Posted on: Feb 14, 2014 05:48PM
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 541 - 570 (625 total)
May 20, 2019 11:27AM Manuella wrote:
Just had my LVA performed by Dr. Dayan at MSK (5 days ago). He made two bypasses and my arm/hand look almost back to normal! Hand is still a bit swollen but much less. I can see veins and tendons and all my knuckles! So so so very grateful! Three weeks before my surgery I went from pre-clinical to full blown LE (my sleeve was strangling me at the wrist and I think this caused the flare). I couldn’t see my knuckles, my pinky and ring finger were like 30% bigger, I couldn’t see veins/tendons in my hand and forearm. I go for post-op Thursday. I have my fingers crossed all looks good (I have a weird rash near the each incision which I’m to put hydrocortisone on... fingers crossed).
I hope my hand will keep getting better. How have those of you with hand LE done after LVA?
May 20, 2019 05:40PM Help3 wrote:
I am in my last appeal now. I have not been to Dr. Chen or Dayan. I'm looking at flight costs to go to NY or Iowa without any guarantee that my insurance will cover,(as they havent with 2 years of appeals with Dr Chang amd myself. Not sure which step to take
Who had a huge difference?
May 20, 2019 06:40PM Help3 wrote:
what is the trial at MSK..are they still taking people?
May 20, 2019 07:54PM HappyTrisha wrote:
I would say that you could consider the fact that I had LE for at least 13 years and had successful surgery very impressive. That said, Dr. Dayan is an excellent surgeon and has a great reputation. I flew to Iowa without any assurances that insurance would cover my surgery. But I flew to Chicago with the same lack of assurances and to New York. I am assuming that you've already had lymphoscintigraphy at the least. You might consider sending all of your records to both doctors and ask if they can tell you which surgery they would recommend based on your records. (I don't know if they will do that, but it would be a start.) You might also contact both offices and ask what kind of luck they have had with insurance covering the various surgeries. They might even be able to tell you about your specific insurance. Just a few thoughts. Also, if Delta airlines flies from wherever you are to either location, I'd recommend flying Delta. They give a discount if you are flying for medical purposes. Good luck whatever you do.
May 21, 2019 04:05AM Help3 wrote:
Happy Trisha. That is awesome that you had such good results after so long! I have had lymphosintigraphy and Dr chang said i was a good candidate for the bypass and also lymph node transplant. I've also gone to John Hopkins and they also said I'm a good candidate. I just can't get my insurance to pay. I'm beyond frustrated as it is worsening and it doesn't have to.
May 21, 2019 08:15AM - edited May 21, 2019 08:16AM by Manuella
I PMd this to Help3 but posting here in case it is of help to others:
Memorial Sloan Kettering Cancer Center: “For years, our dedicated laboratory, which is funded by grants from the National Institutes of Health, the Department of Defense, and other national sources, has investigated the factors that can contribute to development of the disease. There are no other cancer centers with an active lymphedema surgical program supported by a dedicated lymphedema laboratory.“
They are doing various LE studies, different types of surgeries and also working on a drug. I don't know if it may be easier to get insurance approval bc it's MSK but it's worth a shot.
Dr. Dayan is the most compassionate, caring, wonderful doctor I have ever met. He has a gift and is working tirelessly to help find a cure.
For the study: every three months I fill out questionnaires and every six months I get measured, they take pics, they weigh my arms and also take body weight/BMI, they do something with these electric thingys (painless) and they do an ICG. I also had an LVA and donated skin tissue (half an inch?) from both my arms and did a DNA test. There is a surgical and non-surgical part of the study.
May 25, 2019 07:25PM Help3 wrote:
FINALLY after 2 years of appeals I have won! My surgery lva and lymph node transplant have been approved!
