Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 297224 times)

LisaM

  • Full Member
  • ***
  • Posts: 177
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #285 on: December 14, 2013, 04:27:24 pm »
Thanks for this Derek.  Interesting fact about the hair cells.  What an amazing design our bodies have.  I've always wondered if those little hair cells get damaged during radiation and this is what leads to delayed hearing loss with this type of AN treatment.  I imagine those little hairs help our balance too!

Derek, if I remember correctly, isn't singing on your original top ten list???  Singing has amazing healing properties.   So... get out there and sing this holiday season! 

Happy holidays to all and the most excellent of health.

Lisa M
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!)

Derek

  • Hero Member
  • *****
  • Posts: 557
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #286 on: December 14, 2013, 05:02:57 pm »
Hi there Lisa M...

Yes...singing has been included as a 'top tip' and you are correct about the many physical and psychological health benefits. Being an aerobic activity that increases oxygenation in the blood stream it exercises major muscle groups within the upper body including the heart. Singing also reduces stress and produces a sense of emotional wellbeing especially when performed in a group when it increases a sense of community, belonging and shared endeavour. I can unreservedly recommend it irrespective, like me, you only have one fully functioning ear! Fancy a duet Lisa  ;D

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.

Sheryl

  • Sr. Member
  • ****
  • Posts: 460
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #287 on: December 15, 2013, 07:47:29 pm »
WOW - just realized this thread was started 6-1/2 years ago!!  Thank you Derek. 
Hope everyone has a happy and HEALTHY holiday season including a wonderful 2014.
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

MG

  • Full Member
  • ***
  • Posts: 178
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #288 on: December 16, 2013, 01:15:50 pm »
Singing is good? That's great news! ;D I sing a long with"You Tube" songs and have a good time doing it. With my little bit of hearing loss I am not sure I'm in tune but who the heck cares! Thanks Derek for the heads up.

Happy Holidays to everyone !
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

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #289 on: January 01, 2014, 12:14:51 pm »
HAPPY NEW YEAR!  Going into my 7th year W+W now and doing very good....Wishing my AN family the best! Mickey

GaleWynne

  • New Member
  • *
  • Posts: 17
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #290 on: February 21, 2014, 02:27:23 pm »
I am finally going to add this as my tips….

Staying hydrated

Weekly 90 min massages, with focus on facial muscles and circulation - started in January 2012 - note my MRI results….

BiMonthly Raindrop Massage - can be controversial but I have not had any issues with it - started in January 2012 - did monthly ones before my MRI Results in mid 2012

Helichrysum essential oil - inhale periodically, sometimes put behind the ear

Frankincense essential oil - inhale periodically, sometimes put behind ear

**Don't go crazy using essential oils, use them with caution. I am not a doctor or a medical professional. All I know is - my AN has shrunk.  My MRIs have been done in a 3T machine read by the same person. The darn thing went from under at 2MM to over a 2MM (this was in four month period in 2011) then down to 2MM (in July 2012) to under at 2MM (in July 2013).

I can't prove a darn thing. All I know is that I am feeling better, my visual problems have gotten better etc. Maybe some of it was anxiety..but I know it wasn't all anxiety.

My next MRI is July 2014.

The brand of essential oils that I use is Young Living (I just add this here since someone may ask).  I am a "distributor" BUT only for my own personal use (I wanted to get the discount).  So please do not contact me in terms of getting oils, that is not my purpose at all.  You can go to their website or research oils on your own.  Just again - be cautious.  Find a good massage therapist. 

I have held off for a long time posting about this since - I know it seems a little out there.  But I don't want to keep it to myself either since it's been 2 years of using oils  (and I haven't used them on a regular basis over the 2 years... But I did have a lot of use during that period Jan 2012 to July 2012) and my MRIS are showing good results.

Also, I decline all dental X-rays. Period.  I started doing that in 2012 too… my symptom flareup in 2011 seemed to correlate to having a full set of dental X-ray done  a few month prior…but who knows?  again, who knows..but I decline them….my teeth are overall good and I believe the ADA only recommends bite wings once per year.  I just decline them period which makes my dentist perturbed but it's my head, not his.

If anyone wants to discuss these items further you can reach me at galejesse@hotmail.com

GOOD LUCK EVERYONE!!!
Sister 3MM surgically removed 11/2001.
Me - Tinnitus Jan 2011. MRI April 2011 almost 2MM AN.  Symptoms increased June 2011; MRI over 2MM AN July 2011. July 2012 MRI: AN now 2 MM which ties to symptom decline. July 2013 MRI: barely 2MM Aug 2015: STABLE Aug 2017: STABLE Oct 2019: STABLE!

