Author Topic: Alternative medicine to teal with AN?  (Read 4742 times)

elena

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Alternative medicine to teal with AN?
« on: January 26, 2009, 01:05:43 pm »

 Hello, and good luck everybody,

 Did anyone try, or knows about any alternative medicine approaches
 to deal with acoustic neuroma?
 My best friend (abroad) recently found that she has a 3.5cm neuroma
 and that she needs surgery. She is 39 years old, has 2 small kids and
 2 old parents that she cares for. Until she finds a hospital that can perform
 surgery (since in her country it cannot be done safely) she would consider
 alternative approaches that would hopefully help shrink the tumor: maybe
 accupuncture treatment, bioenergy, diet? Anybody knows anything
 about such approaches?
 Also, would you happen to know about medical centers in US that would help
 foreign patients that cannot get proper care in their home contries, at least
 with analyzing the tests and MRI images, and advice?
 
 Many-many thanks for any suggestions,
 elena

MAlegant

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Re: Alternative medicine to teal with AN?
« Reply #1 on: January 26, 2009, 01:20:11 pm »
I wish there were an alternative treatment (if there were, we'd all have used it!)  but the best course of action is surgery or radiation.  Her tumor is on the large side so surgery will most likely be the way to go.  I wish her all the best.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

ppearl214

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Re: Alternative medicine to teal with AN?
« Reply #2 on: January 26, 2009, 01:42:47 pm »
Hi elena and welcome.

I'm not sure if you are noting if your friend has an AN or another type of neuroma, but I'll base this on an AN (or, actually, any other kind of neuroma).

Neuroma's are basically (in laymen's terms, roundabout way) overactive cells of the sheath that covers the nerve.  Most "alternatives" do not prevent the overactive growth of the sheath (or schwann) cells.  To my knowledge, there is no tried and true proof of an alternative solution to deal with neuromas.

I know some have tossed around alternatives here, but to my knowledge, none that have been proven effective.

I hope that helps... I hope your friend is ok. where exactly are you all located?

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

elena

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Re: Alternative medicine to teal with AN?
« Reply #3 on: January 26, 2009, 04:05:08 pm »

 Marci, Phyl, thank you very much for your replies and kind reassurance!
 Phyl, my friend lives in Eastern Europe. Accroding to the doctors there her best options for surgery are in France and Israel (France would be much better moneywise). But anyways, any recommendations for a good clinic here or abroad would help. What I am hoping to help her with from here (North California) is finding medical advice based on her images and tests, and what is the best way to deal with the problem before treatment; and thank you so much for your help here!!! Luckily, in spite of the size, the neuroma is not invloving yet the acoustic and facial nerves.

ppearl214

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Re: Alternative medicine to teal with AN?
« Reply #4 on: January 26, 2009, 04:13:27 pm »
Hi elena, glad to help. so, not confirmed that it is an AN or such... all we know is that it is a "neuroma" but not known exactly what kind?  without more details, hard to suggest, but Israel and France are good. So is the UK if she can get there (possible treatment with  NHS?)  Possible Munich as well?

with more details, might be able to give better suggestion. If it is not an AN, then we need to make sure her films and such are in proper hands.

If you are in N. CA, possible Stanford as a good location as well, if she can get Stateside. 

Too many options on too little info. Would need to know more.

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

jerseygirl

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Re: Alternative medicine to teal with AN?
« Reply #5 on: January 26, 2009, 06:25:36 pm »
Hi, Elena,

 The member named HRUSS also lives in Eastern Europe, namely Bulgaria. She had her surgery in Germany. Email her and she will tell you about her experience. She investigated a few US places but found them to be too expensive. The distance was also a factor. Good luck in your search.

            Eve
 
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Tumbleweed

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Re: Alternative medicine to teal with AN?
« Reply #6 on: January 27, 2009, 01:57:08 am »
Hi, Elena:

I tried a holistic approach to treating my AN, really sticking to the program in very disciplined fashion. It failed miserably, so I got CyberKnife treatment. If there is anyone who is inclined to shun Western medicine and try natural medicine, it is me. But I became convinced that natural remedies do not work for this specific illness.

Here is a link to my post detailing my failed program and its outcome:
http://anausa.org/forum/index.php?topic=5782.0

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Mickey

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Re: Alternative medicine to teal with AN?
« Reply #7 on: January 27, 2009, 01:09:00 pm »
I`m not a believer in any magic potients for AN. As a W+W I do feel one thing is that to keep yourself in the highest form you can. Exercise program, The best of nutrition which does include very many supplements of all kinds (homework), Power of prayer and positiveness. The rest is W+W untill the next MRI. With a little luck you may been one who won`t need intervention. In any case if you do need intervention you`ll be in top shape. I guess you can say this for all here post op to have the best chance in healing. I`ve heard alot of good outcomes Thank God, Mickey

elena

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Re: Alternative medicine to teal with AN?
« Reply #8 on: January 27, 2009, 01:26:30 pm »

 Many thanks for all the replies, you all helped us a lot!
 As Phyl says, each case is different and there is not one good solution for everything.
 So we decided to gather all medical data and images and asked for a consultation at
 Stanford, from where we hope to get the best advice on how to proceed. On Eve's
 suggestion we contacted Hrissy, since she had the same dilema on where is the best
 place in Europe to have the treatment; and she was so very generous in giving us all
 the information. My friend will still want to try meantime a holistic regimen, so many
 thanks to Tumbleweed.
 We'll update with the details of her case and the recommendations from Stanford once
 we get them.
 Best wishes and good luck everybody!

Tumbleweed

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Re: Alternative medicine to teal with AN?
« Reply #9 on: January 28, 2009, 02:27:55 am »
Just so my previous post isn't misunderstood:

Although my holistic program failed to halt my tumor's growth (or even slow it), I agree with Mickey that staying as healthy as possible has a positive influence on dealing with an AN and being physically prepared for treatment. I continue to take many supplements (vitamins B, C and E; minerals: manganese, calcium, and magnesium; curcumin; rhodiola rosea extract (for fatigue); anti-inflammatory enzymes (Flavenzym blend and bromelain); etc.), and I eat a very balanced diet almost every day. The days I fall off the wagon, I feel worse. So the supplements and diet must be helping.

So while I don't think there is a natural cure discovered yet for an AN, I do think natural remedies -- used as an adjunct to western medicine -- can help manage the disease.

That said, I encourage your friend, Elena, to try whatever natural remedies she thinks might help her. It is my hope that sooner or later, someone will find the right combination of natural remedies that stops an AN in its tracks and will spread the word to others who come after  us. There is always hope.

Best wishes to all,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08