LVA surgery - bypass surgery - Have you done it?
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I really appreciate your insight. I will understand if you don't want to answer personal questions but I have a couple more questions. How long ago did you have the surgery? How much improvement have you had? Dr Chen says if it's done early enough it can be cured. I'm already nearly 2 years since my cancer surgery so I am concerned.
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I had my surgery one year ago in July. I've had incredible improvement - and I had had lymphedema at least 13 YEARS. I basically don't even wear my sleeve anymore. So I wouldn't worry too much.
By the way, I didn't consider those personal questions. But if you ever have really person questions for anyone, such as how much do you weigh, that is when you would use private messaging. I wouldn't answer that question in private messaging either, but just sayin'.
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the length of time with lymphedema is not necessarily the best indicator of the chance of a successful LVA. What matters most is your lymphedema stage. Some stay in the early stage for many many years, while others evolve much quicker. You need to have the testing done to stage your lymphedema, that’s how you’ll know. In the meantime, my understanding is: if your swelling is mainly fluid, so if with elevation, massage and compression your limb goes back close to normal, it’s all fluid and likely early stage. If not, possibility of intermediate or late stage. Mine isintermediate at this point (4years), so LVA isn’t not the best option. I am scheduled for Lymph Vessel transfer with Dr Chen in august.
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MLmom - Thanks for the insight and I will keep you in my thoughts and prayers for your August surgery. My leg goes down to almost it's normal size overnight.
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MLMom - When in August is your surgery? Do you know yet how long you'll be in the hospital? Do you know what the follow up plan is?
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my surgery is Aug 13th with pre-op testing on the 12th to make sure that my legs are in no way compromised before harvesting lymph vessels from my ground... fingers crossed!
I will be in the hospital for 3-5 days mainly to make sure that blood flow is good in the flap area. It needs to be checked every hour!
K will then have a follow up after 2 weeks and stitches removed at 4 weeks. 3 weeks of arm elevation 24/7, then elevation « as much as possible » for another 3 weeks
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hi guys! So I had my lymphovenous bypass and lymph node transplant 2 days ago with Dr Chang in Chicago. They took the nodes supraclavicular on the right so I have a drain there and put the nodes in my left axilla I have a drain there as well. They were only able to do one bypass right at my wrist. Transplant went well. I'm hoping I get good results from the transplant. He said the upper surface of my arm had good lymph flow so nothing to bypass but the underneath part of my arm was too damaged to get any. Thanks to my insurance for delaying my surgery through denials for 2 years. All I can do now is pray.
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MLmom - Hopefully your legs are good. So I'm guessing he didn't test them when you were there for the testing on your arm. Keeping your arm elevated for 3 weeks could be a challenge. Is it your right or left? Will you be able to drive. So you will have to travel back in about a week (since you will be in the hospital for nearly a week) and then again 2 weeks later. Are you close enough to drive? Or do you have to fly?
I only had 2 lymph nodes removed (the sentinel nodes) during my cancer surgery. So I think he is concerned that I am predisposed to get lymphedema. I think he is hoping (and I am too) that the bypass will work for me. I've read that it works immediately but sometimes stops working after 2 years which is why some surgeons do the lymph node transfer at the same time so it starts working when the bypass stops. Dr Chen is the only surgeon that I've heard about who does the lymph vessel transfer. I still have at least a dozen lymph nodes in my groin area. Maybe he could just reconnect some of them. I think my cancer surgeon cut all of them while removing the 2.
It sounds like you won't get much sleep while in the hospital if they have to check you every hour.
Will you have quarterly follow up visits after the initial month?
Is your insurance covering either or both procedures?
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Help3 - How are you feeling now that it's been about a week since your surgeries? Are you still in the hospital? Can you tell a difference yet?
