LVA surgery - bypass surgery - Have you done it?

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited August 2015

    Olivia - thanks for checking in!! So glad to hear you are still doing well!!! I am doing my 1st transatlantic flight in 5 weeks and have no real concerns. I faired very well with 4-5 hr flights . Finally getting back to see my family in Poland! It's been 11 years since I've seen them so - very excited!!

    Sorry for the long absence but I changed jobs last month and haven't had any time to catch up withthese threads. Haven't had a chance to reschedule my next LVA either. Now I 'm going to wait until after my trip- which is my reward from the 70-80hr work weeks!!

    HappyTricia - let me know if you have any questions about Dr Chen. I'm not sure I can answer your question- sorry. But if you do venture to Iowa - keep us posted.

    Hope everyone is doing well!! Thoughts & hugs to all!!!

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  • Olivia82
    Olivia82 Member Posts: 29
    edited August 2015

    Mjsgumbas - my arm was absolutely fine on the flights, enjoy Poland!

    Happy trisha- I'm pleased I went ahead with the LVA, it's not a total cure but my arm is alot more stable and my surgeon said the main reason for me doing it (my LE is quite 'mild') was to stop it getting worse and developing fibrosis etc. I rarely wear compression now which was my main aim of the surgery. We did talk about doing another LVA in my upper arm but as my measurements are now stable and my scan showed the anastomoses are working they suggested leaving any further surgery for now. Good luck with your consultations!

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  • AussieElaine
    AussieElaine Member Posts: 64
    edited August 2015

    Hi ladies, just thought I'd check in. You wouldn't believe the battle I'm having trying to get a new custom made sleeve through our Medicare system here. Firstly, I was told by theOT dept at the hospital that as I had "something done to my arm" that I would have to be referred by a Dr at the hospital. Problem with that is the only one I had seen was the RO and radiation has been transferred to a new hospital which is an hour's drive away yep still in Perth! A very sprawling city nearly 60 miles from one end to the other. Had to get a referral from her to the breast clinic only to be told well you've had something done to your arm so we don't know what level of compression you should be in😝GRRR     Good news, my arm is coming on great LE had disappeared from my hand completely and seems to be slowly going up my arm almost to the forearm. I can pinch the skin on it and it feels so much softer. 

    Happy trisha, I definitely recommend LVA, as Olivia says it's not a complete cure but it sure does give you hope😀

    Misgumbas, happy holiday and you will be fine on the flight. Mine was 19 hours and I did OK. We are just back from a snorkelling trip on Ningaloo Reef - it was awesome😀

    Nordy, are you any closer to your surgery with your insurance and everything ?




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  • kriserts
    kriserts Member Posts: 224
    edited August 2015

    I have a google alert for this procedure, and this study came through today: http://www.ncbi.nlm.nih.gov/pubmed/20811210


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  • Nordy
    Nordy Member Posts: 2,106
    edited August 2015

    Thank you for posting the link!

    Aussie -- I am closer, for sure. Just waiting to hear back on one thing. Will keep you all posted!

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  • kriserts
    kriserts Member Posts: 224
    edited August 2015

    Nordy, you're doing the LVA? Last time we emailed you were thinking about the LNT.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited August 2015

    I've had VLNT. It has been up and down. At first, I really thought I was better. Now I'm thinking it was because I was on health-leave from work and not typing much and doing a lot less. I don't have anything good to report at this point. Praying it gets better down the line. I'm a very positive person and today lymphedema is making me hate my life. I've always been grateful, thankful, upbeat, etc. but this is all just to challenging right now.

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  • Nordy
    Nordy Member Posts: 2,106
    edited August 2015

    Hugs to you Maria.

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  • Katiejane
    Katiejane Member Posts: 789
    edited August 2015

    Hugs Maria! I just had my LNT the 25th of this month. Still way too early to have a change. 2 drains still in place and this wonderful wrapping!!! Doesn't get any better right! I have heard up to 1 year for stable results to show so hang in there and please keep us posted. Good thought for you! Katiejane

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  • Nordy
    Nordy Member Posts: 2,106
    edited August 2015

    KatieJane.... I am continuing to think about you and send positive thoughts and prayers!


