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

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

Posted on: Feb 15, 2014 03:48AM

mjsgumbas wrote:

I recently traveled to the University of Iowa to meet with Dr. Wei Chen a supermirosurgeon/plastic surgeon.  I was referred to him by my PS.  I had the Indocyanine Green Lymphography done and was amazed at what was seen both in my healthy arm and diseased arm.  I was diagnosed under the Campisi Staging at Stage 2 as my LE is, right now, centralized in my upper arm.  Although most of my swelling is in my hand, the Stardust and Splash patterns are confined to the area of my tricept.

Dr. Chen believes I would be an excellent candidate for LVA, as my symptoms have only been around about 6 months.  He believes better results come with early intervention.  I wear compression sleeves (often) and a glove almost all of my waking moments.  I do massage also.  It hasn't progressed, but it isn't relieved with any of the treatments.

In our lengthy 2 days clinic with Dr. Chen he explained in detail how the surgery is performed, showed us actual video and covered his results since he began performing this procedure.  His statistics have been: no patients symptoms worsened, 90% saw some form of relief and 10% of the 90% were cured.  There will still be therapy and garments for some time post-op, but the intent is to ease the necessity of these daily.

An 8 hr surgery - although minimally invasive - seems overwhelming.  But if they don't try - they won't know!  The surgery only effects the skin and fat layer - never reaches muscle, so the recovery/pain is nominal.

These surgeries have been performed in Asian countries for decades!!!!!!!!  With favorable results! 

I've tried to seach thru these threads to find someone who has had the procedure done and what the results were.  So, please let me know if you had success!!!!


 

Dx 4/1/2013, IDC, Right, 2cm, Stage IIB, Grade 2, 1/24 nodes, ER+/PR+, HER2- Surgery 4/25/2013 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right) Hormonal Therapy 5/29/2013 Surgery 11/7/2013 Reconstruction (right) Surgery 1/31/2014 Prophylactic ovary removal Hormonal Therapy 2/27/2015 Arimidex (anastrozole)
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Mar 29, 2017 07:33PM Frill wrote:

Brithael: (I hope I spelled your name right, I don't have my glasses on!) My Dr. Chang is in Houston, but his twin brother also does the same procedure up north, so if you're finding a Dr. Chang there, I suppose it could be him!

Here, they prefer softer skin that hasn't gotten fibrotic (I think that's the right term) to get better results, so I would say if you feel like you're getting worse, get thee to a hospital that frequently performs the surgery and has experienced surgeons. Also, try to follow all those LE rules. I find mine still is cranky if I'm not drinking enough water (esp that one) or I overuse my hand.

Please keep us posted with what happens!!!!

Dx 2/1/2015, LCIS, Left, Grade 1, ER- Dx 9/30/2015, ILC, Left, 6cm+, Stage IIIA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 11/19/2015 Mastectomy: Left Surgery 12/10/2015 Lymph node removal: Underarm/Axillary Chemotherapy 1/21/2016 Taxol (paclitaxel) Chemotherapy 4/21/2016 FAC Radiation Therapy 10/13/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/15/2017 Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Apr 23, 2017 05:52PM teach6 wrote:

I will have LVA surgery at the University of Iowa with Dr. Wei Chen in July. I had the Indocyanine Green Lymphography (spy) done and was diagnosed under the Campisi Staging at Stage 3. This stage surprised us as the swelling isn't extreme and I'm just a tear out of BC treatment. I had 14 nodes removed and had cording immediately after surgery. I had 33 radiation treatments after chemo. I wear compression sleeve/glove daily and use the the flexitouch pump many times a week. I will start using a night sleeve soon.

Please share any LVA recovery suggestions/ideas. I'm very excited about being proactive with this surgery- hope!

I am 47 years old, a mother of 2 teens and wife to a great guy. Dx 9/24/2015, IDC, Left, 2cm, Stage IIIA, Grade 2, 4/13 nodes, ER+/PR+, HER2- Surgery 10/14/2015 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 11/11/2015 AC + T (Taxol) Radiation Therapy 4/11/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 5/26/2016 Arimidex (anastrozole), Aromasin (exemestane)
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Apr 24, 2017 02:51AM Kicks wrote:

Help3 - you may have been put in the wrong compression level garments. Some of us are more sensitive to compression levels than others.

For me, I can only use low level compression garments - any 'heavier' causes major swelling quickly - especially in my hand.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Apr 24, 2017 10:26PM mjsgumbas wrote:

teach6 - wishing you all the best....you're in good hands with Dr. Chen, but be patient. That's the best advice I can give. Although I felt relief immediately (heaviness vanished), the bulk of the reduction in swelling took time. Over 3 years out, I don't wear my sleeve unless I fly and have been doing OK without wearing the glove from time to time. It did take several months and now years out of LVA I feel like it has even gotten better over time. Stay in touch and let everyone know how it goes for you!