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Hi all! Hope all is well with everyone. Just as a point of information for anyone interested in having surgery for LE, I think I am correct in stating that Dr. Chen no longer performs lymph node transfers. He doesn't believe in them because he thinks there is too much risk of causing lymphedema in the are of the transfer. I think that's why he started using the lymph vessel transfer. It doesn't mean that it will definitely happen, just that he didn't believe in taking that risk and therefore came up with new ways of accomplishing the same thing.
I've totally stopped wearing my compression sleeve and have no swelling. I missed my appointment in July but am going back in September. I know Dr. Chen will be really pleased at my progress. I thank God - and mjsgumbas - for guiding me there. I will say over and over again, the man is a genius and a caring one! Thank you Dr. Chen for your passion AND your compassion!!
Trisha
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Hi Melalymphatl, I live in Florida and have 2 teenagers, so we figured that it would be easier for me to stay in Iowa through the first 4 weeks as to not have to fly back and forth (and with my restrictions, my husband would have to fly back and forth with me wish would be costly and a lot of stress on everyone). My mother being retired and healthy will spend most of the time in Iowa with me. I'm right handed and my sirgery will be on the right side (of course). I think I could drive a little if it was on my left... but I'll have to wait and see. It will be a difficult situation, but really want to do it right... it might be my only change at improving my lymphedema...
I don't know yet if my insurance will cover or not, but we figured that we can cut back on other stuff to pay for this if needed...
I believe i'll have checkups every 3 months, then every 6... lots of Iowa for this Florida girl! LOL
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HappyTrishia - what surgery did he perform on you? I agree, he is a genius
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I had the LVA. After the testing that's the one he had decided was best for me. I went to Iowa not knowing how long I'd be there so I packed enough for a month!
Will you be staying at the Hope Lodge?
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HappyTrish - I'm hoping so. Unless someone with greater needs comes around... Have you stayed there? if so, it is very clean?
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It is immaculate! Everything is sanitized and germ free. You will absolutely love it. They house you, feed you (there is a community kitchen and they always have the refrigerator and cupboards well stocked.) They also provide you with your own personal refrigerator and cupboard space in case you go shopping or want to bring some of your own food. They have a library stocked with books and DVDs and there's a DVD player in every room. There are lounges on every floor where they have large-screened television, plus puzzles to work on. There's a small exercise room in case someone wants to work out. When the students are back in school, they have student volunteers that come and cook special meals for everyone there. When I was there in October, they had some special meal and then pumpkin painting. (You get to take the pumpkins home with you.) Oh yeah, and there's a laundry room and they provide the detergent and softener so you don't have to bring any. Also a welcome packet of toiletries in your room when you get there.
And all that free. What an absolutely amazing gift that is to people needing treatment or surgery. And the shuttle comes and takes you to the hospital and back - the hospital is right down the street from the Hope Lodge.
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happytrishia, thank you so much. I'm not a germaphobe, but I like things clean.. LOL
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hi guys! I'm a week out now from my lymph node transplant from right supraclavicular to left axilla and also one tiny lymphovenous bypass on my left wrist. He said that he doesn't expect results until a year or so since the lack of needed bypasses on the upper surface of the arm and the lack of bypasses viable on the bottom surface of my arm. I always see results from wrapping so I think it looks better right now just because I'm wrapping 23 hours a day. Normally I don't wrap or wear a sleeve because the sleeve makes my hand worse even with a glove. My routine prior to surgery was pump one hour per day and wear a night garment. I probably will continue nightly wrapping even after my month of wrapping is over and just pray for those lymph nodes to kick in. I was pretty unhappy that I could not get more bypasses but damage had been done from waiting. In retrospect I would have paid out of pocket instead of waiting on insurance to agree to pay after a long fight.
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that place sounds amazing!
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I am so hoping that everything works out for you. I really wish you could have had your surgery with Dr. Chen. I was at least 13 years with LE and he performed miracles on me. I don't know where you live but if it doesn't appear that your situation is improving and you want to go for a consult, I'd highly recommend Dr. Chen. Again, I'm hoping for your sake it doesn't come to that, but I'm telling you that his procedures are beyond state of the art. For instance, if there is too much damage Dr. Chen now performs something where he takes a flap with vessels from one arm and transfers it to the other arm. So there is no question that it's going to work. He doesn't deal with lymph nodes at all.