May 26, 2019 06:42AM Help3 wrote:
I I don't have my date yet. Hopefully in July when my paid time off starts over for the year. I will be traveling from North Carolina to Chicago. I've obviously already had my first consult and Dr. Chang thought I was a good candidate but I am wondering what happens from here. How many flights to Chicago should I expect..what kind of hospital stay...restrictions etc. Even though it will now be covered by insurance I know it will still be a very expensive undertaking between plane tickets, hotel costs, coinsurance payments, etc. How was it for those of you that have done this?
May 26, 2019 07:18AM HappyTrisha wrote:
You're asking the wrong people. You need to be asking those questions to Dr. Chang's office. Every doctor operates (so to speak) differently. Also, be sure that your LVA is covered. When I went to Dr. Chang, I was told that insurance would cover node transplant but might not cover LVA and that I had to sign a release saying that I would pay the $5000 freight if insurance turned it down. That was a while ago so maybe LVA is being routinely covered now.
May 26, 2019 08:44AM Help3 wrote:
Originally it was all denied but this week they approved both.
I just thought there was a "usual" but maybe not. I should hear from them this week then I will know more.
May 26, 2019 01:29PM SpecialK wrote:
help3 - possible lodging in Chicagohelp here:
There are some charitable organizations that fly patients to and from medical treatment -you can find local ones by Google. Here is some airline info:
May 27, 2019 11:19AM Help3 wrote:
thanks special k!
May 29, 2019 09:57AM Manuella wrote:
Just got back from my LVA 2 week post-op with Dr. Dayan. Everything looks good and now I go back every six months for a couple of years and then every year after that till forever :) Sooo happy. My hand is almost back to normal. I'd say it's 90% normal in the morning and maybe 75-80% at night if I've been cooking a lot or moving a lot in the heat. It's much better in cooler days.
He did two bypasses in the two blockages he found in my forearm. He says that if any new swelling develops we could do more LVAs in the future.
I can slowly go back to the gym and after 4 weeks no more lifting restrictions.
I am so so grateful and feel so very blessed. I LOVE Dr. Dayan and his whole team. They are wonderful and caring people who are working tirelessly to help us Lymphies. God bless them! ❤️❤️❤️
I’ll try to update every so often. This post gave me so much info and so much hope. I want to pay it forwards. Big hugs, everyone
Jun 10, 2019 08:17AM melalymphatl wrote:
I just found this board. I hope it is OK that I joined. I didn't get lymphedema because of breast cancer. I got it because of melanoma surgery. They only removed 2 lymph nodes but I immediately started swelling as soon as I was allowed to put weight on my leg. And my lymphedema is in my leg. I've found most people have it in an arm because of breast cancer surgery. I have been 2 so many doctors and am very frustrated. I referred myself to an oncologist at Emory in Atlanta and she has been awesome getting me with doctors. My infectious disease doctor changed my diagnosis to refractory lymphedema since mine does not respond to the normal therapies and he has put me on a daily antibiotic since I had 6 cellulitis infections in 1 year. I had selected a microsurgeon at Emory (Dr Angela Cheng). It took 4 months to get the appointment. Then it took her nearly 2 months to get around to submitting it to insurance. Of course, it was denied. Then she took another month to submit the appeal. It was also denied. But when I got what she submitted I couldn't blame them. I would have denied me too. I called her out on not caring and not doing what needed to be done and she then said she would going to submit the next appeal and would include my letter and that of the infectious disease doctor. When I followed up I got a nasty response and just gave up. My ID suggested going to the Mayo Clinic in Jacksonville. It took 2 1/2 months to get that appointment. It was last Thursday. I saw Dr Forte. He was fine but as noted by someone else I just didn't "click" with him. He saw an article that I had with my mountain of paperwork I brought that was an interview with Dr Wei Chen. He commented that he would highly recommend going to Dr Chen if I decided not to go forward with him. I thought that was odd but decided that I should do some research on Dr Chen. That's how I found this board. I also found his e-mail address and took a chance sending him the shortest version of my situation I could. He immediately responded that he could help me but was on an academic trip right now and would call me in a couple days. I thanked him for his very prompt response. Then half an hour later he called me on my cell phone. He said he had a few minutes and didn't want me to have to wait. He gave me a lot of very good information and a lot to think about. He will call me again in a few days but said he would have his clinical nurse go ahead and call me before then. I am going to go forward with Dr Chen. Thank you all for your information.