Mary Jane

Dx 4/1/2013, IDC, Right, 2cm, Stage IIB, Grade 2, 1/24 nodes, ER+/PR+, HER2- Surgery 4/25/2013 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right) Hormonal Therapy 5/29/2013 Surgery 11/7/2013 Reconstruction (right) Surgery 1/31/2014 Prophylactic ovary removal Hormonal Therapy 2/27/2015 Arimidex (anastrozole)
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Apr 29, 2017 07:33AM GolferGirly wrote:

I had the LVA surgery in Oct 2014 by Dr. Peter Neligan at the University of WA.  He is apparently some authority on the microsurgery (wrote a book about it), at least in this area.  First of all, my insurance did not pay for the surgery...but the hospital/Dr. Neligan never sent me a bill.  Make sure you get in writing that the surgery is covered prior to surgery.  I was skeptical that the surgery would work because I felt I had a mild case of lymphedema in my left arm. Dr. Neligan said it could take a year to show improvement.  It was 1-1/2 years before I noticed a difference in my Left arm  - it was finally smaller than my right arm (I am right handed).  Prior to surgery left arm was bigger than right arm.  My swelling was mainly from elbow to upper arm.  I wear compression sleeve and gauntlet almost every day.  Unfortunately Dr. Neligan did not have enough interest in my case to follow up with me to know his surgery actually worked.  On a downward note ever since I recently (Nov '16) had DIEP flap surgery due to reconstructed left breast implant ruptured,  my lymphedema flared up again big time. I am still hopeful the swelling will subside over time.  These things take time.  I'd be happy to answer any questions about the surgery.

Dx 7/11/2012, ILC, Left, 6cm+, Stage IIIA, Grade 1, 1/4 nodes, ER+/PR+, HER2-
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Apr 29, 2017 07:50AM Nordy wrote:

Hi Everyone! I figured I would post here even though this is for LVA rather than VLNT. But I don't see any updates on my notices for VLNT, so you are all stuck with me.

Here is my history - I developed RUE lymphedema shortly after my final radiation treatment in 2006... from a STEP class! My hand exploded! I was able to get my hand down and just wear compression on my arm and wrap nightly for almost 9 years. I had gotten my arm to a pretty good place - but was never able to wear compression that was too tight nor with silicone tops (too much back flow into my hand). In 2014, I had a breast MRI with contrast to check out an area of concern in my reconstructed breast... and wound up having an autoimmune reaction to the contrast. This caused my hand to swell up to a gigantic size. Not only was it swollen, but it was so incredibly painful that I could not move my fourth or fifth fingers. NOTE --- My IV was NOT on my lymphedema side.* Anyway, I was devastated. I had been fighting my insurance company for 4 years to put through approval for the VLNT. I had had consults with both Dr. Granzow in CA and Dr. Dayan in NYC. I had fought my insurance and gotten them to change part of the policy that stated that all breast cancer related treatment had to be by done by in-network doctors (this was the ONLY diagnosis with this stipulation and I fought it on grounds of discrimination and won). I was seriously suicidal... and I am not a depressed person. But I now know what it feels like to be so broken that you never want to get out of bed. Anyway - steroids helped bring down the initial pain from the reaction, but I was still left with a gigantic hand. I started my fight again and FINALLY, FINALLY got those b*stards to approve my surgery. I had VLNT from the left groin to my right forearm with Dr. Joseph Dayan in September of 2015. It was one of the more difficult surgeries I have had in terms of pain... I think just because of the cutting into an edematous arm brings its own host of difficulties. So... for the past 19 months I have had an extreme lesson in patience. My arm has always been like playing the lottery --- things that work for the normal lymphedema population don't necessarily work for me. Many respond to compression really well... my arm has to have light compression or it is a disaster. So, since my surgery - once past the acute stage and then the wrapping for 2 months, I have had to play with what works to help my arm. Dr. Dayan had said it could take up to two years to see the full results of the VLNT. I have had periods of being down and thinking it hasn't worked to periods of frustration, to periods of hopefulness. Well, I have to say, after all of this time, I am starting to see veins. And knuckles. My measurements are coming down overall. It is not that nothing makes them come back up - but overall they are down. I am able to go a day or two every now and then without a sleeve without my arm becoming a weighted giant disaster. I am making my appointments for August to go see Dr. Dayan again for follow up and testing. I can't wait for him to see my arm. I would do it all again in a heartbeat. It is not perfect. But it is soooo much better than it had been.

If any of you are thinking of doing this - go to multiple consults, ask questions and fight like hell to get it covered. BUT, find someone with experience. There was a local guy where I live that had just started doing them - I asked too many questions so he didn't want me as a patient - thank GOD. It was a huge blessing, because then my insurance could not dictate that I go to him. Dr. Dayan ended up being in network anyway. I have zero regrets... except that I could not manage to get it approved sooner.

