LVA surgery - bypass surgery - Have you done it?
Comments
-
I will have LVA surgery at the University of Iowa with Dr. Wei Chen in July. I had the Indocyanine Green Lymphography (spy) done and was diagnosed under the Campisi Staging at Stage 3. This stage surprised us as the swelling isn't extreme and I'm just a tear out of BC treatment. I had 14 nodes removed and had cording immediately after surgery. I had 33 radiation treatments after chemo. I wear compression sleeve/glove daily and use the the flexitouch pump many times a week. I will start using a night sleeve soon.
Please share any LVA recovery suggestions/ideas. I'm very excited about being proactive with this surgery- hope!
0 -
Help3 - you may have been put in the wrong compression level garments. Some of us are more sensitive to compression levels than others.For me, I can only use low level compression garments - any 'heavier' causes major swelling quickly - especially in my hand.
0 -
teach6 - wishing you all the best....you're in good hands with Dr. Chen, but be patient. That's the best advice I can give. Although I felt relief immediately (heaviness vanished), the bulk of the reduction in swelling took time. Over 3 years out, I don't wear my sleeve unless I fly and have been doing OK without wearing the glove from time to time. It did take several months and now years out of LVA I feel like it has even gotten better over time. Stay in touch and let everyone know how it goes for you!
Mary Jane
0 -
I had the LVA surgery in Oct 2014 by Dr. Peter Neligan at the University of WA. He is apparently some authority on the microsurgery (wrote a book about it), at least in this area. First of all, my insurance did not pay for the surgery...but the hospital/Dr. Neligan never sent me a bill. Make sure you get in writing that the surgery is covered prior to surgery. I was skeptical that the surgery would work because I felt I had a mild case of lymphedema in my left arm. Dr. Neligan said it could take a year to show improvement. It was 1-1/2 years before I noticed a difference in my Left arm - it was finally smaller than my right arm (I am right handed). Prior to surgery left arm was bigger than right arm. My swelling was mainly from elbow to upper arm. I wear compression sleeve and gauntlet almost every day. Unfortunately Dr. Neligan did not have enough interest in my case to follow up with me to know his surgery actually worked. On a downward note ever since I recently (Nov '16) had DIEP flap surgery due to reconstructed left breast implant ruptured, my lymphedema flared up again big time. I am still hopeful the swelling will subside over time. These things take time. I'd be happy to answer any questions about the surgery.
0 -
Hi Everyone! I figured I would post here even though this is for LVA rather than VLNT. But I don't see any updates on my notices for VLNT, so you are all stuck with me.
Here is my history - I developed RUE lymphedema shortly after my final radiation treatment in 2006... from a STEP class! My hand exploded! I was able to get my hand down and just wear compression on my arm and wrap nightly for almost 9 years. I had gotten my arm to a pretty good place - but was never able to wear compression that was too tight nor with silicone tops (too much back flow into my hand). In 2014, I had a breast MRI with contrast to check out an area of concern in my reconstructed breast... and wound up having an autoimmune reaction to the contrast. This caused my hand to swell up to a gigantic size. Not only was it swollen, but it was so incredibly painful that I could not move my fourth or fifth fingers. NOTE --- My IV was NOT on my lymphedema side.* Anyway, I was devastated. I had been fighting my insurance company for 4 years to put through approval for the VLNT. I had had consults with both Dr. Granzow in CA and Dr. Dayan in NYC. I had fought my insurance and gotten them to change part of the policy that stated that all breast cancer related treatment had to be by done by in-network doctors (this was the ONLY diagnosis with this stipulation and I fought it on grounds of discrimination and won). I was seriously suicidal... and I am not a depressed person. But I now know what it feels like to be so broken that you never want to get out of bed. Anyway - steroids helped bring down the initial pain from the reaction, but I was still left with a gigantic hand. I started my fight again and FINALLY, FINALLY got those b*stards to approve my surgery. I had VLNT from the left groin to my right forearm with Dr. Joseph Dayan in September of 2015. It was one of the more difficult surgeries I have had in terms of pain... I think just because of the cutting into an edematous arm brings its own host of difficulties. So... for the past 19 months I have had an extreme lesson in patience. My arm has always been like playing the lottery --- things that work for the normal lymphedema population don't necessarily work for me. Many respond to compression really well... my arm has to have light compression or it is a disaster. So, since my surgery - once past the acute stage and then the wrapping for 2 months, I have had to play with what works to help my arm. Dr. Dayan had said it could take up to two years to see the full results of the VLNT. I have had periods of being down and thinking it hasn't worked to periods of frustration, to periods of hopefulness. Well, I have to say, after all of this time, I am starting to see veins. And knuckles. My measurements are coming down overall. It is not that nothing makes them come back up - but overall they are down. I am able to go a day or two every now and then without a sleeve without my arm becoming a weighted giant disaster. I am making my appointments for August to go see Dr. Dayan again for follow up and testing. I can't wait for him to see my arm. I would do it all again in a heartbeat. It is not perfect. But it is soooo much better than it had been.