Jun 10, 2019 08:30AM MLmom wrote:
so glad you got in touch with Dr.Chen! He is an amazing and caring human being...
I had the chance to chat with a young man who had Vessel transfer surgery on his leg by Dr Chen.He had primary lymphedema (born with it) and had great results so far.
I believe that if anyone can help you it’s Dr Chen.
Keep us in the loop!
Jun 10, 2019 08:30AM HappyTrisha wrote:
Good waiters get good tips. YOU HAVE FOUND THE BEST BY FAR. Congratulations on making it to Dr. Chen. For all the frustration you've had to go through, you'll find that it has all been worth it because you will get the outcome you're looking for, and in the process, you will be treated with the utmost respect and be well taken care of by Dr. Chen, his entire staff, and also the University of Iowa Hospital system. The doctor is a complete genius and a total humanitarian. (When you find one surgeon taking the time to recommend another, you know you're going with the best.) Good luck, and please keep us posted!
Jun 10, 2019 08:56AM Spookiesmom wrote:
I got the short straw. 7 years ago, I had bmx, 11 nodes removed. Woke up from surgery with LE in non dominant arm. Did all the recommended things, just decided to ignore it.
Well, cancer came back in other side. 7 nodes out. 2 days later was nearly impossible to flex dominant hand. Doing rads now, 15 more to go.
RO is head of radiation department at moffitt. He says they are doing the surgery there.
Special K, have you heard anything about it? I’m undecided if I want to do this. How long is too long to wait? Such a drive over there😂.
Jun 10, 2019 07:36PM - edited Jun 11, 2019 05:54AM by SpecialK
spookiesmom - ugh on your new issues, so sorry you are experiencing problems. I received my initial diagnosis and lymphedema treatment at Moffitt. Had a flare and went back for PT but they now funnel everyone seeking LE treatment through an assessment by one of their micro vascular PS to see if you are a candidate for bypass surgery - so yes, they are doing it at Moffitt. I had the complete workup, and am a candidate, but have declined the surgery for the moment because I am in a period of good control. The doc is very nice, seems thorough, but I have no idea about his reputation in regards to this surgery, I can PM you his name if you're interested. I believe they conduct the assessment once a month, or that is what they were doing when they first introduced this surgery at Moffitt, they may be doing it more often now.
Jun 11, 2019 04:31AM Spookiesmom wrote:
I saw PCP yesterday asked him about it. Absolutely not! He’s dead set against it for me. His reasons made some sense, I just wanted his opinion. I really didn’t want to do it, more surgery, infection risk, the drive. Malfunction junction. So it’s off the table. Thanks anyway ❤️❤️
Jun 11, 2019 06:01AM - edited Jun 19, 2019 01:47PM by SpecialK
spookiesmom - glad you had a visit with your PCP, was there any suggestion about how to deal with your flexing difficulty? Maybe PT? One of the reasons I declined the surgery is for the reasons you mentioned - I'm a Murphy's Law patient - if it can go wrong, it will. If I do bypass I would prefer to go and see Dr Chen in Iowa. Not sure how my insurance company will respond though if there is a surgeon who does this right in my backyard. Bleh. I hope things improve for you ASAP, and I'm just across the bridge if you need anything.