Prayers and luck that it all works out for you! (But if you do ever find yourself going to Iowa, at least you know you'll have a place to stay for free!)
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MLmom - I hope your insurance covers the procedures. When Mindy sent me the info it included the self pay price for the bypass but not for the lymph vessel transplant so I asked for it. I got a call yesterday afternoon from the hospital's finance dept. She said it was $167,532.56. That being said Mindy had told me that they have not had that procedure denied by insurance, it's the bypass that has issues getting approved. But the info she sent me said you had to pay up front for the procedures if insurance hadn't approved. I can't pay for the transplant up front out of pocket. I'm prepared to pay for the bypass if I have to but Dr Chen says he has had success with Humana (my insurance co). So I'm hoping I won't have to. You are scheduled in 2 weeks so I'm assuming they are not requiring you to pay up front.
I understand why you would choose to stay instead of traveling back and forth. My husband and I own and operate our own business so any time I am not here is a challenge. So I will need to travel back and forth.
HappyTrisha makes Hope House sound awesome. I am going to ask Mindy to try to set that up when I come for surgery. I will just stay at one of the hotels when I go for the testing.
HappyTrisha - I know you said that Delta was accommodating with you on your schedule changes but I had a conversation with them yesterday and they told me that they offer discounted airfare for the Mayo Clinic but they do not allow fee free changes because my situation does not qualify as a medical emergency. She suggested I book a refundable ticket. The refundable ticket price is more than double the non refundable price. So that would be stupid to do. I could just buy 2 tickets and come out cheaper. So you must have gotten lucky and got the right Delta rep on the phone when you needed to change yours. I was going to go ahead and book my November dates but wanted to make sure I could change them to an earlier date if an opening came up. Now I guess I'll wait. I am really hoping I can get in sooner than November. In your travels up there have you had any issues with winter weather? I'm a little concerned about traveling there in Nov and Feb (assuming surgery is 3 mon later). I didn't know if you know if they keep the roads pretty clear. We have very little snow in Atlanta and I avoid driving when we do. I can operate out of my home office and let my employees stay home. So it's been nearly 35 years since I had to drive in snow frequently.
Help3 - I am also hoping you will see improvement. A year is quite a while to wait to see if it worked. In the meantime more damage could happen. The insurance fight is very frustrating. Dr Chen is trying very hard to push for regulations that make them cover this since the procedure that caused it was covered. He's also trying to educate surgeons to recognize the signs and react to the lymphedema faster. He feels so strongly about helping people that he has gotten the self pay options down substantially less than any other facility. I feel very lucky to have found him.
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Melalymphatl - I too had good luck with delta. My flights are just a slight bit more to be refundable so I went with that option. I can change the travel dates without changing fees, but would have to pay the difference if the new ticket was worth more.
As far as lodging, they typically save the rooms for pt's going through active cancer treatment. I'm "tentative" there so if someone else who qualifies more comes along I will no longer have my spot there... wish is fine, even if I just spend one night there, its that much less in expenses (you have to have a caregiver with you for hopelodge, they don't offer any assistance) There are a few nice hotels in the area who have a hospital rate. If I remember a Mariott residence for $80/night and you have a small kitchen.
167K is also too much money for us. When they quoted us for LVA we asked about VLVT and they said it was similar (under 20K in my situation). My guess is that 167K is the cost billed to insurance but for direct pt pay it is significantly less, but I will check on that to make sure that I don't get stuck with that kind of bill. They did tell me that VLVT was usually paid and my insurance (Blue Cross) tend to cover pretty well... Dr Chen is afraid that this type of surgery will soon not be performed because of the issue with insurance. It would be a shame for sure!
I'm lucky to have a business that I can do most online, at least for the short term.