If any of you are thinking of doing this - go to multiple consults, ask questions and fight like hell to get it covered. BUT, find someone with experience. There was a local guy where I live that had just started doing them - I asked too many questions so he didn't want me as a patient - thank GOD. It was a huge blessing, because then my insurance could not dictate that I go to him. Dr. Dayan ended up being in network anyway. I have zero regrets... except that I could not manage to get it approved sooner.
0 -
I've been thinking about you and wondering how it's going, Nordy. Thanks for the report!
0 -
Hey Nordy, msjgumbas, et al! Though I haven't posted in quite a while, I never stopped on my journey to find some kind of surgery for my LE. Well strangely enough, I will be meeting with Dr. David Chang at the U. of Chicago on June 5th. He had shut me down several years ago because the results of my lymphocintigraphy indicated that I didn't have LE. I was quite angry about it because it is without question that I have LE. So I continued to search and read and research and ended up meeting with Dr. Mark Smith at Mount Sinai Beth Israel Hospital in New York last summer and had lymphocintigraphy repeated. Their test was a lot more intricate than the one I had done in RI. This was a two-day test and included legs and arms, though me LE is confined to my right arm. Lo and behold, LE was indicated (eye roll). I wanted to stay with Dr. Smith based on his reputation and was going to set up an appointment for the spy test, but it so happened that he was switching hospitals the week after my appointment and wasn't going to be set up to see patients until some time in the fall. In addition, he was moving to Long Island, I believe, and that was nowhere near as accessible for me as NYC, since I like taking the train. Anyhoo, that once again sent me on my journey. So I continued to search and read and research and came full circle to Dr. Chang's name. I emailed their office and they sent me a questionnaire to fill out, plus they wanted pictures. They said Dr. Chang would evaluate what I sent back and if he felt I was a suitable candidate, I'd hear from them. Well they called within 48 hours to set up an appointment, so it's a go. I asked if it was possible for me to have the appointment and surgery in the same period of time but they said no. I guess he's booked for surgery for several months and so I would have to wait. (I want the LVA, by the way. I do NOT want the node transfer. I hope Dr. Chang agrees...)
I found that there were doctors now performing the surgery in Boston. I almost considered making an appointment. I mean, how convenient would that be! But for something like this, I want it done by a seasoned professional in the field. So Chicago it will be!
I will now start reading this thread where I left off. I did continue to read but at some point decided to spend all my time searching and reading and researching, ha ha.
Best to all
Trisha
0 -
Dr. Dayan is the best. My spy studies presurgically showed complete blockage of the my right arm. There was nothing...
I never went back for my one year post op as my husband was transitioning jobs twice last year, insurance was a mess, and money was tight. I am headed there in August and look forward to seeing how things are. As for the inflammatory response.... absolutely. I just had to be on steroids for a procedure that I had and it totally benefited my arm. Too bad there are too many side effects to steroids! i would want to be on them all the time. But that leads me to think I should be doing my best to be on an anti inflammatory diet. Happy Trishia - good luck to you! I don't check in here often, but I will try to check back in a couple months to see what you end up doing.
0 -
I am at almost nine months post op from my VLNT. I am finally starting to see a little improvement in my arm. That makes me hopeful that maybe someday I will be able to go without the sleeve for a few hours. My definition of success before the surgery was being able to go without it for four hours. I can go about one right now before my arm starts hurting. Baby steps, right?
A few other things being looked at for the inflammation are two medications. One is available here, but is another one that isn't good for long term use. The study is pending publication. The other is used in Japan but hasn't be cleared by the FDA here. It is in clinical trials.0 -
bumping up thread so people can post their experiences here. Doesn't matter which kind of le node surgery you had. Just please post. We gather Info here for future use. Thank
0 -
Hey all! Well I met with Dr. David Chang in Chicago on Monday. I had a 5:55 a.m. flight so was up at 3:15 to drive to the airport. I took public transportation from the airport to the hospital, so by the time I met with Dr. Chang (10:30 a.m.), I was pretty lifeless. It bothered me only because I am a total Type A person and like to be entirely engaged in anything I do. I also may have given Dr. Chang the impression he was dealing with a zombie.
