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

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited September 2015

    My lymphedema is better overall but it is not a magic bullet. I have better skin quality, less swelling in my back and chest, and less swelling in my wrist. My mid and upper arm swelling persists. I do believe the surgery must have helped with my condition not worsening. I just flew back and forth to Montana and literally climbed a mountain while I was there. I flew and climbed without a sleeve without any worsening of symptoms. Something good is definitley happening. I made my choice about the sleeve beacuse I'm talking to a top researcher whose results aren't published yet. Please don't anyone chastise me in this forum for reaching out to the top experts on my own and following their advice using my own free will. The info shared with me was shared responsibility side by side with current published research and I made my choices. I also know that the Ashtanga Vinyasa yoga I am doing is helping immensely. There is always a noticeable difference after each class with a decrease in swelling. I'm not alone coming to this conclusion. I share these things to spread hope...not to be chastised or corrected. It is getting old. We all have free will to chose the treatments and therapies we choose. What I'm sharing is real and first hand for ME.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited September 2015

    Responding to the question above...my doctors felt my lymphedema was worsening at a surprising rate and felt that it certainly would worsen. My surgeon truly felt with the VLNT it would not likely worsen anywhere near as badly as it might without surgery and we had the hope it would improve. It has been stable and/or better most days for about a month now. I'm watching my sodium, my overall body weight, my water consumption, keeping my sugar consumption low, and being vigilant with my yoga. Right now I'm stable but still greatly dislike the way my arm looks. I have been hiding my arm in pictures since the site of it scares me and makes me look older and heavier all over. Super glad to be alive and NED though as always to fight this mess another day!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2015

    Oh I see you updated us here, thank

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2015
    Maria, if 'the absolutely guaranteed' treatment for LE were known, we'd all be doing it and we'd all be controlling, if not improving or curing our LE. My conclusion, especially after attending the recent World Congress of Lymphology, is that LE medicine is more art than science. So many mysteries yet to be solved! It leaves all of us to figure out what works best for us, and you are a very giving person to share what you have tried, what works, and especially your worries about whether you are benefiting from the surgery. Your candid reports add some valuable pieces to the puzzle of LE and its treatment. Thank you for continuing to keep us posted. And bravo for the mountain climbing! I wonder if the altitude and effort were making you do a lot of the deep belly breathing that we know moves lymph?
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  • Sannoliver1
    Sannoliver1 Member Posts: 25
    edited September 2015

    Mariasnow, do you mind sharing what the, as of yet unpublished, study you mentioned was referring to about compression?

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  • kriserts
    kriserts Member Posts: 224
    edited September 2015

    Question about the testing: I've had 2 consults with Dr. Dayan about the LNT but haven't decided to do anything yet, as my arm seems stable. About 2 years ago I had the dye test and an MRI. Would it seem reasonable to repeat those, to see if my lymphedema is progressing more than I think? (Dayan is out of my network now, I wouldn't know who to go to or who should order it.) How did you all monitor your lymphedema progression?

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

    Kriserts --- I sent you a message.

    Everyone, i updated on the lymph node transfer last weekend thread.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited October 2015

    Carol57, Interestingly my arm is still better than it has been since LE started today. I have very little LE below the elbow today - although always some. I really wish I knew what causes the improvements and flare-ups with more certainty to help others and myself. My boyfriend looked at my arm today and was amazed to see how good my lower arm looked. We both cheered "even if for just this one day" we said. I'm sincerely hoping surgery has kicked in and I will stay better and even further improve.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited October 2015

    I really wish I had some documentation to share, but it is just conversation between me and one of the PhD therapists on a couple of the active or recent studies. It is difficult for the study teams to get tangible things to publish that pass muster if they don't have years of solid data. One of the big issues is they don't get people to come back who have improved to be measured and evaluated and the other is people who aren't doing well don't want to come back either. My VLNT surgeon told me the idential thing. Many people on whom he has operated wont make the time for appointments to be evaluated or even fill out surveys. I have to admit, I am also guilty. Because it involved an overnight stay and I had just lost my mom, I totally blew off my 4-month post-surgery evaluation. They pushed me to go because I'm in a study, but I didn't. I couldn't miss anymore work. I am planning to make my 7-month. I know if I was doing worse, I would have found the time. The PT told me that this is what studies are proving out and and some published results will come down the line. I believe her as she has presented at several conferences and this is her life's work. She started when her mom a BC Survivor got lymphedema. It is just one person...but oh well, we all need to do what we can to educate ourselves however we can.

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

    Maria, I can relate to the no-follow-up problem. I was and am furious at how my breast surgeon looked me in the eye and said she has virtually no LE in her patient group. And the stats she quoted me for national averages when getting 'just' snb were a joke, but I didn't know it at the time. I really should have followed up with her a year after my surgery, if just to show her my arm and ask to be documented as a example of LE in her practice. But she's three hours away, and I just didn't want to deal with her, and so she has no clue about my LE...and I have helped her perpetuate her myth that nobody gets LE under her care. We are complicated human beings, aren't we? I do hope you will do your follow ups, to make sure you're being evaluated and of course, to add the the body of knowledge about what is still a new approach to treating LE.

    And I'm so glad you're seeing results!

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited October 2015

    I know my arm IS better...it just isn't magically cured. My doctor calls it "partial resolution." My skin is better and my flare-ups pass more quickly and without therapy. I also have less pain but I still do have some.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited October 2015

    I had a check-up with my surgeon this week so I will share my specific results. Prior to VLNT surgery I was 18.5% swollen. At my 6 month check-up I was 16.5% swollen. Prior to surgery I was wrapping heavily. Now I have not wrapped in many months and I'm not wearing compression any more. The biggest aspect of my results is that my hard is 50% less swollen than before surgery. My doctor believes my weight gain is really impacting my results as my new vessels have to fight their way through newly gained fat. I plan to focus more on taking the right actions to reduce my adipose tissue. It is likely my doc will want to do some lipo on me in 2016. He said I have some hard fibrotic tissue interfering with my new nodes truly being able to do their job fully.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2017

    bumping. Please give us your experiences. Bad or good we want them all. Thx for trying out the surgery. Your all so brave.

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  • MRock
    MRock Member Posts: 49
    edited November 2017

    Hello all,

    First of all, Happy Thanksgiving! I hope it's a beautiful day for you all.

    I have my first exploratory appointment with the LVA surgeon next Monday and I'm writing to ask for suggestions.

    The six points below are the questions I've come up with.

    If any of you have any more suggestions, I'd be very grateful to have them!

    • how many microsurgeries
    • immediate post operatory expectations (time off work, arm bandaged, etc.)
    • side effects, short /long term
    • percent success / failure (and how do they define those two terms in their practice)
    • number patients satisfied / dissatisfied
    • future without sleeve? night sleeve? physical therapy?


    I'm posting this in all three open threads on lymphedema microsurgery :

    LVA surgery - bypass surgery - Have you done it?

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

    Microsurgery after breast cancer treatment

    because I'm not sure who's on which.

    Thanks so much for any help and suggestions!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited January 2018

    reposting this for more input

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  • MRock
    MRock Member Posts: 49
    edited June 2018

    Hi All,

    I just wanted to drop in and say that there has been some activity happened about this topic on this page:

    Topic: LVA surgery - bypass surgery - Have you done it?

    I hope the link works.

    Gentle hugs and great summer vacations to all!

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