Author Topic: Watch and Wait is Very Confusing  (Read 26063 times)

ANGuy

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Re: Watch and Wait is Very Confusing
« Reply #30 on: April 01, 2016, 04:50:38 pm »
Check out Lloyd Burrel's store.  He actually sells a bra that contains no wire so as to protect the user's chest from EMF.  He also sells foil cloth to line rooms with to protect the occupants from EMF's.  We are talking tin foil hat here folks, literally.

http://www.electricsense.com/emf-protection-store/
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.

PaulW

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Re: Watch and Wait is Very Confusing
« Reply #31 on: April 01, 2016, 05:53:51 pm »
I think it is funny that some people buy special shielding cases for their mobile phone. Sad thing is that they dont work and expose you to more radiation. Mobile phones actually negotiate their transmit power. if you have a good signal they emit very little radiation. The further you are from a tower the higher the transmit power will be. So wrap your phone in metal, and the signal gets worse... so the phone bumps up the power to compensate.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

Emmaline

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Re: Watch and Wait is Very Confusing
« Reply #32 on: April 01, 2016, 06:58:13 pm »
Hi PaulW,

Quote
Mobile phones emit non ionising radiation... Ie it's not the right frequency or power to knock electrons out of orbit, causing unwanted chemical reactions.. Like breaking DNA

I realize non-ionizing radiation, the kind found in cell phones, can't move -- or remove -- an electron from an atom, but the oncologist I periodically speak with thinks it's too early to tell what kind of damage can be done when an electromagnetic field is glued to one's ear day in and day out. Who knows what other changes can be taking place on one's skin, or inside one's head. I don't know how anyone can be so sure whether cell phones are harmless or not, as they haven't been around very long at all. Again, it took eighty years and then some -- close to a century!! -- before a medical warning was issued to smokers.

BTW, your AN was very small, not even a centimeter. I didn't realize a tumor so small could fill up an IAC, or even cause symptoms. Wow! That's scary. Glad the Cyber worked out.
56-year-old female: diagnosed August 2015 with a 1.2cm x 1.2cm x 1.4 acoustic neuroma; second MRI Feb 2016 showed axial measurement of 1.3cm x 1.3cm. Neuro-radiologist said size difference due to margin of error, but I still wonder if it grew.

ANGuy

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Re: Watch and Wait is Very Confusing
« Reply #33 on: April 01, 2016, 08:36:09 pm »
The cigarette analogy is a poor one.  It didn't take 80 years to determine that cigarettes caused serious health issues.  They were known long before that.  The surgeon general ordering a warning on packaging was a political issue, not one of science.  Look at marijuana today, it is being sold BY THE GOVERNMENT of some states, the same states that ban tobacco use, and there are no warnings on the packaging.  In fact, there isn't even packaging in some cases, it's sold in baked goods etc.

So, MJ smoke causes the same health issues as tobacco smoke, yet no warning.  This is because of political issues, not a disagreement in the scientific community.

As to your point about how anyone can say that EMF's don't cause health issues, there have been 25 THOUSAND published articles regarding this and the best the WHO can come up with, and this was in your latest CCN story that you linked, is that MAYBE EMF's cause cancer at the same rate as PICKLED VEGETABLES!  I'm not joking, that is the closest the WHO could come up with a link, pickled vegetables.  Skip the kimchi and you'll be fine!
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.

CHD63

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Re: Watch and Wait is Very Confusing
« Reply #34 on: April 02, 2016, 07:59:08 am »
Dear All .....

This thread is now going off track of "Watch and Wait is Very Confusing," which was the initial post.  If you wish to continue discussing cell phones/radiation/etc., please start a new thread in the AN Community section.

..... back on topic now.

Thanks.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Emmaline

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Re: Watch and Wait is Very Confusing
« Reply #35 on: April 13, 2016, 11:46:01 am »
Hi Clarice,
Good point about getting off track, so returning to the original topic: I am confused about debulking versus total tumor removal. During Watch and Wait, my hope is that the tumor will never grow and never cause hearing loss during my lifetime, which is probably a pipe dream, but I don't really know; that is, I wonder in what percentage of cases those two possibilities occur in people in their fifties. More important, if I continue with Watch and Wait and then the tumor grows in such a way that total removal becomes too risky, what are the potential downsides of debulking? For example, if part of the tumor is left, does that automatically mean I'll need radiation or that it'll continue to grow so another surgery becomes necessary? What's the probability of either happening?

Can debulking further slow the growth of this slow-growing tumor, or can it cause accelerated growth?

