ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: KaiJiaH on April 05, 2016, 02:51:48 am

Title: Planning CK treatment at remote location with long haul flight
Post by: KaiJiaH on April 05, 2016, 02:51:48 am
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
 
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: PaulW 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
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: KaiJiaH on April 05, 2016, 07:36:16 pm
thank you very much Paul.

Have read some good information you provided.
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: SP 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
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: KaiJiaH 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
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: SP 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
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: GaryWNT 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
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: KaiJiaH 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
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: ANGuy 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.
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: Tumbleweed 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
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: KaiJiaH 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
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: SP 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
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: KaiJiaH 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
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: KaiJiaH on April 12, 2016, 08:28:44 am
Can anyone explain the difference between termrric and cur cumin ?

Thank you
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: SP 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
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: KaiJiaH on April 13, 2016, 12:58:52 pm
Thank you Stella for your clear explainatiin.

I am very glad to hear you only have minor symptoms. Hope you best luck with your next MRI.

Waiting to board to Munich at Sydney Airport at moment.

KJ
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: SP on April 17, 2016, 03:14:43 am
Hi KJ,

Safe travels & the very best of luck to you. The CK treatment itself is much less stressful than the diagnosis... I hope that everything goes smoothly, including the plane rides :)

Thinking of you & wishing you the very best outcome.

S
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: KaiJiaH on May 04, 2016, 10:43:02 pm
Thank you Stella and all people who answered my post here.

My treatment in Munich went quite smoothly. We also went to Paris after the treatment. The rides of flights were just normal. I did not feel hard at all. I brought some natural anti nausea products but did not needed them.

I have block and full ear feeling that comes and goes. On the second morning after the treatment, I feel declined hearing at left ear (AN side), it got better in the afternoon during first few days. If I rub and massage around my ear, it helps. I feel it is more like a “mechanical issue” inside my ear than nerve damage. Has anyone have similar experience? Will this symptoms improve over time?

I have booked appointment to see my ENT and Surgeion Dr Flanagan. Will also do hearing test.

Dr Muacevic gave me 3 pills after treatment. They are Dexamethasone and I took one immediately after the treatment. on the second day of the treatment we walked in English Garden in Munich, the total walking distance was 18KM and 25K steps. Must be the pill gave me the energy. :-)

We are back to Sydney on 27 April and I am back to work this Monday but working from home this week.

Thank you again
Kai-Jia
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: SP on May 05, 2016, 07:45:19 pm
Hi KJ,

Great to hear from you !! & that your treatment went smoothly.

You may find many symptoms come & go over time -- i still get that fullness feeling in mine; but not all the time and not as much as I used to.

Yes the Dexamethasone  certainly can put a spring in your step :) take things easy and positive thoughts help too.

It would be great to chat with you about your experience in Germany, if you feel up to it - I sent you an email with my details.

wishing you a smooth healing journey

my best,

Stella
Title: Re: Planning CK treatment at remote location with long haul flight
Post by: ivana on February 23, 2021, 12:28:42 pm
Thank you Stella and all people who answered my post here.

My treatment in Munich went quite smoothly. We also went to Paris after the treatment. The rides of flights were just normal. I did not feel hard at all. I brought some natural anti nausea products but did not needed them.

I have block and full ear feeling that comes and goes. On the second morning after the treatment, I feel declined hearing at left ear (AN side), it got better in the afternoon during first few days. If I rub and massage around my ear, it helps. I feel it is more like a “mechanical issue” inside my ear than nerve damage. Has anyone have similar experience? Will this symptoms improve over time?

I have booked appointment to see my ENT and Surgeion Dr Flanagan. Will also do hearing test.

Dr Muacevic gave me 3 pills after treatment. They are Dexamethasone and I took one immediately after the treatment. on the second day of the treatment we walked in English Garden in Munich, the total walking distance was 18KM and 25K steps. Must be the pill gave me the energy. :-)

We are back to Sydney on 27 April and I am back to work this Monday but working from home this week.

Thank you again
Kai-Jia

Hi KaiJiah, I am newly diagnosed with AN and planning trip to Munich. Please tell me how do you feel today after few years? How is your hearing today? How it was just before CK and did it decline after therapy? I am professional musician and this means world to me...doing researching for 2 months already and I am close to decision. Thank you so so much!