) Anyway, I went through the drill of meeting with his resident first. He seemed quite nice but I had to tell him twice that I had already answered a question that he asked! I was alert enough for that ha ha. Dr. Chang had two other doctors with him, one from Belgium and one from Norway. I guess they were there to observe him. I like that they did give me the option of meeting with Dr. Chang only, but I was so tired that they could have trooped in the entire medical team plus everyone in the waiting room and it would have been fine with me.A note of interest/fact here. I am a horrible patient in that I want immediate gratification and I'm not willing to put myself out too much. What that means is that I stopped going to LE therapy years ago because I got sick of it and my compression sleeve's only interaction is with my bras because it's kept in the same drawer. My LE isn't the worst I've ever seen but it's definitely there and cosmetically it's bothersome. (I will post the picture I sent that shows the difference in my two arms, if I can find it. It's my right arm, and I'm right-handed. I took the picture after I had been working on the computer for a while. That's when my arm really swells.)
My preference was to have just LVA. That's what I was hoping for. But Dr. Chang said that despite the fact that my arm is really soft, I've had LE so long (about 12 years) that LVA alone likely wouldn't be successful. His recommendation was that I have both LVA and node transfer from my neck. Wah. However, the guy is a master in his field. I went all the way to Chicago because I wanted to go to the best (certainly one of the best). So if that's what he's recommending, that's what I'll do. I did ask him about transfer-site LE and he said he had heard of one case of it happening but he's done over 200 transfers and has never had it happen. My understanding (misunderstanding?) is that transfer-site is more likely to happen with deeper surgery where there are fewer nodes. I guess the neck has a plentiful supply.
I flew home the same day - 11:30 at night to be exact - so I had plenty of time to sightsee in Chicago. This was the highlight of my day!
That's all the news that's fit to print. No idea how long I'll have to wait to find out if insurance covers it. I'm hoping that my zombie-like state, coupled with my honesty (I'm a terrible patient, no I don't bother with my compression sleeve, I haven't had LE therapy for years because I don't feel like going) didn't dissuade him or make him feel like it's not important enough for him to deal with when there are patients who are really vigilant, do everything they can, and would crawl on their hands and knees to have the surgery. My wanting it done should be reason enough, but I'm not sure how all of that hit him.
So I'm hoping that he presents a good-enough case to insurance. Truth is that I didn't really give them a lot to go with. ( Who knew. None of that was apparent to me when I was answering questions. Only later, when I finally woke up, did I think about it.Will keep you posted. Please say a prayer or two. I may not be the world's best patient, but I deserve to have it done as much as anyone else does.
Hopeful Trisha
0 -
happy Trisha Thx ever so much for your report. You are breaking ground for us and we love you dearly for it. I doubt I will ever see this surgery in Canada but for the rest of you I pray you all have success with it. Keep us posted. That's how we learn new things.
0 -
Happy Tricia, sounds like a really long day! I wish you the best. Dr Chang was my first choice, but my insurance insisted that I go to someone closer to me, so I had to go with what would be covered. Let us know when you have a surgery date.
0 -
Hugz, I am so hoping you are wrong about seeing the surgery in Canada. Forgive my ignorance, but what kind of medical insurance do you have in Canada? Is it possible that your insurance would be accepted in the US? If not, you could always try to offer yourself as a guinea pig! I've thought of doing that at times. I don't know how far you would get, but with the right doctor, maybe pleading your case and begging might help? If your insurance were accepted here in the US, would you be willing to travel here to get it done? When I was researching microsurgery for LE, I came across a doctor who seemed to be an absolute angel, extremely compassionate. Also very competent. I emailed him questions and I know I asked about insurance. His answers made me feel like he was someone who would take someone off the street and help if he could. I can't remember his name right now but I'm sure I could find it if I sift through my emails. (I've been at this for years and I've emailed many doctors, ha ha.)
When we were growing up, one of my mom's favorite sayings was "Where there's a will, there's a way." Unfortunately for the world at large, that one has stuck with me like glue!
0 -
SusanRachel. I don't know how long it takes to get some kind of answer. How long did it take you? His office said that they would let me know as soon as they hear something. I'm afraid to be hopeful because I don't want to be let down.