Good luck with the process, you can certainly use Uber to get from airport to Hospital/hotel. Hope Lodge provides a shuttle and they said they would be happy to help with transportation from hotel to hospital should I end up not having a room at the Lodge. So driving in the winter might not be necessary for you...
Good luck!
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MLmom - They gave me the CPT Code for the lymph vessel transplant. It is 15757. Humana said they will pay for it after my co-pay. But they said it had to be preauthorized. And they denied the bypass earlier this year when Emory in Atlanta submitted it. Dr Chen says he has gotten them to cover it but no guarantees. Mindy said they haven't had issues getting the transplant covered so far. So hopefully Blue Cross will cover it as well.
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melalymphatl - what would I do without this forum? First, that how I learned about LVA/VLVT, but now it just really saved me again!
After your post melalymphatl, I contacted Dr Chen billing office. They said like you, 167K if no insurance coverage and that my insurance will not approve or deny prior to surgery, but once surgery is completed and will cover IF they find it medically necessary!!! SAY WHAT???? so I called my insurance who said "No way, your dr needs to submit and will approve/denied before surgery". So, back with Chen's billing person... They called insurance again to find out that they talked with an IDIOT the first time around and that YES they needed to submit it and it will be approved/denied prior to surgery.
Without you ladies, I would have probably walked in here clueless on surgery day, no approval or nothing and be stuck with a 167K bill!!!!
So, thank you, thank you, thank you! Still waiting to hear, so fingers crossed...
Oh and they gave me 3 CPT for VLVT: 15757, 15220 and 15221...?
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MLmom - I'm so glad you made that call. Mindy told me yesterday they "always" submit for preauthorization when I sent her an e-mail saying my insurance will cover the transplant with preauthorization. So apparently they don't always do that. They should be able to get it authorized prior to your surgery date. Humana guarantees a 10 day turnaround. But I got my denial for the bypass that Emory submitted in about 8 days and there was a holiday in the middle of it. But if they deny the bypass you won't have time to appeal it. So you still might end up with a $24,000 bill if you keep your scheduled date. I assumed that was the reason the surgery is scheduled 3 months after the testing so they have time to deal with the insurance mess. I know Dr Chen feels very strongly about forcing the insurance companies to cover it. Apparently he has mastered the coding in order to get it covered. But the bypass is still a process to get approved. He said it is normally denied and then he has to appeal and prove it is medically necessary. Tony in their finance dept only gave me CPT 15757. Maybe the other 2 are for the bypass. She and I were only talking about the transplant surgery. I will keep my fingers crossed for a speedy response from Blue Cross for you.
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MLmom - Does Blue Cross have an online portal? Humana does. So when my preauthorization was submitted by Emory I could see that it had been submitted and was in process. And then I could see when it was denied. Emory originally just called Humana to verify coverage and were told that it was an exclusion in my plan and would not be covered. So they were ready to just quit then. Fortunately for me I am very vocal and don't take no for an answer very well. So Humana assigned me a case manager. She has been awesome. She called Emory and explained to them that they had to submit for preauthorization anyway and it might still be denied and then they would have to start the appeals process. Humana has several steps in that process. The last one gets you out of Humana and it is submitted to a panel of doctors who specialize in your condition. I am certain I will have to go thru to the last step to get the bypass covered. I didn't get past the 1st appeal with Emory. The surgeon lost interest and did a terrible job with the first appeal. She has plenty of work doing breast reconstruction. So I moved on to find someone who wanted to help me. That being said, can you get a case manager assigned to you? I am our plan administrator so it gets me in touch with the right people. I contacted my agent, who contacted Humana, and they had this lady call me. She's the one who did the leg work this week to verify that the transplant would be covered if preauthorized. She also helped get me thru to the right dept to handle the Mayo Clinic's ridiculous $436 bill for the consultation with their micro surgeon. If you can get a case manager, they might be able to push your stuff thru expedited since your surgery is already scheduled and coming up very soon.
