LVA surgery - bypass surgery - Have you done it?
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Hugs, I did note an increase in my hip size after the surgery, but nothing that bothers me, though it did cause me to need a lot of new pants/skirts. They were very careful not to remove any nodes that drain my leg (blue dye in my foot, see what turns blue and don't remove it, then green dye in my belly and remove only nodes that were green but not blue - or something like that).
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You'd think that they could use stem cells and create lymph nodes? I lost 29 nodes, so now after months of therapy, with not any great relief, I'm thinking about talking to a surgeon about this surgery. My therapist suggested it. I shared my concern about developing LE somewhere else and she said it depends on the doctor. So I guess it's worth a consult at least
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SusanRachel. Was the increase size in hip due to swelling or just weight gain? Sounds like all your nodes are functioning. Thx for educating us. Knowledge is POWER
Homemom. Awe I'm sorry your not fair my well. I'm surprised your therapist liked the surgery as most therapists say it's to early to note true success and don't forget it may put them out of business if it truly is a cure! Yes to stem cells .....anything. P l e a s e!
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Home, I will find out at the NLN conference if they are working on growing lymph nodes. I suspect yes. It would be a game changer to be able to grow an indefinite number of new nodes and implant them everywhere they are needed. No idea when it might be ready for prime time though.
Hugs, it wasn't weight gain. I weigh the same as I did before the surgery. I think removing the nodes from my groin didn't really cause lymphedema, but definite delayed drainage there. It was still worth the effort. If they do figure out how to grow LN, I will be first in line to get a second surgery implanting them into my wrist. I think that would square my arm away enough to go without the sleeve most of the time.
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Hello Ladies. Sorry to take so long getting back to you. The NLN conference was pretty interesting and I learned a lot. There is a lot of cutting edge stuff going on in lymphedema surgery. After talking with several surgeons and a number of therapists, the consensus on top surgeon picks are Dr Granzlow (LA), Dr Chen (Iowa), and Dr Klein (Orlando). That is not to say that the others aren't also good, but those are the top dogs.
There is work going on with developing new lymph vessels, but developing in vitro nodes is unlikely.
The other thing I found out is that the reason my arm is really not reducing in size is that I have mostly solid state disease rather than fluid. That is why my LE never really seems to change; I don't have LE "flares". I just have it all the time. That also means that the transfer is never really going to work. Eventually I will get the suction assisted protein lipectomy (SAPL) and then possibly a bypass, but that is down the road by about 5-6 years. SAPL is the only option for solid state disease.
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Susan, Thx for attending and for news. Was it Stanley Rockson that talked about developing lymph vessels thru drugs?
Interesting about your SAPL upcoming. Maybe they will have growing lymph vessels as treatment before that. Is solid state meaning pronounced fibrosis as termed in Lay "woody arm" Because if so I think you can soften it up with chip foam and I heard lazer but it's a lot a work.
Good to know top dogs? Wish we had some in Canada. Lymph surgeons almost nil here andNo one doing transfers that I know of.
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Solid means that the primary cause of my arm still being big is adipose - there is a very complex and poorly understood cascade in LE that triggers adipose cell precursors to develop into adipose cells. Most people with LE never get to that stage, but apparently I did very quickly after developing LE, which is why a lot of the standard treatments didn't work. My arm isn't woody and does have some areas that still pit to some extent, but there are substantial parts of my arm that are enlarged but don't pit.
Yes, Dr Rockson was one of the people who talked about growing lymph vessels. He also talked about a current study on ubenimex that is going very well. Unfortunately, it is not available in the US yet. I would love to get my hands on some. They have been using it in Japan for 20 years, so I'm comfortable that it is quite safe.
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Thanks to you all for the information you've shared!
Susan, you've probably seen that there is an ubenimex trial that's recruiting, but just in case, here's a link:
https://clinicaltrials.gov/ct2/show/NCT02700529
Oh sorry, just saw that's for LEG lymphadema!
Still, you could call the contact nurse and register interest in case they know of another trial.
