LVA surgery - bypass surgery - Have you done it?
Comments
-
I am extatic to hear all the wonderful words you have for Dr Chen - you took the words out of my mouth!!!!! He is an amazing, caring and wonderful man!!! If it wasn’t for my PS in IL paying attention to Dr Chen in a conference years ago I would never have had the opportunity to go to him. My PS encouraged me to at least hear Dr Chen out and after meeting him I was convinced this was something I had to try - now almost 5 years ago! It truly changed my life!!!
I am open too to try to find a way to advocate for this cause...not sure how else to spread the word but am open to helping ANY way I can! No one knows what the outcome will be but obviously it has helped quite a few so far! I was happy to be one of the 1st few patients of Dr Chen and was willing to take the chance - more people need his help and shouldn’t be afraid to try!!
I wish you all continued progress and hope every day is better than the day before!! I really need to reach out to him again for a 5 year follow up so he can continue to document progress with LVA!
Thanks for keeping this thread going!!!!!
Mary Jane
0 -
I'm a newbie here, but have been struggling with lymphedema since 10y. Had breast cancer at 26 y old, lymphedema started 1 y later.
Recently things have been getting gradually worse (reoccurring infections, more swelling, heavy feeling, stiff fingers,....)
I went to see a specialized surgeon here in my country (Belgium) for a bypass, but he was quite rude to me and I lost all hope of ever getting better for a while. But reading your stories gives me hope!!
A personal question: are any if you who have had the surgery on the arm, overweight? Or had the operation with the bypass refused because of weight?
My BMI is 30 (I know, my weight is a life long battle between 65 kg or 85 kg 🙄) and the surgeon dismissed me based on my current weight. He told me there's no way he could perform a successful operation on a person that's too fat.
Plus my difference was 'only' 230 ml. He said it was to little for the surgery, he had patients who were far worse off.
It still hurts though, even if it's 'only 230 ml'.
0 -
Absolutely ridiculous, Pixie. I'm at least 40 pounds overweight and there was never any mention of my weight!
0 -
Any updates on how people are doing after this surgery?
It seems that I might be developing lymphedema in my right arm.
This thread gives me hope.
0 -
My arm is great. I had forgotten to put my sleeve on one day after I showered and I went out and shoveled my driveway and front walk. In the past that would have been automatic swelling. I came back in and it was fine. Same with vacuuming. My last appointment showed that there is definitely lymph flow where Dr. Chen made connections. In addition, there was lymph flow in the top of my arm, a place where there had been none for many years. I was told I could start weaning myself away from wearing my sleeve but I actually like having it on. Dr. Chen told me that my arm will continue to get better for at least the next two years! So I have plenty of time to stop wearing it. Funny how I hated wearing it when I really needed to and now that I don't really need to, I don't mind having it on. Go figure!
0 -
Happy Trisha - excellent news!
Me too...LE is much reduced in left arm. Soooo happy I did the LVA. I know everyone is different but Dr. Chen is amazing and helped my surgeons in Singapore understand how to proceed.
A few weird things - I cant swim - it makes my arm crazy. And cold weather makes it worse (lucky I live on the equator 🤪)
Buttons - explore your options with caution and only get the best to advise you - Dr. Chen from Iowa. I am sorry to hear you have LE but I hope you can find a solution. Sending you hugs!
Prelude
0 -
Ladies, you are amazing! Thank you so much for keeping this post updated. I am waiting for a date for my LVA (it was scheduled for March but they canceled and I’m waiting for a new date!). I will be doing it with Dr. Dayan at MSK ( I LOVE him 😍 He is honestly the best, most caring doctor I’ve ever met). I did try to see Dr.Chen but he was too hard to get to and though I flew to see Dr. Chang in Chicago, we didn’t “click”.
Pixie16, I am still stage 0 (no visible swelling) and all the surgeons I’ve consulted say the earlier the LVA is performed, the better. Google Dr. Corinne Becker. She’s a pioneer in LVA and other LE surgeries. She practices in Paris. Maybe you could hop on a train and go see her?
0 -
I am still trying to get my surgery approved by my insurance. 3rd time denied. Peer to peer done, still won't approve it. This is with Dr. Chang in Chicago. I'm so frustrated.
0 -
Has anyone heard of Dr. Alexander T. Nguyen in Dallas. When I called MD Anderson they also referred me to him, letting me know that he started his practice here. Just wanted to checkin to see if anyone has had experience with or heard of him
Thanks!