Essentially, what are the advantages and disadvantages of debulking the tumor?
Thanks
« Last Edit: April 13, 2016, 01:49:44 pm by Emmaline »
56-year-old female: diagnosed August 2015 with a 1.2cm x 1.2cm x 1.4 acoustic neuroma; second MRI Feb 2016 showed axial measurement of 1.3cm x 1.3cm. Neuro-radiologist said size difference due to margin of error, but I still wonder if it grew.

rupert

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Re: Watch and Wait is Very Confusing
« Reply #36 on: April 13, 2016, 03:38:23 pm »
    Some tumors are just too big to be removed at one time.  Your head would be opened up for too long and you'd be under anesthesia way too long.  Debulking,  almost always happens in that case and a second surgery or radiation is used to finish the job.   Bear in mind, it is a common practice among many surgeons to leave a sliver of the tumor no matter what the size.   It is then  either just monitored or radiated.  The reasoning is so that they can stay clear of the nerves with less chance of cutting them or irritating them.  For a total removal they normally would cut the nerve at the source of the tumor thus much less chance of it ever growing back.  However,  your balance and hearing nerve although separate are almost one so, hearing is gone also.  Sometimes they are able to peel the tumor off the nerve but, keep in mind that damage to the nerves may have already happened and be irreversible. Also,  that the tumor is growing on the cells on the sheath of those nerves so there is still a chance of regrowth.   Chances and odds of anything are anybody's guess as you know individual results may vary.

Emmaline

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Re: Watch and Wait is Very Confusing
« Reply #37 on: April 13, 2016, 10:39:40 pm »
Hi Rupert,
I'm surprised about the length of surgery being a factor, as people are under anesthesia for 12 hours at a time, but maybe you're talking about an even longer period. After Watch and Wait -- I'm assuming it'll come to an end with inevitable tumor growth -- I'm opting for surgery to avoid radiation, so it's a disconcerting to think I'll have to undergo a zapping regardless, but I guess a smaller tumor means less radiation.

56-year-old female: diagnosed August 2015 with a 1.2cm x 1.2cm x 1.4 acoustic neuroma; second MRI Feb 2016 showed axial measurement of 1.3cm x 1.3cm. Neuro-radiologist said size difference due to margin of error, but I still wonder if it grew.

michellef08

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Re: Watch and Wait is Very Confusing
« Reply #38 on: April 14, 2016, 11:41:16 am »
I don't think you should automatically assume you will have to have radiation after your surgery. Although it is a possibility, many of us didn't have to.

I assume each surgeon has their own risk tolerance based on the individual situation. So many factors go into it: what are the patients priorities (hearing vs facial nerve preservation vs total tumor removal), how skilled the surgeon is at taking tumors off of each nerve, how the tumor is growing on/around each nerve. In my surgery - the balance nerve was cut, not for total tumor removal, but  because it's easier for your brain to re-adjust to one fully functioning balance nerve from the other side - rather than risk getting mixed signals from an impaired balance nerve (either previously from the tumor, or from surgery). So as I understand it, the only reason a sliver would be left is if the surgeon doesn't feel comfortable of their chances of fully removing the tumor without damaging the facial nerve.

Also - I know you had concerns earlier about preserving hearing, and it can be done! I had only lost about 10% of my hearing pre-op, and that same level of hearing was preserved post-op! So it is definitely a risk, but not a given that you will lose your hearing.
« Last Edit: April 14, 2016, 11:47:08 am by michellef08 »
Diagnosed Dec 2012: AN 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!! Co-leader of the Washington, DC ANA support group since 2016.

Emmaline

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Re: Watch and Wait is Very Confusing
« Reply #39 on: April 15, 2016, 02:42:21 am »
Hi Michelle,
Thanks for your response: it gives hope as far as hearing preservation, though I'm still uncertain as to whether your whole tumor was removed or only part. Interesting that your doctors excised your whole balance nerve for better adjustment.


Quote
Diagnosed Dec 2012: AN right side 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Friedman/Schwartz on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!!
Did you have surgery because your tumor grew within that five-month stretch, from December to April? I ask because a tumor at 1.4cm is considered relatively small and your symptoms were minimal.
I also wonder if Watch & Wait automatically means unilateral hearing loss after 10 years or more, even if one's tumor never grows.
Thanks,
Emmaline


« Last Edit: April 15, 2016, 06:01:16 am by Emmaline »
56-year-old female: diagnosed August 2015 with a 1.2cm x 1.2cm x 1.4 acoustic neuroma; second MRI Feb 2016 showed axial measurement of 1.3cm x 1.3cm. Neuro-radiologist said size difference due to margin of error, but I still wonder if it grew.

michellef08

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Re: Watch and Wait is Very Confusing
« Reply #40 on: April 15, 2016, 07:44:46 am »
My surgeons stated, and my post-op MRI confirmed that they removed my entire tumor!
Diagnosed Dec 2012: AN 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!! Co-leader of the Washington, DC ANA support group since 2016.

Emmaline

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Re: Watch and Wait is Very Confusing
« Reply #41 on: April 16, 2016, 07:41:04 am »
Michelle,
My bad -- I see now that the info was in your profile. Thanks.
Emmaline
56-year-old female: diagnosed August 2015 with a 1.2cm x 1.2cm x 1.4 acoustic neuroma; second MRI Feb 2016 showed axial measurement of 1.3cm x 1.3cm. Neuro-radiologist said size difference due to margin of error, but I still wonder if it grew.