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SusanRachel, thanks for the information on the top-pick surgeons. I think of myself as a wandering nomad when it comes to LE treatment. I'm always looking around and move from treatment to treatment, always searching for more fertile territory! I'm willing to go wherever I have to if it means I can get the best chance of success, and going to a top doc is high up on my list. I definitely am familiar with the reputations of Granzow and Chen but had never heard anything about Klein in Orlando. I immediately started to do some research on Klein, mainly because Orlando is the closest place for me, geographically, and so that makes it an attractive option. Interestingly, at least from what I could find so far, he only offers LVNT and has been doing it for the past 2 years. I met with a doctor in NY and Dr. Becker, in 2012. So LVNT has been on the map for quite a while. Both Granzow and Chen have been experimenting with additional treatments/surgeries for quite a while now and both are considered cutting edge in the field. I guess that's why I find it surprising that Dr. Klein was mentioned to you as a top doc. It could very well be that he is extremely proficient with LVNT. I know I read that he went to Paris and learned LVNT directly from Dr. Becker. So I am in no way putting him down.
My plan was to go to Chicago after the holidays and have Dr. Chang perform LVNT. At this point he has done thousands. (He recommends having LVA and LVNT together. So you see what I mean about cutting edge. But my insurance doesn't cover LVA and I don't intend to go $5000 in the hole for the LVA. My LE truly isn't bad enough for me to make that kind of financial investment, especially when I don't have it to spare.)
So once again I am at a crossroad. I really don't know what I'm going to do. When I met with Dr. Becker, LVNT was the rage. Circumstances caused me to hold off and then LVA was introduced. So I was happy I held off. I'm always waiting to see what is right around the corner. I do pay attention to my hesitations and it certainly isn't because I am timid. I just think instinctively that I will know when the situation feels totally right.
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Trisha, maybe I got the wrong guy in Orlando. Is there another one? The three people that mentioned him all said "the guy in Orlando". I googled a name and Klein was the first one I saw. I didn't expect there to be another, so I didn't keep looking. I know there was someone doing surgery there three years ago because when I first developed LE, my oncologist told me that he had had a patient with LE go to Orlando for surgery and she had done very well. That exchange took place in June 2015 and the oncologist mentioned that he had not seen that particular patient in a while.
In any case, Granlow and Chen for sure. I did overhear a conversation between Granlow and Chen where they discussed some surgical disagreement that the two of them have with Chang, but because I was not a part of the conversation, I don't know what it was or how significant it was. I did gather that they were rather frustrated about it.
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Hello all,
First of all, Happy Thanksgiving! I hope it's a beautiful day for you all.
I have my first exploratory appointment with the LVA surgeon next Monday and I'm writing to ask for suggestions.
The six points below are the questions I've come up with.
If any of you have any more suggestions, I'd be very grateful to have them!
- how many microsurgeries
- immediate post operatory expectations (time off work, arm bandaged, etc.)
- side effects, short /long term
- percent success / failure (and how do they define those two terms in their practice)
- number patients satisfied / dissatisfied
- future without sleeve? night sleeve? physical therapy?
I'm posting this in all three open threads on lymphedema microsurgery :
LVA surgery - bypass surgery - Have you done it?
Had VLNT or LVA? Please share here or message me!
Microsurgery after breast cancer treatment
because I'm not sure who's on which.
Thanks so much for any help and suggestions!
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So he/she won't be able to answer the "how many" question. That depends on how many candidate locations your arm has. You will have some sort of imaging study to determine where the LVAs can be done.
Ask if they will wrap your arm in the OR after surgery. There is some excellent evidence that doing that improves the success rate and prevents some of the LVAs from clotting. If they don't normally, I would consider requesting that they do for you. Drs Granzlow and Chen showed some videos with and without wrapping and the difference was impressive.
Also ask if they have a lymphedema therapist work with you in the immediate postop period.
On the "future without sleeve" thing, they can only give percentages, but you are not a population. You are a single data point, so you could be above the curve, below the curve, or right on it.
Good luck! Who are you seeing?
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Thank you so much for your reply, SusanRachel!
Your advice to ask about wrapping is very useful, and about the therapist, too.
I live in Italy, so am seeing surgeons here.
Thanks again!
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Susan Rachel, very interesting and thank you! Makes me rethink my choice of surgeon...
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Hi lovelies!
My mother is a 3-time breast cancer survivor and her lymphedema has gotten a lot worse the last year (it will swell up instantly by bending down to tie her shoelace). Has anyone had any success in completing the LVA surgery (lymph node transfer surgery) in Canada or Asia?
Thanks! Any info would be very much appreciated!
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Mandy. If your mom is that bad off with swelling she might need to start wrapping again. She should see a well qualified lymphedema therapist asap. She daily needs to be in a sleeve and hand garment for sure to keep swelling at bay if she’s not in one already.
I’m sorry I’m just learning about surgery techniques myself. I know if your not to progressed it has better outcomes.
