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All TopicsForum: Lymphedema → Topic: Had VLNT or LVA? Please share here or message me!

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

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Mar 25, 2015 02:21AM

Nordy wrote:

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!


Do or do not. There is no try. (Yoda!) 2 large positive nodes before neoadjuvant chemo - all nodes negative after chemo Dx 4/21/2005, IDC, 3cm, Stage IIB, Grade 3, 0/12 nodes, ER-/PR-, HER2-
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Posts 61 - 75 (75 total)

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Sep 29, 2015 11:33PM ahdjdbcjdjdbkf wrote:

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!

Dx 3/2/2012, IDC, Right, 3cm, Stage IIA, Grade 3, 1/12 nodes, ER-/PR-, HER2+ (FISH) Dx 3/2/2012, IDC, 1cm, Stage IIA, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Surgery 3/23/2012 Mastectomy: Left, Right Chemotherapy 4/6/2012 AC + T (Taxol) Targeted Therapy 6/28/2012 Herceptin (trastuzumab) Radiation Therapy 10/8/2012 3DCRT: Breast, Lymph nodes Surgery 1/28/2013 Reconstruction (left); Reconstruction (right) Surgery 8/7/2013 Reconstruction (right): Latissimus dorsi flap Surgery 8/7/2013 Reconstruction (left) Surgery 2/25/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Sep 29, 2015 11:38PM hugz4u wrote:

Oh I see you updated us here, thank

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Sep 29, 2015 11:45PM carol57 wrote:

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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Sep 30, 2015 11:03AM Sannoliver1 wrote:

Mariasnow, do you mind sharing what the, as of yet unpublished, study you mentioned was referring to about compression?

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Sep 30, 2015 06:08PM kriserts wrote:

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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Oct 2, 2015 01:45AM Nordy wrote:

Kriserts --- I sent you a message.

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

Do or do not. There is no try. (Yoda!) 2 large positive nodes before neoadjuvant chemo - all nodes negative after chemo Dx 4/21/2005, IDC, 3cm, Stage IIB, Grade 3, 0/12 nodes, ER-/PR-, HER2-
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Oct 2, 2015 11:25PM ahdjdbcjdjdbkf wrote:

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.

Dx 3/2/2012, IDC, Right, 3cm, Stage IIA, Grade 3, 1/12 nodes, ER-/PR-, HER2+ (FISH) Dx 3/2/2012, IDC, 1cm, Stage IIA, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Surgery 3/23/2012 Mastectomy: Left, Right Chemotherapy 4/6/2012 AC + T (Taxol) Targeted Therapy 6/28/2012 Herceptin (trastuzumab) Radiation Therapy 10/8/2012 3DCRT: Breast, Lymph nodes Surgery 1/28/2013 Reconstruction (left); Reconstruction (right) Surgery 8/7/2013 Reconstruction (right): Latissimus dorsi flap Surgery 8/7/2013 Reconstruction (left) Surgery 2/25/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Oct 2, 2015 11:35PM ahdjdbcjdjdbkf wrote:

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.

Dx 3/2/2012, IDC, Right, 3cm, Stage IIA, Grade 3, 1/12 nodes, ER-/PR-, HER2+ (FISH) Dx 3/2/2012, IDC, 1cm, Stage IIA, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Surgery 3/23/2012 Mastectomy: Left, Right Chemotherapy 4/6/2012 AC + T (Taxol) Targeted Therapy 6/28/2012 Herceptin (trastuzumab) Radiation Therapy 10/8/2012 3DCRT: Breast, Lymph nodes Surgery 1/28/2013 Reconstruction (left); Reconstruction (right) Surgery 8/7/2013 Reconstruction (right): Latissimus dorsi flap Surgery 8/7/2013 Reconstruction (left) Surgery 2/25/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Oct 3, 2015 02:02AM carol57 wrote:

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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Oct 8, 2015 01:07AM ahdjdbcjdjdbkf wrote:

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.

Dx 3/2/2012, IDC, Right, 3cm, Stage IIA, Grade 3, 1/12 nodes, ER-/PR-, HER2+ (FISH) Dx 3/2/2012, IDC, 1cm, Stage IIA, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Surgery 3/23/2012 Mastectomy: Left, Right Chemotherapy 4/6/2012 AC + T (Taxol) Targeted Therapy 6/28/2012 Herceptin (trastuzumab) Radiation Therapy 10/8/2012 3DCRT: Breast, Lymph nodes Surgery 1/28/2013 Reconstruction (left); Reconstruction (right) Surgery 8/7/2013 Reconstruction (right): Latissimus dorsi flap Surgery 8/7/2013 Reconstruction (left) Surgery 2/25/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Oct 22, 2015 06:57AM ahdjdbcjdjdbkf wrote:

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.

Dx 3/2/2012, IDC, Right, 3cm, Stage IIA, Grade 3, 1/12 nodes, ER-/PR-, HER2+ (FISH) Dx 3/2/2012, IDC, 1cm, Stage IIA, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Surgery 3/23/2012 Mastectomy: Left, Right Chemotherapy 4/6/2012 AC + T (Taxol) Targeted Therapy 6/28/2012 Herceptin (trastuzumab) Radiation Therapy 10/8/2012 3DCRT: Breast, Lymph nodes Surgery 1/28/2013 Reconstruction (left); Reconstruction (right) Surgery 8/7/2013 Reconstruction (right): Latissimus dorsi flap Surgery 8/7/2013 Reconstruction (left) Surgery 2/25/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Sep 14, 2017 01:57AM hugz4u wrote:

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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Nov 23, 2017 10:54PM MRock wrote:

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!

Dx 7/2015, ILC, Left, 4cm, Stage IIIC, 32/33 nodes, ER+/PR+, HER2- Radiation Therapy External: Lymph nodes, Chest wall Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Mastectomy: Left Hormonal Therapy Femara (letrozole)
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Jan 11, 2018 09:06AM hugz4u wrote:

reposting this for more input

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Jun 13, 2018 02:03PM MRock wrote:

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!

Dx 7/2015, ILC, Left, 4cm, Stage IIIC, 32/33 nodes, ER+/PR+, HER2- Radiation Therapy External: Lymph nodes, Chest wall Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Mastectomy: Left Hormonal Therapy Femara (letrozole)

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