Ann
0 -
Manuela, funny that you say that. I also went to see Dr. Chang for a consult, and we didn't click either! That's how I happily ended up in Iowa with Dr. Chen! And I had a consult with Dr. Becker in 2012, when she happened to be in NY! She had pioneered nodal transplant, and I had decided I did not want that sugery. I truly feel I ended up with the cream of the crop in Dr. Chen.
0 -
Help3, not sure where you are but I had my surgery done with Dr. Chen in Iowa and insurance ended up approving it. It may depend on which insurance you have. One of the ladies told me that she was denied by insurance 3 times but her case got progressively worse and they were able to document it with office records and it was finally approved. (That was with Dr. Chen.) Have you had medical studies done? Maybe if you have them repeated, if it shows worsening at all you might be able to get it approved. I will have my fingers crossed for you!
0 -
Ann, haven't heard of him but that doesn't mean anything. But please make sure you do your due dilligence and really research all the doctors and make sure you feel very comfortable with the one you pick. I did nonstop research on the different docs and went for several consultations before I ended up with my doctor. I read patient reviews thoroughly and also google the doctor's name and check out years of experience in the field. I also ask questions of the office, such as, how long has the doctor been performing the surgery and how many surgeries has he performed? What are his patient experiences? Have any ended up not working? Getting worse? My doctor explained to me that there are surgeons, and there are surgeons. Two doctors performing exactly the same surgery could end up with two different results. So you want to make sure you are going to the very best, in your estimation. Just my opinion. Please keep us posted!
0 -
Thanks for the advice, HappyTrisha! I will definitely do that! I would do anything to get my arm back to normal again. You all have really at least given me hope. Especially reading stories where y'all have had lymphedema for a while and the surgeries have still been successful!
0 -
Wow....nice to see this thread come alive again! Tomorrow is my 5 year anniversary of my LVA with Dr. Chen(U of Iowa) and I don’t wear a sleeve at all, except to fly! I still wear my glove daily but find I can go without it more than I need it - I think it’s a codependency or security blanket! My hand does get bad when I over do it but it is tolerable! I am so happy to hear others have been helped by the amazing Dr. Chen!! I am forever grateful to have been guided to him and know he will help many more because he cares!!!
0 -
Happy Trisha my insurance didn't deny my bypass saying it wasn't necessary, they denied it saying it was investigational unproven surgery. Dr. Changs office has appealed it twice.
0 -
Again, it may have to do with the particular insurance, or it may have to do with the particular state. When I was investigating all the doctors I could find, one of the surgeons in Maryland told me they had no problem with insurance covering LVA; the office of one of the top surgeons in Beverly Hills told me that insurance would not cover it; and mine ended up being covered. You might want to reach out a little bit further to see whether any other surgeons whom you may trust have had better luck with it. I did have a lot of testing done ahead of time, meaning before I even went to Iowa, so that may have helped in my case. I know that when I went to see Dr. Chang, I was told that I would have to sign a waiver form that said that if insurance wasn't willing to cover it, I would pick up the $5,000. Because I wasn't really pleased with my consult, it was the straw that caused me to keep looking.
0 -
Thank you for sharing this info. My LE got worst abotu 18 months ago. Do you all know if the fact that I had an infection in my LE tissues (cellulitis) is a contraindication for LVA? TIA
0 -
I seriously don't think so, but I am going to give you an email address of one of the best and most accessible LE surgeons around. If you email him your question, he will respond in pretty quick order. Once you get the answer, it will good if you can share it.
0 -
thank you so much! Will do!
0 -
wow, so I emailed Dr. Chen and not 2 hours later he was calling me! What an amazing guy he seems to be! he explained many things to me. The fact that I had cellulitis is not necessarily a "no-go". What determines it is how advanced the disease is.
I am planning a trip to Iowa for an evaluation and keeping my finger's crossed. Really wish I had seen this forum a few years ago. Thank you again!
0 -
MLmom, I am so happy for you!!! I don't have words enough to tell you what a phenomenal surgeon and human being Dr. Chen is. I am believing that he is going to be able to help you because he is so far ahead of the curve with LE treatment and surgery. Mjsgumbas was the guardian angel here who led me to Dr. Chen and she used words like amazing, caring, and wonderful. He's all that and more. He is so passionate about helping patients with LE, and he is caring beyond belief. And of course the icing on the cake is that he is the leader in the field, (at least as far as I'm concerned.) Things that many LE surgeons are still doing, he stopped doing a while ago and has come up with newer and better ways to treat LE.
I guess it's obvious that I think he's okay, ha ha. I will be going back in July for my one-year visit. I went back at three months and then at six. Believe me, there is no way I would be travelling half way across the country if I didn't feel I owed him so much for all he's done for me. I had LE for at least 13 years when I saw him, and he operated on me deftly, and successfully. Cannot wait to hear about your consult.