Jun 19, 2019 07:24AM melalymphatl wrote:
I'm trying to work thru the upfront insurance stuff before setting my appointment. I've talked to Dr Chen a couple of times now. His RN sent me the self-pay info for the LVA. I am waiting on the info for the lymph vessel transfer since I don't know which procedure will be the best one yet. I have Humana insurance and Dr Chen and the hospital are not in network. So unless I can get them to get signed up to be in network (which I doubt), I will have a $5000 deductible and still have to pay 30%. This, of course, assumes they will approve paying for the surgery. They denied when Emory submitted but she did a terrible job explaining the medical necessity. It's looking like the self-pay may be my only option. It's expensive but considerably less than Emory quoted. Dr Chen has agreed to do all my testing and the consultation in one day visit since I have to travel from Atlanta. Then I would have to return for the surgery later.
I've seen a couple people's comments about not wanting to go forward with the surgery for various concerns. Yesterday when I spoke with Dr Chen he made the comment that if he or anyone in his family got lymphedema he would not wait and try the therapies. He would have the surgery. He said the sooner you have it done the better chance you have for complete cure. The therapy is just a band-aid. I'm concerned since it has taken nearly 2 years just to get to him. My leg isn't that large since I take a daily antibiotic to control the cellulitis infections. So it is holding it's own for now. When I saw my oncologist on Monday she came in the door saying "so you are going to be on an antibiotic indefinitely". I was like I hope not. She was commenting because insurance has denied my claim. I told I didn't believe it was my insurance, I believe it was the surgeon. They work for the same hospital. She said the surgeon was very aggressive. I smiled and told her we would agree to disagree and left it at that.
Jun 19, 2019 08:13AM Help3 wrote:
Manuella that is so wonderful to hear! Did he do a lymph node transplant as well?
I wish you others as good news as Manuella.
Insurance is a bitch but after fighting a year and a half mine is approved and I'm trying to lose an additional 10 lbs before my surgery next month. I know a heavier bmi will make my chances of success lower. I gained 30lbs with chemo, radiation, 7 surgeries, tamoxifen and working on my master's.
I went from 137 to 169:-( I'm now doing WW and am down to 167 since Sunday. I hope to drop 10 by surgery next month.
Manuella you give me hope:-)
Jun 27, 2019 03:28AM melalymphatl wrote:
MLMom & HappyTrish - I have my testing and consultation appointment set with Dr Chen. The earliest appointment they had was Nov 11. So it will be a while. And surgery would be no sooner than Feb. I am hoping there will be an opening sooner. I am going to check back each month just to see. But if I don't have 3 weeks notice the air fare is double. Not excited about traveling to Iowa in the winter but I have faith all will work out. In the meantime my leg is doing OK for now and I am peddling my recumbent bike 5 miles each evening. I am trying to get into the best shape I can before the surgery. For nearly 2 years I haven't been able to do much more than walk when necessary. I'm hopeful I'll be able to keep up the peddling. Can either of you tell me about the SPY testing and InBody testing? Just like to know what to expect. Thanks for your help.
Jun 27, 2019 07:56AM HappyTrisha wrote:
melalymphatyl, please read this very carefully as there might be some tips in it that could help you out.
When I called to schedule with Dr. Chen's office, they told me that I would have to come first for the spy test, and then schedule for surgery. Somehow in communicating with Dr. Chen (email, phone call, don't remember exactly what), he told me that because I was coming from a distance, I could have the spy test done on a Monday and surgery the Friday of the same week! I'm sure he would do the same for you if you wanted to do it that way. The wild card was that I had no idea how long I would be in Iowa, it could have been anywhere from days to a month, based on what the spy test found. So I packed enough clothes to last me for a while. As it turned out, I was able to leave Iowa as early as the Tuesday following my surgery! So that is exactly what I did.
Delta airlines, if they fly from wherever you are, is the airlines you want to take. They are FANTASTIC when it comes to flying for medical purposes. They give a 10% discount on the cost of the flight, and they don't charge you for making changes. For example, I used an enddate three weeks out from the date of my surgery, just to cover myself. When I called to reschedule, there was no charge. You just need to let them know whenever you contact them that it is for medical purposes. They will ask you the name of the doctor, name of the hospital, etc. Now whether you intend to go there just the once, or you don't mind having your test and then flying back, it will be all the same using Delta. You can change at any time without penalty. If you have to change and you get an agent saying you can't do it without penalty (not that it will happen) you would just have to remind them that you were told that since it is for medical purposes, you'd be able to change if you needed to and would not be charged for it.
