Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 228629 times)

dragonmama

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #195 on: March 05, 2012, 12:20:42 pm »
Sheryl,

Great news on the no growth!

I was interested to hear you have another lump on the back of your neck, same side. I had a benign tumour in one of my parathyroid glands (removed in 2003), same side as my AN. It was tucked just under my chin - awfully close proximity IYAM. I also have skin tags, moles and a few skin lumps (about 2-3 mm in size) on my body. About 90% of them are on the same side as my AN, mostly clustered along my neck and collar bone. It makes me wonder why they are all clustered in that part of my body.

My acupuncturist (who's also PhD and MD) told me that *all* people have benign/non-cancerous lumps and tumours, usually internally where we can't see them. He says that our bodies are built with a tremendous amount of "back-up" to crucial systems, so these tumours rarely affect any kind of functioning. For example, you can live with only one functional kidney, but we're born with two. So having a lump or two in your kidney's is not going to take away from your health.

It's interesting to think about. Whenever a new mole or skin tag or lump appears, I start off by disliking it and wishing it didn't exist. But eventually I come to accept it, and treat it lovingly, as a natural part of my body. I try to think of my AN in the same way - it's a natural part of me , not some hideous invader.
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

pjb

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #196 on: April 02, 2012, 08:38:50 am »
Hi all...

Just thought it might be useful to learn what activities or regimes we tend to engage in to hopefully assist in prolonging our precious 'watch and wait' status!

I will start the ball rolling with my 'Top Ten Tips' albeit this is my personal routine and is in no way intended to have any scientific basis with regard to treatment of the AN condition...

1. Annual MRI scan & neuro consultation  (regular monitoring is essential..look upon it as part of your routine such as a visit to the dentist or optician)

2. Sensible balanced diet with plenty fresh fruit, veg and oily fish  (good for all aspects of keeping healthy)

3. Drink at least 2 litres of water each day (essential part of maintaining good health)

4. Brisk 4 miles daily walk over varied terrain  (assists in maintaining good balance)

5. Daily cycling / motor cycling  (assists with balance and coordination)

6. No smoking  (a MUST for assisting with overall good health)

7. Alcohol in moderation  (within acceptible approved guidelines)

8. Complete rest of 10 - 20 minutes during the day with eyes closed and feet raised  (Assists in reducing stress)

9. Regular check on ears ( build up of wax can have a marked affect upon hearing impairment...syringing may be required to maintain maximum performance (particularly in the unaffected ear) and per Dr Medbery on the CKPSG 'site, it is a completely safe procedure for those with AN)

10. Engage in a passtime or hobby (keeps the mind off the 'little bugger')

 There may well be an element of psychology involved but this regime has certainly worked for me over the 5+ years since diagnosis. My last MRI scan indicated a reduction in the size of my AN and whilst it was only by an insignificant 1mm it was nevertheless a tremendous morale booster and incentive to continue with the 'watch and wait' routine.

Derek

Thank you for that I am now in the W & W mode did have surgery and was left with small tumor (it should not have been left) so that is why the mental part of this is stopping me from so many of your top 10 not only physically but mentally knowing it is still there .. Great advice but yet I do not see any mention of vitamins I started more as a recommendation from another who is on the W&W site and also it has been over 5 years for him as well.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #197 on: April 02, 2012, 04:28:05 pm »
Hi pjb...

My 'Top ten Tips' was started some 5 years ago and has been added to over the ensuing years by various contributors including 'Mickey' who I believe introduced the aspect of vitamins. I personally have never added them into my diet.

Sorry to learn that some of the tumour remained following your excision and it is of course down to the individual as to how we accept that the tumour is an unwelcome inhabitant. Do try and come to terms with your situation and use the 'Top Ten Tips' regime as a foundation to successfully deal with your AN hopefully stabilising it.

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.

pjb

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #198 on: April 03, 2012, 09:35:44 am »
Hi pjb...

My 'Top ten Tips' was started some 5 years ago and has been added to over the ensuing years by various contributors including 'Mickey' who I believe introduced the aspect of vitamins. I personally have never added them into my diet.

Sorry to learn that some of the tumour remained following your excision and it is of course down to the individual as to how we accept that the tumour is an unwelcome inhabitant. Do try and come to terms with your situation and use the 'Top Ten Tips' regime as a foundation to successfully deal with your AN hopefully stabilising it.

Best Regards

Derek

Derek thank you for your response I will love to follow those top 10 once I can drag my body off the couch so grateful for all these sites such a wealth of information and to know that we are not alone.. I have tried adding some vitamins and just waiting for my upcoming appointment with the doctor should be getting another MRI to see if it has grown..I have been feeling really lousy past few weeks so just praying it is not because of any growth.

Good luck to you with your approach it seems to be working for you and yes for Mickey as well..

