Had VLNT or LVA? Please share here or message me!

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Nordy
Nordy Member Posts: 2,106
edited June 2018 in Lymphedema
Had VLNT or LVA? Please share here or message me!
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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2015

    Okay, I have been mulling these procedures over for the last 4 years... and I want to know your outcomes --- The good, the bad and the ugly... Really. Please share here or message me. My goal is not to judge... I am just trying to make an informed decision and as with all newer procedures, it can sometimes be hard to do when there is not a ton of information out there - especially when there is risk involved. I don't post much, but I have been around here for a long time, so please don't think I am a newcomer here to stir the pot and I will not and hope others will not judge your decisions. I am really just in the information gathering stage... okay, well, I have been in the information gathering stage for years, but it seems only recent that people are starting to move forward with these surgeries. I am highly motivated by fear... LOL.... of crap that I totally can't control, so knowing all the pros and cons and weighing them out (after all, I am a Libra) is what works for me. Plus, it really does benefit everyone in the long run! All I know for sure is that if it weren't for women that were open and willing to share, I would not have the awesome reconstruction I have now, so I know how important this is! Thank you!


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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited March 2015

    anyone?  Id really love to hear your stories/experiences  also.  Did either procedure help truncal LE?

    I figure I will have an LVA at some point & I need to do it before dh retires

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

    Nobody?


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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited April 2015

    Well...if someone new does have one of the surgeries...Please post here :)

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2015

    I had vlnt surgery a week ago in combination with a latissimus dorsi revision. Richard Klein in Orlando is my surgeon. I'm out on disability from work for 3 weeks.

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  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited April 2015

    I'm interested on behalf of a dear friend. Looking for experience with VLNT?

    Thx

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

    Maria - thank you, thank you for posting! Please keep sharing!

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2015

    I will share and be honest. Right now my arm is the smallest it has been in many months but I'm resting and wrapping a lot and have had strong results from just that before. The biggest thing I have noticed so far is when I do my MLD it seems to actually be working better already. Also I always had hand pain with or without flare-ups and my hand is feeling good.

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

    I am so glad things are going well so far. Thank you so much for sharing with us!

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2015

    Yes, still so far, so good. My donor site healed up quickly. It was quite swollen for 2.5 weeks but is looking normal and only slightly swollen at this point and my arm seems "pretty good." I sincerely hope I have good things to share so others can look to this procedure with confidence. I feel brave to be on the early end in this country and hope that my courage can help others.

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

    Maria - thank you so much for being so brave and sharing the good and bad with us! You are definitely in my thoughts and prayers!


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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2015

    My doctors told me how important it was to go into this with realistic expectations and pointed out how long it takes for new lymph vessels to take root from the new nodes. It truly is like planting a seed of a tree that takes a while to become a seedling and several years for it to become a new tree. I do believe though that my arm is indeed better already. I waked again last night and got all heated up - which ALWAYS made my arm swell before. My arm looked the same as when I left the house 90-minutes before when I got home and with no compression.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2015

    I had my first post-surgery measurements done today at the 4-week point. I'm WAY down from 18% and a 350 ml difference to 10% with 200 ml difference. Before I was always going up and not down!

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  • Katiejane
    Katiejane Member Posts: 789
    edited April 2015

    Oh Maria!! I am so happy for you!! Thank you for sharing this info- I am thinking of having the LNT but am so afraid I will end up with more LE. I have had 5 cases of cellulitis in the past 4 years and I'm about at my wits end! It is people like you who make a difference in so many others lives!! Katiejane

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  • Katiejane
    Katiejane Member Posts: 789
    edited April 2015

    Maria, What does post op recovery entail- I assume it is a slow process with many visits to your LE therapist and wrapping all of the time??

