Trip to England - Just a Thought about LE

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NatsFan
NatsFan Member Posts: 3,745
edited June 2014 in Lymphedema

To celebrate our 30th anniversary and my hitting the 5 year b/c mark, DH and I are doing our trip of a lifetime this September - 2 weeks in England, Scotland, Wales, N. Ireland, and Ireland.  Yes, we're doing one of those "If this is Tuesday this must be Belgium" type tours. Tongue Out   But we figured that putting ourselves in the hands of pros for the first time would be the best way to see and learn the most.

Of course LE is on my mind.  In early April I had to fly cross-country to San Diego - I was SO good and did everything right, and still had a nasty truncal flare.  We start off in London and have a few days there.  I'm wondering if there is some way I could arrange to see a LET or massage therapist who does MLD when I arrive there so I can get a good MLD session. I'm willing to pay out of pocket - I think the cost would be worth it as I believe I could avoid a lot of issues if I could get a professional to move any accumulated fluid out right away.

Does this sound totally hare-brained?  Anyone have any experience trying to do this?  I'm just thinking out loud here, but would love to get some input from the rest of you.  I've already talked to my LET here about seeing her for a few sessions before I leave and after I get back, but I'm worried about the after effects of the plane flight while I'm there and an ocean away from her. 

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2013

    Mary, I think it's a brilliant idea.  What's your strategy for finding a clinic in London?  If it helps, I have friends who are MDs there, a married couple, and at minimum, I can ask them to explain how the health system works there, to accommodate a self-pay client. There's also an outside chance they're familiar with LE and have clinic recommendations. PM me if you'd like me to ask their thoughts, and put you in touch if there's any likely help from their contacts.

    What a great, great way to celebrate your milestones!

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited June 2013

    Carol - That would be wonderful - I'll PM you.  If you could glean any info, even as to where to start on this, that would be so helpful! My only strategy at this time was Dr. Google, so any info from someone who is on the inside of the medical community would be invaluable help.  This will be a fun quest to see if I can pull it off.  I figured if their LET are as scarce as ours, I'll need to make an appointment months in advance. 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2013

    Natfan, how wonderful! And I think you idea for getting care on landing is brilliant--should be fun, too, to comparte notes with a theraist there.

    Why not use the Therapist Locator?
    http://www.mylymphedema.com/therapist.htm

    Klose School has eight or nine trained therapists in London, and Vodder has 19. Some have email contact numbers, or you can google their clinics for "contact us" pages. Quite a lot of choices there! They could also give you payment information, I'm sure.

    Keep us posted on your discoveries!
    Binney

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2013

    Binney, you are so smart, as usual!!!

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited June 2013

    Of course - doh!  Thanks Binney for the head-slapper.  I just sent my first email off to a Vodder trained therapist in London that's near my hotel.  I'll just keep trying till I find one. 

    And by Vodder trained, I mean she trained at the actual Vodder School in Austria. Cool  

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited June 2013

    During my search I found an interesting website from the UK:  http://www.mlduk.org.uk/

    A website just about MLD and its practitioners.  I want to take the time to look it over - I've never seen anything like the equivalent here in the US. 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2013

    Mary, great site, and I hope you have a wonderful trip and get some great UK MLD

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2013

    I just sent a note to my London physician friends, on the outside chance there's a particular clinic or therapist they can recommend.  Mary, sounds like you are well on your way to making this brilliant strategy a reality.  Good for you!

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited June 2013

    Update - the first therapist wrote a lovely email back, but unfortunately is "on holiday" that week.  She referred me to that same MLD site I'd already found, so it seems like it's a central resource in British MLD World.  I'll try another one in the meantime, and maybe your London friends will know someone as well, Carol. 

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2013

    Ha!  Just received a very informative message from my physician friends, and have sent it to you, Mary.  They sent what I'll bet is that very same find-a-therapist link, but also they spoke with some folks directly and there's info about that, too.  I'm optimistic you'll find a solution!

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited June 2013

    I'm another Mary celebrating 30 years of "wedded bliss" with a trip to the UK this summer - I'll be there a couple weeks before our Natsfan so she's given me a head start on things to consider! 

    Carol, if you don't mind sending me the same info, I would appreciate it. Will PM you also...

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2013

    Cheerio to both of you! I wish I were visiting the UK this summer! Vlnrph, I certainly will share what I learned.



    Do we need a thread that's like Trip Advisor, where we share LE related resources we identify when we travel, and perhaps we also raise our hands to ask to be PMd by anyone who lives in a travel destination and might share info about good LE resources there if needed?

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited June 2013

    Good idea about the travel thread, Carol.  We can all share our local resources, and pick the brains of those who may live near our destinations.

    I've been slammed lately at work so haven't followed up yet on trying to get another UK LET since the first on said she'd be on vacation, but if/when I find one I'll certainly PM you vln. 

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited August 2013

    Well, this might have been a great idea, but I never got it worked out.  Mostly my fault - I had houseguests in late July so was focused on getting the downstairs redone in time, and I let it go.  Also, we're on a tour and somewhat locked into a schedule, and I couldn't get my schedule to coincide with an LET schedule.

    Oh well, maybe next time!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2013

    natsfan - I just took a trip from Florida to Munich/Salzburg for two weeks in July.  I have diagnosed bi-lat LE, with the cancer side more pronounced.  I actually found that I was more comfortable in Europe, I am thinking it is due to the fact that it was far less humid.  Have a great time on your trip!

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  • bhd1
    bhd1 Member Posts: 3,874
    edited August 2013

    Have a great trip! You are very proactive. I admire that!

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2013

    Back from our UK vacation for a week already - everything went well, restaurant in Scotland presented us with a special dessert on our 30th anniversary. Warm & sunny, didn't need an umbrella at all.

    One slightly unusual experience occurred with a flight attendant: not a youngster, although perhaps new to the job, she asked me what was wrong with my hand (I was sleeved in beige but with a purple gauntlet). I would have thought someone might have worn compression gear on an international trip before I showed up! I can understand that her training may not have made mention of such things since even many health care professionals lack knowledge but surely we are common enough in the air these days? 

    At least I didn't get swabbed by TSA this time...

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  • mamglam
    mamglam Member Posts: 178
    edited September 2013

    Hi vlnrph,

    Nice to hear that your vacation went well!  I too, have just returned from my trip to Greece and Turkey and did have my bra, sleeve and gauntlet on.  We had a stop in Zurich and was swabbed and double scanned.  The female officer wanted to further investigate until I finally explained to her.  It was embarassing and felt humiliated by the experience. 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2013

    I was scrutinized closely in Munich - bi-lat sleeves and gauntlets - I was frisked, not just wanded.  I fly a lot for a clinical trial up in Washington D.C. and I am usually swabbed for explosives when they spot the sleeves - I have gottten used to it.

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2013

    In the past year I submitted paperwork for the customs/border patrol program called Global Entry, and that program gets you into the TSA Pre-check list, where there's no back-scatter machine, no pat down, no shoes off, no liquids out, no shoes off, no coat off. It costs $100 but you can do another program called Nexus that gets you the same privileges, and I believe it's only $50.  Not worth it if you travel infrequently, but for frequent travelers, it speeds you through security with minimal hassle.  Before pre-check, my sleeve drew attention infrequently, but now it's never an issue.  

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  • Estel
    Estel Member Posts: 3,353
    edited September 2013

    carol57 - is it an annual fee or a one-time fee?

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2013

    Global Entry is for 5 years, and Nexus I am not sure but think it is 5 years, too.

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  • bhd1
    bhd1 Member Posts: 3,874
    edited September 2013

    Vinrph did you get to the le therepist?

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