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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May 1, 2017 07:21PM kriserts wrote:

I've been thinking about you and wondering how it's going, Nordy. Thanks for the report!

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May 2, 2017 06:45PM HappyTrisha wrote:

Hey Nordy, msjgumbas, et al! Though I haven't posted in quite a while, I never stopped on my journey to find some kind of surgery for my LE. Well strangely enough, I will be meeting with Dr. David Chang at the U. of Chicago on June 5th. He had shut me down several years ago because the results of my lymphocintigraphy indicated that I didn't have LE. I was quite angry about it because it is without question that I have LE. So I continued to search and read and research and ended up meeting with Dr. Mark Smith at Mount Sinai Beth Israel Hospital in New York last summer and had lymphocintigraphy repeated. Their test was a lot more intricate than the one I had done in RI. This was a two-day test and included legs and arms, though me LE is confined to my right arm. Lo and behold, LE was indicated (eye roll). I wanted to stay with Dr. Smith based on his reputation and was going to set up an appointment for the spy test, but it so happened that he was switching hospitals the week after my appointment and wasn't going to be set up to see patients until some time in the fall. In addition, he was moving to Long Island, I believe, and that was nowhere near as accessible for me as NYC, since I like taking the train. Anyhoo, that once again sent me on my journey. So I continued to search and read and research and came full circle to Dr. Chang's name. I emailed their office and they sent me a questionnaire to fill out, plus they wanted pictures. They said Dr. Chang would evaluate what I sent back and if he felt I was a suitable candidate, I'd hear from them. Well they called within 48 hours to set up an appointment, so it's a go. I asked if it was possible for me to have the appointment and surgery in the same period of time but they said no. I guess he's booked for surgery for several months and so I would have to wait. (I want the LVA, by the way. I do NOT want the node transfer. I hope Dr. Chang agrees...)

I found that there were doctors now performing the surgery in Boston. I almost considered making an appointment. I mean, how convenient would that be! But for something like this, I want it done by a seasoned professional in the field. So Chicago it will be!

I will now start reading this thread where I left off. I did continue to read but at some point decided to spend all my time searching and reading and researching, ha ha.

Best to all Smile

Trisha

I'M DOWN WITH CHEMO!
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May 18, 2017 04:53PM Amapola36 wrote:

I went for my lymphography yesterday with Dr. Dayan at MSK. He was sooooooooooo nice and willing to answer all my questions. He said they believe Lymphedema is an inflammatory response as opposed to plumbing issues and that they are working on a cream/pills and hopefully something will come out in the next year or two. He saw me with 3 other people. One lab director who is also studying lymphedema at MSK, and two visiting surgeons from other hospitals that are learning about LVA and LNT to start procedures in their own hospitals. That means there is more interest and hopefully more studies/drugs!

It was so cool to see my lymph flow, the nerd in me was ecstatic! LOL He said I have two small blockages, one in my elbow and one in my upper arm. He recommended twice a year lymphographys for now, as opposed to surgery, unless I start to delovelop swelling/more blockages (I only have a very small amount of swelling/tightness in two fingers, for now... weirdly, no blockage in the hand... but the lymphography didn't show my fingers so he said there might be some blockage there...).

I would say, if you have lymphedema, and are able to see a surgeon who specializes in LVA and LNT, even if you are not considering surgery, go. You can at least know what's in there, ask questions, and then decide. It was very helpful/calming for me!


Oncotype score 16. Luminal A. Still landed in Chemo (CMF). Nothing but good times ahead! :) Dx 10/18/2016, IDC, Left, 2cm, Stage IB, Grade 2, 1/16 nodes, ER+/PR+, HER2-
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May 19, 2017 05:23PM Nordy wrote:

Dr. Dayan is the best. My spy studies presurgically showed complete blockage of the my right arm. There was nothing... :( I never went back for my one year post op as my husband was transitioning jobs twice last year, insurance was a mess, and money was tight. I am headed there in August and look forward to seeing how things are. As for the inflammatory response.... absolutely. I just had to be on steroids for a procedure that I had and it totally benefited my arm. Too bad there are too many side effects to steroids! i would want to be on them all the time. But that leads me to think I should be doing my best to be on an anti inflammatory diet.

Happy Trishia - good luck to you! I don't check in here often, but I will try to check back in a couple months to see what you end up doing.

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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May 23, 2017 06:10AM SusanRachel wrote:

I am at almost nine months post op from my VLNT. I am finally starting to see a little improvement in my arm. That makes me hopeful that maybe someday I will be able to go without the sleeve for a few hours. My definition of success before the surgery was being able to go without it for four hours. I can go about one right now before my arm starts hurting. Baby steps, right?

A few other things being looked at for the inflammation are two medications. One is available here, but is another one that isn't good for long term use. The study is pending publication. The other is used in Japan but hasn't be cleared by the FDA here. It is in clinical trials.

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