Author Topic: natural remedies for brain swelling  (Read 5639 times)

tenai98

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natural remedies for brain swelling
« on: August 22, 2016, 10:15:48 am »
On july 27th, I experienced double vision.   I had CK on June 6,7, and 8 th.   The doctor put me on dexamethasone.   8mg a day for a week, then 2mg for a week and then 1 mg for a week.  it was 3 weeks of hell.   Sleep 3 hours and ready to go for the rest of the day.  After about 3 days of that, then I crashed for about 2 day.  And the hunger and weight gain....grrrr....I have been off of them for a week now and lo and behold, the double vision is back.   Less than an hour this time.  First time was close to 2 hours.  I have been researching alternatives to decadron.  Looks like boswellia is a winner.  Has anyone tried this?  if so, did it work?  I think I will give it a go and see how i progress. Of course, if the double vision persist, I will start the roller coaster ride of decadron.   
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

PaulW

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Re: natural remedies for brain swelling
« Reply #1 on: August 22, 2016, 02:54:41 pm »
My radiosurgeon doesn't like prescribing steroids and he has treated over 1000 ANs. Basically he says that it may help short term but there is zero evidence that it affects long term results.
So his preference is that you tough it out...
Double vision is a reasonably common complaint from people with ANs and a sign that there is a problem with you balance nerve, which should be of no surprise!
Maybe worth investigating vestibular therapy, which personally I found frustrating... So did a lot of walking instead which I found made me feel terrible straight afterwards but better the next day
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!

mcrue

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Re: natural remedies for brain swelling
« Reply #2 on: August 24, 2016, 09:15:11 am »
My radiosurgeon doesn't like prescribing steroids and he has treated over 1000 ANs. Basically he says that it may help short term but there is zero evidence that it affects long term results.


What is your radiosurgeon's point of view during the very first 2 years post-radiation, in regards to hearing loss and steroids?

In other words, if someone has a sudden onset of significant hearing loss immediately following radiation treatment, or even 3 months post treatment, or lets say 18 months post-treatment,  should they "tough it out" or take steroids in an effort to save their hearing?

I noticed in your signature that you successfully took steroids  and had your hearing restored.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

SP

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Re: natural remedies for brain swelling
« Reply #3 on: August 25, 2016, 03:15:12 am »
Hello tenai98,

Sorry to hear of your symptoms. You might find this article interesting Boswellia serrata acts on cerebral edema in patients irradiated for brain tumors: a prospective, randomized, placebo-controlled, double-blind pilot trial. [/i] A link of a previous post on this is here: https://www.anausa.org/smf/index.php?topic=22042.msg979766679#msg979766679

Also ever since my CK (its been 12 months now) I have been taking Boswellia Complex: which is a combination of Boswellia serrata gum oleoresin, Celery Seed, Ginger rhizome and Turmeric rhizome: http://www.mediherb.com/media/797304/boswellia-complex-pds.pdf

I'm pretty sure you can buy this in the US  -although I get it from a Naturopath as its practitioner only brand here (in Sydney, Aus). I can't say for sure... since there are so many various factors... but any tumor inflammation has been kept at bay (size is stable), as well as the increase in ventricle size (at 6 months post treatment) has stayed stable so far for me.

best of luck for recovery,

Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

mcrue

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Re: natural remedies for brain swelling
« Reply #4 on: September 03, 2016, 10:36:29 am »

I take the lowest dose of Xanax as needed (0.25mg).

It works wonders when I need to sleep.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

PaulW

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Re: natural remedies for brain swelling
« Reply #5 on: September 03, 2016, 02:51:42 pm »

What is your radiosurgeon's point of view during the very first 2 years post-radiation, in regards to hearing loss and steroids?

In other words, if someone has a sudden onset of significant hearing loss immediately following radiation treatment, or even 3 months post treatment, or lets say 18 months post-treatment,  should they "tough it out" or take steroids in an effort to save their hearing?

I noticed in your signature that you successfully took steroids  and had your hearing restored.
My radiosurgeon was quite adamant that I should not take steroids for hearing loss after radiosurgery, 3 months 18 months didn't matter just don't take them for hearing loss. Immediately afterwards I am not sure . Basically his hearing loss stats were the same as Stanfords with no steroids. I went against his orders and took them anyway. I have had a number of bouts of sudden hearing loss.. 3 times I took steroids and twice I didn't, each time my hearing came back and improved over the first 2 weeks.
When I went searching for how steroids might help with hearing loss for a radiated acoustic neuroma I found the evidence to be minimal. It is common practice to provide steroids for sudden hearing loss. However the mechanisms for hearing loss for a radiated AN are very different than say someone suffering from hearing loss after a virus. So my gut feel is that my doctor is right and steroids don't affect long term hearing outcomes, so following his logic, don't take them.  But just in case they do help and it is our hearing, it's ultimately our decision as to whether we take them or not.
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!

mcrue

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Re: natural remedies for brain swelling
« Reply #6 on: September 03, 2016, 04:32:28 pm »
Thank you PaulW.

Always appreciate your advice.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan