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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 14, 2014 05:48PM

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 4/24/2013 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right) Hormonal Therapy 5/28/2013 Surgery 11/6/2013 Reconstruction (right) Surgery 1/30/2014 Prophylactic ovary removal Hormonal Therapy 2/26/2015 Arimidex (anastrozole)
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Aug 2, 2019 03:14AM melalymphatl wrote:

MLmom - That is awesome news! I'm sure that is a huge weight. You can go into this without that stress. Please keep us posted.

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Aug 9, 2019 04:19AM melalymphatl wrote:

MLmom - Just wanted to wish you good luck. I'm assuming you are heading up this weekend. I am praying your leg will be good and you can get the vessel from it. I hope the surgery goes well. Let us know how you are doing.

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Aug 9, 2019 03:25PM Jiffrig wrote:

Has anyone had experience of Medicare covering either surgery

Dx 7/15/2016, IDC, Right, <1cm, Stage IIA, Grade 2, 1/22 nodes, ER+/PR+, HER2- Chemotherapy 8/2/2016 AC + T (Taxol) Surgery 12/12/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 3/6/2017 External: Lymph nodes, Chest wall Hormonal Therapy 4/1/2017 Arimidex (anastrozole) Surgery 7/29/2017 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Aug 10, 2019 06:53AM MLmom wrote:

melalymphat - thank you! I can't wait to update you all!

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Aug 13, 2019 03:23AM melalymphatl wrote:

MLmom - I don't know if you'll be checking this forum while in IA. I just wanted you to know I'm thinking about you and hoping for the very best outcome today.

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Aug 16, 2019 02:54PM Maygreen5 wrote:

Hi There.

I have read through most of the thread and I would like to get in touch with Dr. Chen, as most of you have said such great things about him. Does anyone have contact information for him? Is there anyone else that’s doing this kind of surgery that is just as good? Or is he the best?

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Aug 19, 2019 04:26AM melalymphatl wrote:

Dr Chen's e-mail address is - wei-chen@uiowa.edu. His assistant is Mindy Bowen. Her number is 319-384-6070. I haven't met Dr Chen yet but I have talked to him on the phone several times. He is very responsive and very knowledgeable. I started out with Dr Cheng at Emory and spent nearly a year waiting on her to get insurance to cover it. I would definitely not recommend her. I waited 4 months to meet with Dr Fortner at the Mayo Clinic in Jacksonville, FL. I didn't like him and he mentioned during our meeting if it didn't work out with him he would highly recommend Dr Chen. So I started looking for reviews on Dr Chen. That's how I found this forum and all the glowing reviews on him. I also found glowing reviews in here for a doctor in NY. The doctor who started these procedures and is supposed to be great is Dr Chang in Chicago. He started at MD Anderson in TX but moved to Chicago a couple years ago. But I found unflattering comments in this forum on him. Not really due to his ability but more about his personality. Dr Chen does 3 different surgeries and does testing to determine which is best suited to you. Most of the micro surgeons only perform 1 surgery so that is the 1 that you will get if you go to them. Dr Chen said he has gotten my insurance company to approve the procedures. But, of course, he can't guarantee it in my case. I have not found anyone else to say that. I did talk to Dr Chang's assistant and she said they had no experience with my insurance company. Dr Chen's hospital offers a self pay option for the LVA procedure if insurance doesn't cover it. It's between $18,000 - $24,000. Emory quoted me $128,000. Dr Chen is now doing a lymph vessel transplant that is having great results and it doesn't involved moving a lymph node. They have had no issues getting insurance to approve it. My insurance has already said they would cover that procedure if that is the one that he decides I need. Several people on this forum have had the surgeries perform by Dr Chen. So they can speak directly about their experiences. MLmom had the lymph vessel transplant last Tue. I am hoping we hear from her with an update soon. I go on Nov 11 for a full day of testing and will meet Dr Chen. He will tell me then what procedure he recommends. Then the surgery will be scheduled for 3 months out. So Feb - Mar.

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Aug 19, 2019 05:12AM MLmom wrote:

Hi all!

Yes I had my procedure (lymph vessel transfer) done on Tuesday by Dr Chen in Iowa. On Monday they performed the SPY test on my legs to assure that my lymphatic system there was in no way compromised prior to surgery and CT scan to find the ideal donor site. Turns out my lymph in legs are perfect and my right side appeared better than left (groin) for the donor site. My surgery lasted just under 6 hours as expected. He did find that my blood vessels are unusually small and had to pounder for several minutes in OR on how to proceed. He ended up going ahead as planned. I was in hospital for 5 Days which appears to be what he prefers for most VLVT. I cant say enough Of dr Chen and his/the hospital staff. He came by at least once daily and many “residents” did too.

I had very minimal pain (burning in groin) otherwise basically no pain but I know everyone is different. My hand and wrist became skinnier right away and I can now feel my forearm bone for the whole length without the pitting... we can expect improvements for up to 2 years, so immediate “deflating” is not the goal with VLVT.

Thanks for cheering me on MElalymph. Dr Chen is truly one of a kind! You will love him in person just as much as on the phone. He always takes all the time needed to explain and answer question

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Aug 19, 2019 05:50AM melalymphatl wrote:

That's awesome! I am so truly happy for you. I pray your continue to see results. I know you are staying there for the month. Take care.

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Aug 19, 2019 05:53AM melalymphatl wrote:

I forgot to ask. Are you staying at Hope House?

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Aug 19, 2019 05:59AM MLmom wrote:

MElalymph

I will be at hope lodge starting Wednesday. It’s a beautiful plac

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