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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited September 2015

    I just passed 6 months since VLNT surgery. Overall I do seem to be doing better. My skin quality is a lot better and I have less swelling in my wrist area, chest, and upper back than I did before consistently for several weeks now. My upper arm and mid arm remain the most swollen.

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited October 2015

    Mariasnow - glad to hear you feel a consistent difference!! Hope, as more time passes you will continue to see more improvement!!!

    Curious how other's are doing????

    I am back from my 2 week journey around Poland. 5 flights and my arm faired great!! No issues whatsoever! Did a ton of walking and sightseeing and honestly - never even thought about my arm, until I had to put the dreaded sleeve on before flying!!

    Have a call in to Dr. Chen's office to re-schedule my 2nd LVA. I have new insurance now with my new job, so we have to go thru all the red tape of approval again and can hopefully get in the books before the end of the year. I want to go into the new year GLOVE FREE if possible.... or at least after a few weeks/months into the new year.

    Hope all are well and those who had LVA / LVNT are seeing continued progress!!

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited October 2015

    Seems Dr. Chen is busy, busy, busy, with LVA - I can't get in until March 11th!!!!! That was shocking... but at least I am on the calendar, even though it is later that I would have liked. Have to have another spy test done a month before (yuk!) and re-do the pre-op stuff... but I know it will all be worth it.

    Stinks a bit because we usually host Easter and my procedure will be 2 weeks before - but I think I can recruit some family help to continue our tradition.

    Hope all are well!!

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  • Olivia82
    Olivia82 Member Posts: 29
    edited October 2015

    wow he is busy! maybe that's a good sign!

    I hope the wait goes quickly, I've had an 18th month follow up and my arms are virtually the same size (ranges from 5 - 40 ml difference).

    I still have variable days but any swelling seems to quickly settle with wearing compression/MLD.

    I hope everyone is doing well.

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  • AussieElaine
    AussieElaine Member Posts: 64
    edited November 2015

    Hi all, just thought I'd give an update on my LVA surgery. Went to the hospital for L-Dex reading and great news it was 9.4. Any thing under 10 is considered normal range. This is a fantastic result for me as my pre-surgery reading was 30, then went down to 11.8 in August. I could not be happier and my arm is looking more like a normal arm and I'm no longer distressed to look at it

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  • kriserts
    kriserts Member Posts: 224
    edited November 2015

    Can someone describe the recovery from this surgery? How long are you off work, how long do you need to wrap or wear compression, etc?

    For instance, on another board, Nordy shared that the LNT was a tougher surgery than she anticipated, with what sounds like significant downtime.

    My IMPRESSION of the LVT is "walk in the park." Get the surgery, wrap arm for 3 days, go back to work the next week, feel fine, wear compression for about a month, boom you're done.

    Can someone fill me in on the reality of the situation? thanks!

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited November 2015

    Aussie - Excellent news!!! Hope you have continued success!!!!

    kriserts - I have the LVA in March of 2014 on a Friday. I would have gone back to work Monday but was told to wait to shower until Monday evening or Tuesday morning. I missed 2 days of work. I had an ace bandage for the first week hand wrapped daily and then compression for I think it was the first 2 weeks... but can't really remember honestly. If you look back thru the posts from that time, I tried to document as best as I could.

    I am set to have the LVA done on my hand March 2016 - just received approval from my new insurance co! Wish it was sooner, but Dr is busy I guess.... I will be so happy not to wear this glove anymore!!!

    Hope you are all well and anyone that had LVA or LVNT - hope you continue to have positive results!!!!

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited December 2015

    Just wanted to take a minute to wish all of you a very Merry Christmas and a very Happy & Healthy New Year!!!

    Hope everyone is doing well.... check in & let us all know how things are going. I'm scheduled for my pre-surgery spy test on 2/15 and as long as nothing has changed I will have the LVA on my hand on 3/11. It can't get here soon enough.... just want to get past another surgery and hopefully heal quickly - followed by no glove anymore!!!

    Hope Santa is good to everyone!!! Enjoy the holiday season!

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  • alycallie
    alycallie Member Posts: 32
    edited December 2015

    I've been following this discussion for awhile... hope everyone is doing well. I was supposed to have LVA surgery at the same time as my DIEP surgery in March 2015 but my insurance denied coverage a day before surgery... just curious as to what kind of insurance everyone has?