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melalymphatyl, I agree with MLmom. The difference in fare shouldn't be that much. When you call back to schedule, insist on talking to a supervisor. I am surprised that the fare from Atlanta is so expensive because it's a direct flight! I have to go from RI through either Atlanta or Detroit (I've done both depending upon the schedule) and I get really reasonable fares. If you are going for medical purposes you automatically get a 10% discount, but you have to go with the main cabin fare or above. So when you look at the difference in fare between economy and main cabin, with the 10% discount it should be pretty negligible. Of course, there are different fares based on the time of day that you travel. I always look for the lowest fare! And now that I just go for the spy test and checkups, I automatically fly economy. The bonus is that when you fly main cabin, you can check a bag free. Not so with economy. But when I go for checkups, it's only a cup of coffee trip and so a carry on is sufficient.
About the snow - Iowa is very used to it and so well prepared. I had to laugh because I can imagine that being from Atlanta you would be wary of driving in the snow. Being from New England, snow and us are like peas in a pod!
About travel from the airport and back. The airport has its own shuttle service. It costs $38 one way to Hope Lodge (or other hotels in Iowa City) and there is a discount if you have more than one in your party. I believe the taxi service is something like $75. I always call in advance and they are waiting for you when you flight arrives or when you go back to the airport to depart.
If Hope Lodge doesn't have availability, they will find you a nearby hotel at the discount rate. I believe it was going to be $45 per night at one of the local hotels. But I've never run into a problem with availability.
About paying in advance, I was not required to do that. I was required to promise that I would pay for the surgery ($5,000) if insurance didn't cover it and they promised they would set up some kind of payment plan for me. Thankfully - and as they told me was typically the case - insurance covered it.
They are absolutely wonderful at the University of Iowa Hospital and talk about state of the art! They are very compassionate and run like a well-oiled machine. I promise that you both will be pleased beyond belief with every facet of it, especially dealing with probably the best LE surgeon in the country!
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HappyTrisha - I normally fly first class and the difference between refundable and non refundable was more than double. So I checked main cabin. It was also more than double from non refundable to refundable. And the ticket price for main cabin vs first class is about $60. Of course, the plane is tiny. So I don't know what first class really is. I flew a similar plane from Atlanta to Newport News, VA and the stewardess sat up front and just talked to you about what you wanted and she could talk all the way to the back of the little jet. I selected the least expensive flight. Leaving here on Sun afternoon and leaving there at 6 am on Tue to return for my testing. And the paperwork Mindy sent me regarding self pay says $18,000 for up to 4 hours and $1600+ for each additional hour which came out to about $24,000 for the bypass surgery. And it says right on it that you have to pay it before the surgery. Maybe they do that to make sure they are dealing with people who are serious about getting better.
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Help3 - Just wanted to check in and see how you are doing.
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I haven't met Dr Chen yet but I already love him. I have had random intense pain where my lymph nodes were removed nearly 2 years ago. I have asked every doctor I've seen why I have this pain. No one has an answer. Not even guess. My little dog stepped on that spot last night and caused pain and it reminded me it's still there. So I sent an e-mail to Dr Chen this morning. Less than a minute later he called my cell phone. He said it was likely neuroma and explained what that was and how to test for it. He went on to say that surgery could be done to repair it but in most cases it improves over time and asked if it had improved or was the same as it was after the surgery. I told him it was less frequent now. So he said it will likely resolve itself but if it hasn't when I see him I should remind him of this conversation and he'll look at it. In a nutshell it is nerve damage caused by the surgery.
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melalymphatl- dr Chen truly is one of a kind. I had the pleasure to talk to him in the phone as well even before I was a patient of his!
My I Duranceau company approved my Vessel transfer surgery for Aug 13th!!! They had given Dr Chen’s office the wrong info when they contacted them... error that could have cost me $167k! But all is good now and I’m keeping my fingers crossed for the test they need to do on my legs before surgery to make sure that there are good vessels to harvest and good lymphatic system in the legs (donor site)...
Can’t wait to update you all on my results!
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