GaleWynne

  • New Member
  • *
  • Posts: 17
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #291 on: February 21, 2014, 02:28:59 pm »
Ooops..my next MRI is July 2015! I don't have to go back for 2 years..and if that one is good, then 4 years….Yippee!
Sister 3MM surgically removed 11/2001.
Me - Tinnitus Jan 2011. MRI April 2011 almost 2MM AN.  Symptoms increased June 2011; MRI over 2MM AN July 2011. July 2012 MRI: AN now 2 MM which ties to symptom decline. July 2013 MRI: barely 2MM Aug 2015: STABLE Aug 2017: STABLE Oct 2019: STABLE!

LisaM

  • Full Member
  • ***
  • Posts: 177
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #292 on: February 27, 2014, 04:22:04 pm »
Interesting...

I too have declined all dental x-rays since the discovery of the AN... hmmmm.  A fellow ANer (not on this forum) just had his wisdom teeth pulled.  He is well into his 50s.  He said that he feels as if some of the fullness in his ear has dissipated since the wisdom teeth came out.  They were very infected.  His dentist mentioned that many people come to him to have their wisdom teeth pulled later in life complaining of hearing problems.  Once the teeth are gone the hearing issues resolve themselves.

Thanks for posting!  Keep shrinking!
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!)

Derek

  • Hero Member
  • *****
  • Posts: 557
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #293 on: March 16, 2014, 03:20:30 pm »
Hi all...

Was expecting my annual MRI scan this month but my trusted consultant has stated that because my AN has shown continual stability and recent further reduction in size, he is arranging for biennial scans. New territory for me as I commence my 13th year in 'W & W' so next MRI is scheduled for March 2015. As always I remain totally focused on maintaining my healthy lifestyle and positive in thought that 'W & W' was the right decision for me. In furtherance of my personal therapy in dealing with the AN condition I intend taking a year out from accessing the ANA site and will post the, hopefully good, results of my next MRI scan during April 2015.

In the interim very best wishes to all fellow ANers, especially my totally committed 'long termer'
'W & W' buddies and please do not hesitate to drop me a PM at any time if I can be of any help or you have any news to share.

Best Regards

Derek
« Last Edit: August 17, 2015, 03:34:32 am by 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.

LisaM

  • Full Member
  • ***
  • Posts: 177
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #294 on: March 16, 2014, 10:01:35 pm »
Have a wonderful ANA vacation Derek!
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!)

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #295 on: March 19, 2014, 06:34:35 pm »
Thanks for starting the W+W Brigade and all the good posts... It has really helped me along the way and will be looking fowards to hear from you again... W+W hopefully forever. Best wishes, Mickey

logitech23

  • New Member
  • *
  • Posts: 3
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #296 on: March 24, 2014, 08:28:49 am »
Great news! Just got my MRI results and the tumor hasn't grown at all. New scan results are much more accurate because it was done in a newer machine that created narrower image slices and I got contrast material injected through the veins. Still very decent hearing on my left ear and no other symptoms. I will continue my W&W journey because I see no value in surgery at the moment. Removing a tumor this size would most likely cause SSD and other possible complications. I am very happy with the results, because I experienced significant paranoia and anxiety before the new MRI was taken.
Thank you for your support.  :)

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #297 on: March 24, 2014, 09:14:43 am »
logitech23 ~

Congratulations! I'm pleased to learn that the MRI showed no growth and that your pre-scan anxiety proved unwarranted (but yet, understandable). 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

bethtretrault

  • Jr. Member
  • **
  • Posts: 99
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #298 on: June 07, 2014, 02:39:23 pm »
What do you all think about eating organic and no added growth hormone dairy and meat. And taking low dose aspirin 2 times per day.  Anyone else doing this? I just had my repeat MRI in May, will have a repeat hearing test in November and if all goes well won't have another MRI til May 2015. I'll do anything if it improves my outcomes, reduces symptoms and stops tumor growth.
beth
12/2013 5mmx4mmx4mm left
tinnitus, w&w
5/2015 7mm-louder tinnitus, occasional dizziness
retro sigmoid 11/2015

Sheryl

  • Sr. Member
  • ****
  • Posts: 460
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #299 on: June 10, 2014, 08:34:05 am »
Beth - if anything, it's good for your overall health.

Keep us posted,
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W