Best Wishes
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

millie

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #199 on: April 04, 2012, 08:19:39 am »
I have read somewhere that sometimes doctors leave some of the tumor; sometimes it grows, sometimes it does not.  Right now, get stronger and try to stay positive.  I am trying to do that although with all the noise in my earand fullness in my left head, I worry it is growing and causing the commotion.  Occasional dizziness.  But I am raking leaves, doing my mom's meds, babysitting the grandkids and then listening to my body and resting when I need to.  And reading The Happiness Project (self-help book)
One day at a time!  It will get better. Hopefully.  Millie

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #200 on: April 04, 2012, 10:54:23 pm »
For whatever it's worth... reading this thread gave me the courage to wait and watch.  Thank you Derek for staring it! This past January I was having a lot of tinnitus and fullness in my ear and thought for sure my next MRI would reveal a bigger tumor. 

Thankfully I was wrong, the MRI February 1st revealed a reduction in tumor size. 

Curcumin, holy basil, reservatrol and honokiol are my favorite supplements/vitamins.

Be well W&Wers!
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!)

pjb

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #201 on: April 05, 2012, 07:15:32 am »
I have read somewhere that sometimes doctors leave some of the tumor; sometimes it grows, sometimes it does not.  Right now, get stronger and try to stay positive.  I am trying to do that although with all the noise in my earand fullness in my left head, I worry it is growing and causing the commotion.  Occasional dizziness.  But I am raking leaves, doing my mom's meds, babysitting the grandkids and then listening to my body and resting when I need to.  And reading The Happiness Project (self-help book)
One day at a time!  It will get better. Hopefully.  Millie

Yes Millie surgeons do leave some behind but they tell you I am upset because mine lied and said it was all gone and after the 1 year MRI, I saw something and questioned them that is when they came clean but did not say why, I could have accepted it if they were forthright from day one. Now I went to a new doctor and he said that there was no reason they should have not gotten it all in the location it was so that is why I cannot stress enough to make sure people go with a GREAT team of surgeons and if I can help just one I would be so happy.

Best Wishes,

« Last Edit: April 05, 2012, 07:30:16 am by pjb »
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

pjb

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #202 on: April 05, 2012, 07:16:46 am »
For whatever it's worth... reading this thread gave me the courage to wait and watch.  Thank you Derek for staring it! This past January I was having a lot of tinnitus and fullness in my ear and thought for sure my next MRI would reveal a bigger tumor. 

Thankfully I was wrong, the MRI February 1st revealed a reduction in tumor size. 

Curcumin, holy basil, reservatrol and honokiol are my favorite supplements/vitamins.

Be well W&Wers!

Thank you I am on the reservatrol but never heard of the other 3 have to look into that.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

dragonmama

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #203 on: April 05, 2012, 10:23:52 am »
Curcumin, holy basil, reservatrol and honokiol are my favorite supplements/vitamins.

Be well W&Wers!

Ooooo - interesting! I haven't heard of holy basil, reservatrol or honokiol! I'm on turmeric and thought of using curcumin but from what I read it seemed like the two were kind of interchangeable. Off to find out more about the other three... ;)
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #204 on: April 05, 2012, 10:44:21 am »
Here is my top 12 list (inspired by Derek) for anyone who may be interested:

1. May 2011 - Aggressive acupuncture treatments 3 times per week for 3 months with about 30 needles and as much electricity as I could take.

NOTE: Acupuncture treatments are only as good as your acupuncturist.  The acupuncturist I found had successfully treated an infected cyst in the inner ear for a patient and also a neuroma on a woman's foot.  I was very disappointed when after 3 months of treatments the tumor had not changed and was the same size but the acupuncture may have had a delayed effect.  The acupuncturist had me change my diet (see below).

2. I stopped using any kind of wireless electrical device next to my head, cell phone, ipod, cordless telephone, etc. (I used a cordless headset for over 15 years on the AN side, left)

3.  I eliminated all wheat and dairy from my diet last May (2011) and I limited my intake of sodium and sugar to almost none of either substance.

4.  I started drinking more water.  I try to drink at least 64 ounces per day.

5. I began taking curcumin (concentrated turmeric) .  In the beginning I took about 3000 milligrams per day for about 5 days due to sudden hearing loss.  Now I take 1000 milligrams per day.  For the curcumin to be absorbed properly you need to heat it with fat (olive oil, coconut oil, etc) and black pepper ( I can send links with more info on this if you are interested)

6.  I took reservatrol and drank red wine daily for about 6 months

7. I exercised regularly and did kundalini yoga.  Kundalini yoga includes a lot of chanting and the vibrations of sound have a very healing effect on the brain and nervous system.  Kundalini also includes meditation which is very healing.  I do it almost everyday.