I don't know whether you know about Hope Lodge and if that's where you'll be staying, but Hope Lodge is a wonderful place right up the street from the hospital and they do not charge anything for you to stay there. In addition, there is a free shuttle service that picks you up there and brings you to the hospital and back. The only thing about Hope Lodge is that if you are having any kind of medical procedure, they require that you have a caregiver with you the whole time. That person would also be able to stay there at no cost. I've used Hope Lodge each time I've gone to Iowa - this time will be my 4th - and the last two times I've been able to stay at Hope Lodge and be without a caregiver because those times were just for my checkups and repeat testing to see if the surgery has worked. So those times I've gone by myself.
The only test I had was the spy test. Because mine was for the arm it will be different for you. I am assuming that they will shoot dye between the webs of your toes, both feet. They numb the area first so it isn't at all uncomfortable. You go back to where you are staying and then return 6 hours later. That's when they take pictures of what the spy test shows, and shortly after that, you meet with Dr. Chen. That is when he will explain to you the findings and let you know the surgery he recommends, based on those findings.
I hope this helps. I am very excited for you that you will be seeing Dr. Chen because in my opinion hands down he is the best.
Jun 27, 2019 10:33AM melalymphatl wrote:
HappyTrisha - Thanks so much for the info. Dr Chen had mentioned that he offers everything in one week for people coming long distance and especially people coming from other countries. But we decided that since I am coming from Atlanta and I want to try to get Humana to cover it that I would travel up there twice. My schedule is to do the SPY test and InBody test first thing in the morning and then have an education session with Mindy (his RN). He said I would also be able to meet other patients that have had the procedures done and get their take on it. He said I would see videos showing the actual procedures. Then at 3 I will go back for the SPY test and then meet with him at 3:15. So my plan is to fly up Sun even and return first thing (6 am) on Tue morning. They only have a few direct Delta flights there each day so that works best for me. The lady who scheduled me said they would put me on the waiting list for possible cancellations. I haven't called Delta to see if I booked now for Nov and then needed to move it if I would have to pay the current rate. Based on what I've checked online I need to book 3 weeks out to get the best rate. Anything less than that causes the rate to double. Which surgery did you have? He has talked to me about the bypass surgery, the liposuction, and the new lymph vessel transplant. I don't believe I need the liposuction. But I'm assuming I have blockages that would need to be bypasses. And I only had 2 lymph nodes removed and ended up with immediate lymphedema. He said that tells a story of it's own and that I probably was genetically predisposed to have it and probably already had it but it wasn't noticeable until I had the surgery. So I'm wondering if the vessel transplant would get the dozen or so nodes that are left back to working. He said it would require 3 or 5 days in the hospital. I can't remember which. The liposuction was one and the transplant was the other. The bypass surgery he said was out patient. I haven't scheduled the hotel yet. I saw the info on their website that they have a concierge that will book your room and that of your family members. I did see that they would cover the cost for the family members. I don't remember seeing that they cover the patient. I am going by myself for the testing and consultation. My daughter will go with me for the surgery.
Jun 27, 2019 10:47AM HappyTrisha wrote:
I had the bypass surgery. Hope Lodge is affiliated with the American Cancer Society. If you are going for the initial testing, you will be able to stay there without a caretaker. If you go for surgery, you need a caretaker. To stay there Mindy would have to send a request to them and they would approve it. So you have to know your dates. Patient and caretaker stay free. If you go to a hotel, well I know there are reduced rates but I don't know much else because I stayed at the Hope Lodge.
AGAIN - when you book with Delta for medical purposes there is no charge to change dates.