Talk with other about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.
Posted on: Feb 14, 2014 08:48PM
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!!!!
Posts 601 - 630 (672 total)
Aug 9, 2019 06:25PM Jiffrig wrote:
Has anyone had experience of Medicare covering either surgery
Aug 16, 2019 05:54PM Maygreen5 wrote:
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?
Aug 19, 2019 07:26AM melalymphatl wrote:
Dr Chen's e-mail address is - email@example.com. 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.
Aug 19, 2019 08:12AM MLmom wrote:
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
Aug 29, 2019 10:33PM MLmom wrote:
I’m about 2 weeks post “vascularized lymph vessel transfer”. All is well. My stitches are coming off on the 9th, 4 weeks post surgery.
With VLVT, some improvements May been seen right away, but we can expect changes up to 18-24 months later as well. So this is just the beginning for me... hopefully. Here is a comparison of my arms the morning of surgery and at 2 weeks post op. (I hope the picture shows up here...
What we can’t see on the picture is the absence of pitting in my elbow (yay!), the softness of my skin. Not more ”stretched out/tight skin”!!! I’m so happy!
Melalymphat, thanks for checking in!
Sep 3, 2019 06:12AM melalymphatl wrote:
That looks awesome! Sorry for the delayed response. We went to San Antonio Riverwalk for the holiday weekend. How is your leg healing from the lymph vessel removal? Are you able to keep you arm elevated all the time? Have you moved to Hope House?
Sep 5, 2019 12:47PM MLmom wrote:
the groin area is giving me a little grief these days, just some pain around the stitches so I need to slow down even more.. lol (no more walks for me). I've been lucky to have my mom here with me and so my arm is elevated pretty much all the time (probably not all night long though) except for a minute here and there to rest my shoulder... I highly recommend having a caregier otherwise you'll find yourself using that arm for too many little things...
Sep 5, 2019 01:02PM melalymphatl wrote:
MLmom - I know my situation is different than most of ya'll's since my lymphedema is my leg and not my arm. I don't think it's possible to keep my leg elevated for 4 weeks. Even if I had help. Watch walking too much or too fast. Or getting up and taking off too fast. My groin still hurts 2 years after having the lymph nodes removed if I take off too fast or my little dog steps on that scar.
Sep 5, 2019 01:09PM MLmom wrote:
I talked to a young man with primary lymphedema in his legs who had VLVT done about. 2 years ago. He said he was allowed to put his leg down 10 minutes every hour... 🤷🏼♀️ He is very generous with his time, PM me your email and I can give it to him so you can both chat,if you want.
Oct 6, 2019 11:38PM mellee wrote:
Has anyone had lymphovenous bypass surgery with Dr. Patel at USC? I consulted with him last week and am seriously considering it.
Any tips or advice about bypass surgery in general? I'll be reading through this thread, but would love to hear from people who have had it done.
Oct 16, 2019 04:42PM MLmom wrote:
hi, I’m doing well, surprisingly I am seeing much decrease in volume and tightened just above my elbow (I thought is was fat deposit because it never budged...)! So much that I have a little bit of the « old lady upper arm jiggle... and I’m excited about it! Lol
The rest of my arm is stable since the initial « deflating » 😂
Nov 13, 2019 02:22PM Candilea wrote:
I just wanted to inform interested people here that Dr. Chen will be leaving UIHC at the end of the year, and moving to Cleveland Clinic. He will continue to perform lymphedema-related surgeries there. He is my reconstructive surgeon, and I recently found out. Just fyi!
Nov 16, 2019 09:59AM PreludeSing wrote:
Thank you Candilea! That is great info for me to know 🙏😊
Nov 26, 2019 10:11AM mjsgumbas wrote:
Wow - thank you for the information!!!!!!
Dec 31, 2019 07:40PM mellee wrote:
Hi everyone. I had lymphovenous bypass on the 23rd with Ketan Patel and USC. His office has not been great with communication and education, so I'm hoping to crowdsource some info from people who have gone through it.
Did you keep compression bandaging (with foam and the works) following surgery? I was sent home with just a single bandage around the arm. They said I could wrap and rewrap "for comfort" but no guidance on whether bandaging helps with healing, encouraging new lymph channels, etc. What did you guys do? And for how long? From my understanding, I can start to wear my custom garments again around 3-4 weeks out.
Mar 5, 2020 03:27PM BlueGirlRedState wrote:
Awesome results MLmom, and hopes and wishes that you continue to do well. I'm still gathering information about surgery, how successful is it, and "how bad" does lymphedema need to be to consider it. For me it came on in the opposite arm, turns out a new tumor was found in R-axilla. Prior surgery for cancer on left side. If targeted therapy obliterates the tumor, hoping the lymphedema will go away. Right now wearing compression sleeve and glove, doing self massage 1-2x/day.
Ibrance and Arimidex. Supplements include Mg, D, biotin, C, Turmeric(Curcumin), Gluchosamine-Chondroitin,BoneUp(multi with Coligen),Thorne (another multi), Melatonine(at night). Compression sleeve and glove for lymphedema on R-side.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. . Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.
2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray
Jul 11, 2020 11:43AM InnaB2018 wrote:
My LVA surgery failed, sadly. Dr. Dayan from MSK tried to find a good lymphatic and couldn’t. He is an amazing doctor, so if he couldn’t find anything, nobody could’ve. Devastated now and am researching the next step