Author Topic: Planning CK treatment at remote location with long haul flight  (Read 16050 times)

KaiJiaH

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I am planning a CK treatment in Munich with Dr Muacevic. It will be a long haul flight to fly back to Sydney post treatment. Does anyone also received CK treatment in a remote location? If so, can you please kindly share your experience and answer my questions:

1)   How soon did you take flight to fly back to your home town? Did you find the long haul flight impact your treatment outcome?
2)   How did find the pressure change during flight effect your ear or hearing nerve?
3)   Did you take any multi vitamins such as Vitamin B complex, Vitamin E and C to help recover or nature anti-swelling and anti-inflammation during the travel? Did you find it helpful. What is your recommendation of the product?

I would appreciate all suggestions and reminds.

Thank you very much
KJ
 
Left AN diagnosed 28 Jan 2014 - 11x6x7 mm
MRI 23 Apr 2014 - 9.4x6.5x5 mm
MRI 21 Jan 2015 - 14x7.2x6 mm
MRI 31 Jul 2015 – 15.2x8.1x7.3 mm
MRI 29 Jan 2016 – 16x10x8mm
Hearing and balance not impacted, not much symptoms, Planning CK treatment
Left thyroid cyst that is shrinking slightly

PaulW

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Re: Planning CK treatment at remote location with long haul flight
« Reply #1 on: April 05, 2016, 07:08:27 am »
I flew from Adelaide to Munich via Melbourne and Heathrow.. Yuck.
I stayed at a small hotel nearby
https://www.tripadvisor.com.au/Hotel_Review-g187309-d945220-Reviews-Thalmair_Hotel-Munich_Upper_Bavaria_Bavaria.html
Hotel was pleasant typical of a small hotel in Germany

It was nice and a short walk to the European Cyberknife Centre.
I had no problems walking there. From memory you can also catch the subway. But I think it was only one stop so I walked.

I flew back 36 hours after the treatment.

No issues with the pressure changes at all the problem for us is the nerve and not the middle ear so should be no issues.

Tried a few natural things but not convinced it did Anything.   however Ginger Seasickness tablets did help with nausea

Dr Muacevic was terrific
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!

KaiJiaH

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Re: Planning CK treatment at remote location with long haul flight
« Reply #2 on: April 05, 2016, 07:36:16 pm »
thank you very much Paul.

Have read some good information you provided.
Left AN diagnosed 28 Jan 2014 - 11x6x7 mm
MRI 23 Apr 2014 - 9.4x6.5x5 mm
MRI 21 Jan 2015 - 14x7.2x6 mm
MRI 31 Jul 2015 – 15.2x8.1x7.3 mm
MRI 29 Jan 2016 – 16x10x8mm
Hearing and balance not impacted, not much symptoms, Planning CK treatment
Left thyroid cyst that is shrinking slightly

SP

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Re: Planning CK treatment at remote location with long haul flight
« Reply #3 on: April 05, 2016, 08:09:41 pm »
Hello KJ!

Firstly best of luck on coming to your treatment decision and your trip to Munich.

I guess it's an individual thing. For me the flight home from Stanford was a little tough - possibly a combination of the treatment, stress and the length of the flight. I flew from San Fran to Auckland (13 hours) and then from Auckland to Sydney (3 hours). I had mainly nausea and headache the whole way -- this was kept at bay mostly by sipping really cold soda/mineral water (thank you AirNZ) and taking Neurofen (Ibuprofen) . In retrospect, it probably would have been a good idea to take something anti-nausea for the flight. Paul's suggestion for ginger tabs sounds like a good one!

They gave me a steroid tablet and anti-nausea tablet each day i was in treatment (3 days) but this had all worn off by the time I took my flight (2 days later). It may be a good idea to ask the doctors in Munich about the best options of something to help you through the flight home.
PS I had no pain in my ear due to the pressure changes associated with flight & both my local neurosurgeon & Dr Chang advised that flying was OK.

my best,

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

KaiJiaH

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Re: Planning CK treatment at remote location with long haul flight
« Reply #4 on: April 05, 2016, 10:48:45 pm »
Thank you Stella for your kind response.

How many days did you stayed in US after treatment before you fly back? do you think the long haul travel have some impact to your recovery and treatment outcome?

Hope you the best during your recovery.