0 -
Just want to report something exciting. Today I decided to go without my compression sleeve altogether. I went to the gym and worked out, including lifting weights and using a lot of the arm exercise machines. My arm didn't swell at all!
I am so grateful for the researchers and the surgeons who have dedicated their lives to helping to eradicate LE!!!!!
0 -
great news Happy Trisha! Me too - do yoga and walking and lifting - no swell - self MLD daily just cos I am in the habit, bit other than that...low maintenance for now.
Bless Dr. Chen and my surgeons for returning some measure of quality of life to me 🙏😊
0 -
So happy for you PreludeSing! I just wish everyone with LE could be exposed to Dr. Chen. What an amazing surgeon!
I know what you mean about doing something because you're used to it. At this point I could probably be without my sleeve altogether since I'm supposed to decrease time using it every two weeks but I've gotten so used to having it on that I automatically put it on for the day! I'm sure it's not hurting me at all to do it but I think I'll start experimenting going without it altogether at some point. When I got up this morning my arm was not swollen at all, so I know that's a great sign, especially after all the wear and tear it got yesterday!
Since I had my surgery last July I've actually had to buy two new sleeves because each sleeve has gotten too big for me. I'm going to two events this weekend and it will be so great to be able to wear sleeveless dresses again. I don't remember the last time I did that! Aren't we so lucky to be here at a point in time when surgery is a viable option for LE? I think of all the people who had no option other that wrapping and bandaging and it breaks my heart for them.
0 -
absolutely agree Happy Trisha. absolutely agree!
0 -
Hi all! Anyone did VLVT instead of LVA?
I met with Dr. Chen yesterday. Love him. Period. I just do.
My LE is Intermediate with "stardust pattern" for most of my arm from hand to mid- upper arm, then linear pattern. He feels that I'm more likely to see significant results with Vessel Transfer (different from the Node transfer, which he no longer performs because of the risks). Anyway, there is not that much info on this anywhere online and I know he may be the only one doing it in the US. There is mention of it on Dr Koshima's website (Japan), but no studies that I can find.
I truly trust him and will probably go ahead with the surgery either way, but having some more info or feedback from patients would be helpful!
thanks
0 -
MLmom - I am so happy that you got to visit with Dr. Chen! He is so far advanced in the field that it's hard to keep up with him. I had never heard of VLVT until you mentioned it so I've been looking around to try to get some information on it. He just keeps coming up with bigger and better. I definitely understand your wanting to be able to get feedback on the procedure, and as I said, I will try to find what I can and let you know if I do find anything. With that said, my trust in his ability is so complete that I too would likely go ahead with any procedure he recommended even if I couldn't get a lot of feedback on it. I will be back for my next appointment in July and cannot wait to hear about VLVT and how it differs from LVA, etc. He is great about spending time and explaining things. I truly believe we are blessed to have him in our corner.
0 -
thank you!
I have emailed Mindy to see what info/feedback from previous patients she can find. If I remember correctly, Dr Chen said he has performed about 30 of the VLVT so far. I just read this entire Forum and I'm so excited for the possibilities for me and new survivors... I truly feel a calling to get the word out there! thank you to all of you for this thread that gave me hope of improving my lymphedema or at the very least slowing down the progression!
0 -
I'm so happy to hear about the successes from many of you. I am depressed that I cannot get my insurance to pay for the surgery. I have been appealing it for 2 years
0 -
Help3, have you gone to Dr. Chen? I ask because I know people have been successful in getting insurance approvals there. When I was searching for information on VLVT, I found a site with information written by one of Dr. Chen's patients, and she mentioned that she got insurance approval and that his office was very helpful in getting her approved. It may not do any good but if you can do it, I don't think you would be hurting yourself to at least have a consult with Dr. Chen. He is amazing and offers a variety of surgeries based on what he finds after they perform the spy test (also known as Indocyanine green). I had consults with both Drs. Chang and Chen and hands down my preference was Dr. Chen, for what he offered, for his cutting edge techniques, for the helpfulness of his office, for insurance coverage (this is anecdotal but it seems that Dr. Chen's office manages to get more patients approved. Again, just from what I remember reading.), his incredible intelligence, for his generosity of spirit in spending time and communicating thoroughly with his patients, and the list goes on. I absolutely understood MLmom when she said of Dr. Chen "Love him. Period. I just do." Helping patients with LE is his passion. It also may be Dr. Chang's, but I at least did not pick that up where with Dr. Chen it was absolutely obvious. To me, the man is a god.
http://www.lymphedemacommunity.com/blogs/7635/1660/lymphedema-treatment-options-that-work
0
