heart issue so I just don't want to put myself through that. I would rather go GK or CK. Oh it's just so hard to know what is best. ::).

LisaM, The answer is no, not the same place on my second MRI . It showed no growth. Went back to the first place this time and it showed growth as I mentioned. My hearing is much worse. Pain is a little worse then last year. I have tinnitus but that's the same. Yes since November I have had stress in my life. Mother -in- law broke her back and then her hip  three months later.  :'(. One heck of a year!

I post after my appointment. Thanks again for the info.
MG
Hello,

I got my MRI results back and my AN increased in size by 4 mm which makes it 1.3 cm.  :(  I was hoping for a better outcome but I guess "Tiny" is growing. My hearing is deteriorating also. Now I don't know what to do. I have been on W&W since 2012. Any suggestion from you Watch & Waiters??

MG




Hi Cathy...

So sorry to learn of the apparent increase of 4mm which if correct is about double the accepted normal increase of between 1mm and 2mm per annum. However you also have to factor in allowable tolerances relevant to the imaging process of the MRI scanner and the interpretation of the data by the neuroradiologist which can have an affect upon the actual results.

Having regard to the aforementioned aspects together with your present age and health circumstances, I would be inclined to discuss your predicament with your consultant, whose advise you hopefully trust implicitly, and be guided by his professional expertise. Hopefully, as your AN is still relatively small, you may well  be able to have a further scan in a few months and that result will probably assist in establishing whether or not you will be able to continue in W&W.

Best Regards

Derek

Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

MG

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #340 on: June 05, 2015, 03:45:57 pm »
Hi Derek,

I am hoping for the chance to still be on W&W a little while longer and as you mentioned  could have another scan in a few months. I will post again after I speak with my doctor in a few weeks.
Thanks for your post as I always appreciate your input.

Best wishes,

Cathy
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #341 on: June 05, 2015, 11:34:12 pm »
Listen to your gut... as well as your doctor.  You know your body best.  MRIs can fluctuate.   In the meantime drink lots and lots of water.  Simple dehydration can do all kinds of damage in our heads.  Wishing you lots and lots of good health.
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

MG

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #342 on: June 06, 2015, 06:02:00 am »
LisaM , thanks! :)
 
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #343 on: June 23, 2015, 01:28:54 pm »
Hi fellow W+W Brigadersers! I just wanted to report that I got my latest MRI report....  After 2 years eveything is stable (no change) This is going on into my 9th year now and all is good.  I`m happy to encourge a W+W alternitive with all the knowledge here to stay proactive and take this treatment into the future.   Alot of breakthroughs which are helping AN patients in every respect.... Stay on top of things ! God Bless, Mickey

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #344 on: June 23, 2015, 02:56:27 pm »
Hi there Mickey...

Many congrats on your good news and encouragement to those contemplating the W&W treatment option. Well done and long may your situation continue as you head towards your 10th anniversary since diagnosis.

Best Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.