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2015

    Katiejane, I won't lie. Recovery is challenging...as I sit here with my arm in a knuckles to shoulder wrap put on me by my lymphedema therapist yesterday afternoon. I needed major hands-on help from my boyfriend the first 2 weeks because of 2 drains (one in my leg and one in my underarm) and my orders not to bend, reach, stoop, take big steps, drive, etc.. It is a sensitive surgery. It is recommended to go to wrapping and therapy as much as possible. I've been going just twice a week - but my boyfriend got trained in the wrapping process and we change my wrap daily. When the wrap is off I do MLD. Because lymphedema already impacted my life and our lives so severely every single day, we made the wise decision to dedicate ourselves to this process and recovery. Living in fear of life-threatening infections and worsening lymphedema is a heavy heavy load. 6-8 weeks of intense focus to improve our odds seems well worth it. I've had to use vacation time, go out on short-term disability and lose pay, and lose choice assignments and status at work. It is what it is. Cancer is a crap hand to be dealt and lymphedema as a follow-up is brutal. I'm lucky my employer is now allowing me a few weeks to work from home prior to returning to the office. I'm hoping if you need the surgery you can find a way. I was resistant, fearful, apprehensive, and concerned at every single pass - especially having to travel out of town, stay in a hotel, cover expenses, and miss work. The going way tough so I got my tough going.

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  • mary625
    mary625 Member Posts: 1,056
    edited April 2015

    Mariasnow--from where did they take the nodes

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2015

    Nodes were taken from lower abdomen through the groin. Scar is on groin but nodes came from several inches higher.

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  • mary625
    mary625 Member Posts: 1,056
    edited April 2015

    I'm glad you were able to get them from there. I failed the lymphoscintigraphy for that area

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited May 2015

    Mary, I hope you are able to have a surgeon and a plan that will work for you. I had a 5 week check-up yesterday and my arm is 22% smaller than at my pre-surgical assessment. That really changes what I can wear and makes a major difference in my life. I actually work a cute Jean work shirt today with my compression. I couldn't button the wrist so I rolled the sleeves but it is such progress k was proud of my dream sleeve.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited May 2015

    Now my arm is back to as bad as it was before surgery. I hate to be the bearer of this news that has put my life into one of the worst downward spirals since my diagnosis although this may be worse. Back then I still believed in the possibility of anything going back to normal. Now I am seeing things are just getting worse and worse and worse since diagnosis.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited May 2015

    Oh, fuck, Mariasnow. I am so sorry to hear that. Are you ok mentally? Man, that just sucks. Have you talked with the docs who performed it? O my god...

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited May 2015

    Not at all OK. Possibly the worst I've been emotionally since first diagnosed with cancer. Just deleted pretty much every positive thing I ever posted on my Facebook because I don't believe anymore. I feel sorry for my boyfriend and family they got stock with the broken person who is only a shadow of her former self.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited May 2015

    It cannot be that bad! You ARE still who you were, just a little damaged! I am scared for you, and wish I was there, to spend some time with you.... I got fat too. It kind of worries me that you deleted all your FB stuff. I would so hug you and listen to you, if I were there. But please stay here on BCO as much as you can for today, till you feel better. Please don't disapear, as I will really become concerned for you, ok?

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2015

    Maria, having your hopes dashed is so painful, and if you are feeling lower than low, it's completely understandable. LE is hateful, and you went after it with a vengeance, and if life were fair, your reward for that would be an end to the LE madness. I'm so, so sorry that you're not getting what you hoped for, and I thank you immensely for having the resolve to keep us informed, even when reporting bad news is painful. You're not broken, just your spirit. That part of you can mend. And it will. Hugs...

    Carol

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2015

    Maria, I can't begin to understand what you must be going through. I just want you to know there are people that care about you, and you are not alone. Sending gentle hugs to you.

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  • SweetHope
    SweetHope Member Posts: 439
    edited May 2015

    Maria, this news is devastating. But your boyfriend and family are there to hold and comfort you. And we are here sending you our best hugs.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2015

    Maria,

    A huge THANK YOU for taking the daring step of this surgery for all of us. Trust me, all our hopes were riding with you, and we're all regrouping around you now.

    Grieving is hard work, and it takes time. Please give yourself plenty of room and loads of tenderness--YOU have not failed, that's for sure.

    Sent you a PM. Gentle hugs,
    Binney

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited May 2015

    Arm is wrapped up safe for the night. Living with it.

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

    Oh, Maria. I am SO sorry this is happening. Lymphedema sure does have a mind of its own. I am sending you a huge hug. I think we all understand how it is to have our hopes dashed by this crazy disease. We are all still hoping for a cure, and it sucks not to have one. Please hang in there - we are here to help lift you up.

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