8.  I took Holy Basil to reduce cortisol levels

9.  I had some friends that did prayer circles.  I also attended a healing group of Taiwanese healers two times.

10.  I stopped calling the tumor "My tumor" and did not take ownership if it.  I just called it "the" tumor found in my head.

11.  I stopped drinking coffee and started drinking green tea, only one cup per day

12. Started taking (pure) Honokiol  2 capsules per day in January 2012

My theory for the tumor found in my head is that it was the result of stress and a mixture of cortisol, estrogen and adrenaline.  The acupuncturist likened it to a swollen nerve.  So, the approach was to reduce inflammation (western doctors describe ANs as an overgrowth of schwannoma cells).  I think eliminating wheat and dairy had a big role in reducing size.  Wheat, dairy and sugar promote inflammation in the body.  I recently spoke with a Harvard educated cardiologist who agrees that wheat does strange things to our brains.  Wheat is somewhat of a neuro-toxin.

Other things to consider;  I had a  baby at age 45.  A time when my estrogen should have been in decline, it increased tremendously.  Now my estrogen is much lower.  I mention this because so many women are diagnosed with ANs in their 3rd trimester of pregnancy so I feel estrogen in my case had something to do with the AN.

So many people have surgery and/or radiation only to have these tumors grow back.  This suggests that these tumors are caused by something systemic that needs addressing.  You need to follow your gut, listen to your body.  I was so confused about what to do when first diagnosed.  I had medical doctors telling me one thing and alternative doctors telling something else.  Three different acupuncturists had 3 different approaches!  In July of last year I decided that I needed to follow my own path to healing.  I read everything I could find and decided which doctors felt right and which ones didn't.

Best wishes and good 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!)

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #205 on: April 05, 2012, 11:56:16 am »
Way to go Lisa! I`m with you on everything said... I`ll incorporate honokoil into the picture, TY. Going into 5th year now and stable and feeling good. W+W dosn`t mean sit back and do nothing but just the opposite of doing all you can to make changes which can help yourself to get and feel better. Best wishes, Mickey

dragonmama

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #206 on: April 06, 2012, 09:01:23 am »
Love it Lisa! I'm doing some of the same things (acupuncture, turmeric, supplements, changed diet)but won't know if they're working until I get the results of my next MRI (booked for Easter Sunday).

I've been wondering about women's hormones as well. I was breastfeeding my second daughter when I was diagnosed and I've had it in my mind that the human growth hormone women produce for their babies when pregnant and nursing could have an effect on an AN. I am sure stress played a role in it too - adrenaline and cortisol especially - as we'd moved cross-country to be near aging parents, and I'd just cared for my parents as my dad went through open heart surgery. That was the most stressful 2 months of my life - what with driving 3 hrs a day to be with my dad in the hospital and caring for my mother (who has very limited mobility and needs a caretaker), and looking after my own children (who are homeschooled and had to come with me)all at the same time. I remember thinking I was going to break if someone didn't provide me with some support - my hubby had to stay at home (1.5 hrs away) to work and my siblings were 4.5 hrs away occupied with their jobs and kids.

As people have complained with their AN surgery - my parent's friends all magically disappeared during this stressful time. Even my aunts and uncles didn't visit my dad. The lone support I got was from a friend of my parents who lived in the same city where my dad had his surgery - he was so amazing and visited my dad every day and connected with me by phone to make sure we visited at different times of the day so my dad would have someone with him for more hours. I will bless that man till the day I die.  :)

I think of my AN differently from you. It is part of me, created by me, and I want to love and accept it in just the same way I love and accept the scars on my body that come from life experiences (like the scar on my neck from my parathyroidectomy that I started off recoiling from and hating, but have grown to accept and direct healing energy toward because it is part of what makes me me). I don't want to think of it as "other" or an alien within me, because then I'm more prone to anger and fear and stressful emotions, and more prone to the idea that I have to wage some kind of war on it. It is part of me and I want to feel positive, nurturing, healing emotions tpward it - it is a part of me that is hurt, but can heal.

Gael
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

dragonmama

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #207 on: April 24, 2012, 01:18:05 pm »
Woot! Woot! I just got the call from my neurosurgeon's office - the follow-up MRI to see if my little critter is growing showed no change from the diagnostic MRI 9 months ago.

I'm officially on watch and wait. Next MRI will be scheduled for a year from now. I'm relieved and elated and I think it will be a while before this good news truly sinks in!  ;D

Gael
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #208 on: April 24, 2012, 02:40:30 pm »
Fantastic news!!!  Enjoy your elation... it's good for your brain!  So happy for you!
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

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #209 on: April 25, 2012, 04:28:23 am »
Hi there Gael...

Great news for you and us...same result at your next MRI scan please! ;D

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.