KJ
Left AN diagnosed 28 Jan 2014 - 11x6x7 mm
MRI 23 Apr 2014 - 9.4x6.5x5 mm
MRI 21 Jan 2015 - 14x7.2x6 mm
MRI 31 Jul 2015 – 15.2x8.1x7.3 mm
MRI 29 Jan 2016 – 16x10x8mm
Hearing and balance not impacted, not much symptoms, Planning CK treatment
Left thyroid cyst that is shrinking slightly

SP

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Re: Planning CK treatment at remote location with long haul flight
« Reply #5 on: April 06, 2016, 03:04:46 am »
I finished my last of 3 treatments on a Wednesday around 1pm; and I flew out of San Francisco on Friday. No I don't think the length of the trip home had an impact to my treatment and outcome. I stayed home home from work for a couple of weeks to rest and just take it really slowly.
For the first 6 months post treatment, my symptoms were mild with some headaches that were managed with Ibuprofen & mild nausea that I manged to overcome with ginger tea.
this is a great brand (made in California) and they ship to Aus --
http://au.iherb.com/Traditional-Medicinals-Herbal-Teas-Organic-Ginger-Caffeine-Free-16-Wrapped-Tea-Bags-85-oz-24-g-Each/63386

my best,
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

GaryWNT

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  • Ready for 1st MRI post CK . . .
Re: Planning CK treatment at remote location with long haul flight
« Reply #6 on: April 07, 2016, 03:49:19 am »
Hi, KJ,
I flew from Vietnam to San Francisco for my CK treatment. In total, with layovers, it was about 19hours.
1.) I waited 6 days in SFO before returning, but now know I could have done it as early as 2 days afterwards.
2.) I didn't experience any issues with pressure changes.
3.) I wasn't on any medications in preparation for the trip.

I have since made two more long haul flights with no issues at all. Each person is different, so one never knows, but hopefully you'll be able to factor the number of responses you receive.

Good luck with your CK treatment!
Gary
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

KaiJiaH

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Re: Planning CK treatment at remote location with long haul flight
« Reply #7 on: April 10, 2016, 07:16:56 am »
Thank you Stella and Gary for your kind response,

We will be going to Munich. I think I bought two different types of The Traditional Medicinals Herbal teas Stella recommended during our last visit to US. I will try to order the ginger tea but doubt it will arrive before I left for Munich. Will see if I can get from local organic food shops.

Hope you all good health.
KJ
Left AN diagnosed 28 Jan 2014 - 11x6x7 mm
MRI 23 Apr 2014 - 9.4x6.5x5 mm
MRI 21 Jan 2015 - 14x7.2x6 mm
MRI 31 Jul 2015 – 15.2x8.1x7.3 mm
MRI 29 Jan 2016 – 16x10x8mm
Hearing and balance not impacted, not much symptoms, Planning CK treatment
Left thyroid cyst that is shrinking slightly

ANGuy

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Re: Planning CK treatment at remote location with long haul flight
« Reply #8 on: April 10, 2016, 07:48:11 am »
Thank you Stella and Gary for your kind response,

We will be going to Munich. I think I bought two different types of The Traditional Medicinals Herbal teas Stella recommended during our last visit to US. I will try to order the ginger tea but doubt it will arrive before I left for Munich. Will see if I can get from local organic food shops.

Hope you all good health.
KJ


You can make your own ginger tea by just smashing some fresh ginger, boiling it, and drinking the liquid after it steeps for 20 minutes or so.
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.

Tumbleweed

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Re: Planning CK treatment at remote location with long haul flight
« Reply #9 on: April 10, 2016, 12:42:29 pm »
Hi, KaiJiaH:

Mine was not a long-haul flight, but a flight nevertheless within the U.S. I flew to California to get treated by Dr. Steven Chang. I flew home the very next day after my 3rd and final treatment. The flight, while exhausting, didn't seem to impact my treatment outcome, which was excellent (a near-miraculous recovery). The pressure change didn't affect my ear or hearing nerve at all.

For months both before and after treatment, I took Flavenzyme (natural anti-inflammatory enzymes; buy online at vitacost.com). After awhile, I switched to taking only bromelain, which even Western research shows is anti-inflammatory and can shrink certain tumors. I also took turmeric extract daily for inflammation. I have no way to be certain, but I believe taking the bromelain was greatly responsible for the tumor shrinkage I had post-CK (although Flavenzym, which contains bromelain, had no affect whatsoever before treatment).

I commend you for traveling in search of your highest treatment option. So many people choose the convenience of being treated locally, sometimes with very sub-par results. You are giving yourself the greatest gift.

Best wishes,
TW
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

KaiJiaH

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Re: Planning CK treatment at remote location with long haul flight
« Reply #10 on: April 10, 2016, 08:24:14 pm »
Thank you ANGuy for your tip of making ginger tea. Will try to do it after I got back. I need to get tea bags during flight.

Hi Tumbleweed,

Thank you so much for sharing your experience and anti-inflammatory tips. I started to take BioCeuticals Theracurmin BioActive 300mg – highly Bioavailable Curcumin two days ago and will go to find out if I can get Bromelain supplement.