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited December 2015

    allycallie - my 1st LVA was done when I had BCBS . I switched jobs this summer and now have United Healthcare. Dr Chen's office submitted the pre approval a few weeks ago and it was approved.

    When we were approaching the 1st surgery, I know Dr Chen had to jump through some hoops with BCBS to get the approval but luckily was successful.

    It isn't a widely practiced surgery yet so it is tricky with insurance. Hopefully that will change.

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited February 2016

    Been a while since I've posted so I thought I'd check in...

    I was supposed to have my Spy test this past Monday, but had to postpone my 3 hr one way trip to U of Iowa. I had my yearly blood work done last week and the CA 27-29 counts are, ever so slowly, creeping up so my MO ordered a PET scan.

    I didn't want to make the trip to Iowa, do the Spy only to find out we have other issues and might possibly have to postpone my LVA on 3/11.

    Thankfully - everything came back A OK after the PET!!!!!!!!!!!!!! So, now I will have the Spy on 3/10 in the am and surgery on 3/11 in the am. I trip for both Smile. It worked out too because the day we would have had to travel - we would've driven the whole way in snow....would have stunk LOL!!

    I hope you are all well and looking forward to spring - I know I am!!

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited March 2016

    My date is quickly approaching!! I learned that I will only have a consultation with Dr. Chen on the 10th. They will do the spy during/pre surgery - YAY!!

    So we will make the 3+ hour journey early Thursday morning - have lunch in town and hopefully see some eagles near the river where we like having lunch.

    I meet with him at 2pm then will have to be back at 5 am Friday for prep!! I really hope this works as well as my arm!

    I will post some pictures this week, so we can compare. When I wear the glove - all is good. It's when I use my hand for simple tasks like cooking or washing dishes that there is an issue and swelling.

    More later this week!

    Hope all are well!!!

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited March 2016

    Good Luck mjsgumbas! I love watching the Eagles soar

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited March 2016

    So here is a morning picture- no compression yet. I seem to sleep on my tummy with my arms tucked under me, which doesn't help! lol.... But you can see how puffy the top of my hand and fingers are. Hopefully after Friday (and some patience in healing) this will be a memory!!!

    I have to do some things around the house today, which I will wear my glove and post some comparison pictures.

    I neglected to post before & afters last time, so I don't want to do that again!!

    Hope all are well!image

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited March 2016

    Thanks for the update & picture mj. We will be waiting to hear from you after friday.

    Hope it really helps your hand

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited March 2016

    Sad day 😩 We ended up doing the spy with Dr Chen today, instead of pre-op tomorrow morning. There were not enough viable lymphatics to proceed with the LVA in the hand. I'm very disappointed but we can't take the risk of further damage in taking a chance.

    Dr Chen told me to be patient as medicine is advancing every day and there is a new initiative to address lymphedema. Fingers crossed things will change in the near future.

    I will post pictures this weekend of my latest measurements - right now we are going to head to the casino and have some fun. I'm done being sad for today!!!

    Hope all are well! Thanks for thinking of me!

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited March 2016

    First pic is the damage seen on the spy. The solid line is at the wrist is one viable lymphatic and the squiggly one by the thumb is the otherimage

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited March 2016

    These are my current measurements 2 years after LVA. Being right handed you expect that arm to be a little larger, but all in all LE in that arm is great!image

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited March 2016

    Im really sorry to hear this MJ. That has to be disappointing :( Grrrr. Im frustrated for you

    Your measurements do look pretty good.

    What did he have to say about the bottom measurements? Does he feel anything -care wise-might help them go down more at this point?

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  • Olivia82
    Olivia82 Member Posts: 29
    edited March 2016

    mjsgumbas - I'm so sorry, it's really difficult once you've geared yourself up for any surgery to be derailed at the last minute...... But better to not cause anymore damage especially as you've overall had a good response.

    I'm nearly 2 years post LVA and my arm has been really good but I have had a few episodes of pain and swelling in my hand. I have been looking into a possible VLNT, the results seem good but I just really worried about any chance of causing LE in the donor area so think I'll wait and see, apparently a lot of surgeons are due to publish their results this year so we should know more over the next 12 months. I agree with your surgeon and definitely feel like there's hope!

    Lots of love x

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