One of the things Dr. Chang told me to do was to get back into PT. I went yesterday for a consult and am starting today. The therapist said she is going to use both manual massage and the pump on my arm. The therapy is a course of six weeks and I go twice a week. She took measurements and there was only an 8% difference in my two arms, most of it in the forearm. However that was at 9 in the morning. She will get to see my arm now, after I have been typing at the computer. Big difference!
Keeping my fingers crossed that insurance says yes. Will update as soon as I hear anything.
0 -
Trisha, It is mandated by law that it be covered. LE is a SE of breast cancer treatment and all treatment for breast cancer recovery must be covered. At least that is what Dr M's office told me. If insurance says they won't cover it, all your doc has to do is remind them of the law and it will be covered. I had approval in a matter of days. I saw Dr. M for the first time in early July and had the surgery in late August, only because that was when I could fit it in. I could have had it sooner, but, life.
0 -
Update - well I now have an LE pump at home. How times (and pumps) have changed. The LE therapist used the pump on my arm and then asked if I wanted one at home! I remember when they were large and bulky, a mass of wires and tubes. She said that insurance would cover it. I asked if it was the same pump she was using and she said it was. Small and compact, easy to store. So I said sure. Within two days the pump was at my house. So I've added that to my arsenal.
Anyway, I decided to call Dr. Chang's office to see what was happening with insurance. They told me that they typically had answers within 7 to 10 days and would have one of the nurses call me back. That was last week. I received an email yesterday from one of his nurses telling me that she thought that my surgery was a go but that the scheduler was out of the office this week and would contact me next week with "any updates". So I am cautiously optimistic but won't be totally optimistic until I hear from the scheduler. Of course if it's yes, I'm going for it. Fingers crossed!
Trisha
0 -
Yay! Can't wait to hear how things go for you.
0 -
My LVA surgery was cancelled by insurance -Blue Cross - because it was deemed experimental. Any suggestions? What coding have others used to get it paid? So frustrated..
0 -
Teach, you could have the financial people at your doc's office contact the financial people at Dr Mithani's office (Duke Orthopedics). He has had very good luck with insurance companies because there is a law in place that they must cover all post mastectomy care including surgeries. Sometimes they initially tell him no, but using that law, he gets approval. His people could better tell you how they are doing it.
0 -
Thanks! I'll call tomorrow and try to get this scheduled again...
0 -
So here is the latest. My insurance will pay for LNT but will NOT pay for LVA. For an extra $5000 out of pocket, I can add in LVA. Not really having that kind of "pin money" (ha ha) I am going to opt for the LNT. I have to believe it's going to give me some result and I will be better off than if I had not had it at all. So now I have to wrap my head around the whole thing and start putting the pieces in place. I am looking at September at the earliest.
Will report more when there is more to report.
(Question - would you all make the same decision in my place - to have the LNT? Just curious. I'm a little disappointed that I'm not having both but before they came up with LVA, patients were successfully having LNT.)
Trisha
0 -
Trisha,
Please forgive me for saying below.
When I was DXd 7mos ago, my first fear was the cost. My hubby told me to tell hospital bill collectors "I will pay when and what I could". I wound up making 25 month int free payment arrangement on about $6,000.00. The hosp sorta had a bank which deals w patient accounts, I have a bill collector who agreed to get $25 per month from me on another $1000.00
A couple of things I did when I panicked about cost were decreasing 401k contribution accordingly and getting 15 month interest free credit card,
If LVA is truly important to increase my QOL, I would and should find a way to come up w money.
P.S, I have lymphedema which is under control due to compression sleeves and FLEXITOUCH PUMP machine.
Mimi
0 -
Mimi, I totally respect what you are saying, believe me. If my LE were really bad, I do believe that I would finance the $5000. But I am somewhere between a stage 1 and a stage 2. I've had LE for at least 10 years, and that's the reason the doctor couldn't recommend LVA alone. (Now I'm happy that he couldn't!) So I guess I'm willing to take my chances with LNT. They're taking the nodes from right above my clavicle and that makes me more comfortable than if they were taking them from my groin or under the other arm.
0 -
Bumping up. Girls can you report on your success? Your our pioneers in this fairly new treatment. Thx for being guinea pigs. We love you for that
0 -
Thanks for bumping this, Hugs. Yes Trisha and Teach, what is the plan? Let me know when you are getting surgerized so I can give you all the tips I wish someone had given me before my VLNT.
I am doing well. Unexpectedly, I can now go 3 and sometimes 4 hours without a compression garment. That makes me really happy. I am hoping to stretch it out to 4-6 hours. My goal before the VLNT (late Aug 2016) was 4-6 hours with a hope that I could go to church, go out for lunch afterward, and stop at the grocery store for a couple of items on the way home without my sleeve. I don't really care about wearing it at home or at night. What I mind is the constant, "What's wrong with your arm?" It makes me want to shake them until their teeth rattle.