Your positive outcome definitely helps me to settle with this hard and big decision.

All the best.

Kai-Jia
Left AN diagnosed 28 Jan 2014 - 11x6x7 mm
MRI 23 Apr 2014 - 9.4x6.5x5 mm
MRI 21 Jan 2015 - 14x7.2x6 mm
MRI 31 Jul 2015 – 15.2x8.1x7.3 mm
MRI 29 Jan 2016 – 16x10x8mm
Hearing and balance not impacted, not much symptoms, Planning CK treatment
Left thyroid cyst that is shrinking slightly

SP

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Re: Planning CK treatment at remote location with long haul flight
« Reply #11 on: April 10, 2016, 11:04:12 pm »
Hi KJ,

It's great you chose a reputable brand of Curcumin -- as you may likely know many of the "health store" supplements are sometimes inferior quality and often don't provide the therapeutic dosages of the herbs.

There are many, many supplements with good evidence out there -- may I suggest consulting with a qualified herbalist in addition to your own research to source what you need.
FYI...
I am currently taking MediHerb's Boswellia Complex (Boswellia, Curcumin, Celery & Ginger), primarily as an anti-inflammatory and hopefully it helps with this communicating hydrocephalus I have.
Also if you are interested in some additional reading (although you may have had enough of it by now  :) )..this article below details the use of a  German product of Boswellia: H15 (350 mg; Hecht Pharma, Stinstedt, Germany)  using a dosage of 4200 mg/day (3 4 capsules/day) ; to treat cerebral edema in patients irradiated for brain tumors...
http://onlinelibrary.wiley.com/store/10.1002/cncr.25945/asset/25945_ftp.pdf?v=1&t=imvi9qmj&s=561a7460d3538c3e4e345b2a01d6b24bb14b5c22

Previous related post & comments here:
http://www.anausa.org/smf/index.php?topic=22042.msg979766679#msg979766679

I would be curious to know if the German medical doctors use or support the use of herbal supplements over there (as here they generally do not).

Take good care, especially to also manage stress as much as possible. I have to say, that making the big decision and getting the treatment done was a huge relief for me.

I'm wishing all the very best for you.

S
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

KaiJiaH

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Re: Planning CK treatment at remote location with long haul flight
« Reply #12 on: April 12, 2016, 07:58:32 am »
Hi Stella,

Thank you very much for your kind message and sharing the information about the German product of Boswellia and the post of the discussion. I am certainly interested to read them all. Will ask Dr Muacevic about this product too.

Hope you good recovery.

KJH
Left AN diagnosed 28 Jan 2014 - 11x6x7 mm
MRI 23 Apr 2014 - 9.4x6.5x5 mm
MRI 21 Jan 2015 - 14x7.2x6 mm
MRI 31 Jul 2015 – 15.2x8.1x7.3 mm
MRI 29 Jan 2016 – 16x10x8mm
Hearing and balance not impacted, not much symptoms, Planning CK treatment
Left thyroid cyst that is shrinking slightly

KaiJiaH

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Re: Planning CK treatment at remote location with long haul flight
« Reply #13 on: April 12, 2016, 08:28:44 am »
Can anyone explain the difference between termrric and cur cumin ?

Thank you
Left AN diagnosed 28 Jan 2014 - 11x6x7 mm
MRI 23 Apr 2014 - 9.4x6.5x5 mm
MRI 21 Jan 2015 - 14x7.2x6 mm
MRI 31 Jul 2015 – 15.2x8.1x7.3 mm
MRI 29 Jan 2016 – 16x10x8mm
Hearing and balance not impacted, not much symptoms, Planning CK treatment
Left thyroid cyst that is shrinking slightly

SP

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Re: Planning CK treatment at remote location with long haul flight
« Reply #14 on: April 12, 2016, 11:52:37 pm »
Hi KJ,

Turmeric refers to the the whole herb, you can buy this fresh - it looks similar to the ginger root - but is an intense bright yellow color. It is often dried, then ground up and sold as a powder-- the botanical name is Curcuma longa. Traditionally it is used in cooking but in more recent times it is packaged and sold as a health supplement.
Curcumin is a component of Turmeric --it is often cited as the "active" component and has many scientific studies to support its use as an anti-inflammatory ; as well as lots of other uses. Curcumin is extracted out of the Turmeric and then sold as a supplement -- this form is usually more expensive as the Curcumin is in concentrated form, so you get more of the active per tablet/capsule.

I am going well, some minor symptoms that I'm hoping to ride out :) and another MRI due in a few weeks.

I hope you are going very well.

S
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