0 -
Hey SusanRachel and all! One of my favorite sayings is: life is what happens while you're busy making other plans.
I am still "all systems go" with respect to having the surgery. My only question is when. I come from a large family (5 brothers and sisters) and so life is replete with birthdays, graduations, baptisms, weddings, etc. Then I'm in charge of an event at my church that is happening in November. I need to be functional and so didn't want to take a chance that I couldn't use my arm. After that is Thanksgiving, a holiday that I host every year. And right after that, it's let's get ready for Christmas! I'm the cookie baker in the family so once again, no question about needing both arms working. I'm thinking that right after the first of the year is my best bet. I am only hoping that I don't plan a date when there's a blizzard! So that's where things are at. Let me tell you something that is aggravating though. In Iowa, where mjsgumbas went, both LVS and VLNT are covered by insurance. In Chicago, where I am going, only VLNT is covered. Does that make any sense at all???I don't believe I mentioned this last time but just another one of life's little aggravations. When I went for my annual exam in May, the doctor told me that they had been watching something "for a while" but now they are convinced that I need to be on thyroid medication. So I have an underfunctioning thyroid. My exhaustion, that I had chalked up to staying up too late at night, was a result of my thyroid condition. I also noticed an increase in my appetite. And I am someone who spent at least 5 days a week at the gym. The last time I had enough energy to go was mid July. So I am really off kilter. I couldn't get an appointment with an endocrinologist until the end of August. She told me that she didn't feel my numbers were that far off and asked if I really wanted to be on medication! In this case, yes, please. And this is one of the top-rated endos in my state! I had done research on it in the meantime and see that there are two schools of thought on thyroid numbers. More conventional/conservative doctors look at the numbers differently. The more modern school of thought, it seems, definitely consider my numbers to be problematic. Obviously so did the blood labs since they have been shown as outliers the last 3 readings! And my exhaustion and appetite are not figments of my imagination. So I am in a quandary. The doctor put me on a low dose of thyroid medication and will double it every six weeks and keep checking my numbers. However at this rate, I will soon be starring in "My 600 lb. Life"! I am considering going to a naturopath for a second opinion.
Other than that, life is quiet, ha ha! And I will be eternally grateful SusanRachel, to get any tips at all to make this a smoother ride. Will update as soon as I schedule my appointment.
0 -
I have had the full work-up for bypass surgery at Moffitt Cancer Center, but am declining it for the moment. I was diagnosed with bi-lateral lymphedema in 2011 and have had ups and downs with control over the course of time. As part of the recent workup (which included measurements, L-DEX, and all day lymphoscintigraphy), I did re-enter PT and have experienced very good control lately with renewed MLD, some weight loss back to my pre-diagnosis norm, and following an anti-inflammatory diet. I had my third consult with the surgeon on Wednesday and advised him that I will revisit in 6 months. I am getting a night sleeve in addition to day garments, and a pump, which I tried out for the first time last week and liked. I have had a lot of surgery since diagnosis, 17 and counting. If the results were more guaranteed I would consider it, and I don't think I am a good candidate for node transfer because I have very few nodes and don't want to transfer the problem to another body part. My last (hopefully) reconstructive surgery was last November and since then I have had a full urology workup (scans, tests, an in-office procedure, and consults) for repeated UTIs, and three vascular procedures so far on my legs, with more to follow, and a colonoscopy. I am tired of appointments and surgery/procedures, so I am going to take a break and see how I do with stepping up my other methods of LE control. I am interested in following this thread, and definitely interested in knowing the lessons learned from those who have gone ahead with surgery.
0 -
Trisha, thanks for the update! I had nodes transferred from my groin to my axilla. By far, the donor site was more problematic postop than the axilla. I had no issues with using my arm after the surgery. Whether that is the same for you would depend on where they intend to put the nodes as well as how you heal. On the other hand, I had a drain in my groin for a month. That caused way more problems, including not being able to wear the clothing required for going to work until it was out.
In any case, it is wise to plan it when you don't have a major event right afterward. I had an event six weeks after the surgery and that was as close as I would have wanted to cut it.
0 -
Thanks for your thoughts. Has anyone out there got lymphedema in their donor site. We don't hear much about that and I think it frightens most of us thinking that we may get le elsewhere if we try this. After all one lost node can tip the scale. Your all so brave.
0