Congrats to three time survivor
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SusanRachel, I have had my first meeting with the closest LVA surgeon and he does NOT wrap in the OR after surgery.
I've set up a 2nd opinion with the only other Italy-based surgeon who does LVAs and I would love to have videos or other evidence that it makes a difference to show her.
Can you or any other women here point me to any? I've done a literature search and have found no studies, only reports: the Oxford (UK) group seems not to wrap, for example, but success rate seems high.
Thanks to anyone who can link me to info!
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So here is my excited/exciting(?) update. After reading SusanRachel's post I decided to rethink my choice of surgeons. I reached out to Dr. Chen in Iowa and he immediately emailed me back. I decided that I wanted to have the surgery with him and he had his nurse contact me. Check this out. Dr. Chen doesn't even do LVNT anymore with nodes!!! He is now using flaps and transplanting the flaps. He has also "invented" a few more processes that he is using. The nurse said I would have to go to Iowa twice, once for the spy test and consult and then after they got insurance approval, for the surgery. She said it would be 4-6 months after approval. Trying to figure out flights, staying over, making early appointments etc., I asked if I could have the spy test done around here. His nurse didn't think they were doing it around where I am so I decided to email Dr. Chen. He emailed back and said I could do everything at once, I wouldn't have to wait. When I told him what the nurse said, he said he would call me if I supplied my phone number!! Last night he called me and I was blown away. He spent almost an hour on the phone with me. He explained all of his new procedures to me, explained which patients were the best candidates for which procedures. He told me not to worry about insurance and that he would do everything at once but the hospital would require me to sign saying that if insurance doesn't cover any part of the procedure, I would be responsible for it. He doesn't anticipate it happening, but that way, I can get the surgery done without waiting for approval and just make the trip to Iowa once. I was so excited I almost couldn't sleep!!!
Here's the adventure part of it. He won't know which surgery is best for me until I am out there and have had the spy test! So I won't know when I leave home whether I am in Iowa for one week, two weeks, three weeks, whether I will need a hotel for all or just part of the time because one of the procedures requires a one week hospital stay so they can check the health of the flap, and then they want you there two additional weeks, whereas the LVA I'm pretty sure doesn't even require an overnight in the hospital, so you're in Iowa just a week after surgery. But I don't care!!! I'll figure it all out once I'm there!!!
I started on this journey in 2012, visited with 4 different out-of-town doctors, and had multiple tests done - but never pulled the trigger. This is the first time I have felt totally sure and confident I am making the right decision. In terms of LE surgeons/microsurgeons, Dr. Chen is a rock star!!!Trisha
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I’m jumping for joy for you! Please do include us in all aspects of your journey. I can’t wait for you to tell us more!
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happyTricia - if Dr Chen is at U of Iowa (correct?), can you stay at the ACS Hope Lodge there? If you can get the paperwork done, it is free.
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Such amazing news Trisha!
Whoo hoo!! Cheers! YAY!
🎉🎉🎉🎉🎉
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Trisha - glad Dr. Chen is working with you. He is amazing! And his whole staff is great too!! If you talk to his staff, there are several hotels that offer discounts for people (and family members) using the University hospital. Everything is in very close proximity to the University as well. I am not surprised he is finding new techniques. From the 1st time I met him, you could see he truly cares about helping those of us with LE. I am beyond happy I took the risk 4 years ago and trusted him for my LVA. It has proven to be worth the 8 hour surgery with overnight stay and multiple 3 1/2 hour road trips - I have no swelling in my arm and feel a million times better than I did pre-op.
I wish you all the best in working with Dr. Chen and hope you let us know how everything progresses!
I really need to schedule a follow up spy test with him, so he can keep accurate records of his LVA cases so many years out! Looks like hubby and I will get another road trip!!!!!
Mary Jane
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Thank you thank you thank you!!! I am really excited. And thank you SpecialK for the heads-up on the Hope Lodge! That may be the entire answer to my prayer!
I've always thought of life as an adventure so I am looking at this the same way.
There's something exciting about being in the Heartland on the 4th of July! I'll get to see how the Midwest celebrates the 4th! I am thrilled to share every step of my journey and thank you for wanting to hear about it. So here is what I am currently doing. I have to be in Iowa on Monday, July 2nd for my spy test. In the meantime I had planned a trip with one of my sisters in May and we were flying Southwest. Well she had to cancel and so now I am sitting with a nonrefundable ticket on Southwest. Airfare isn't cheap from RI to Iowa and Southwest doesn't fly to Cedar Rapids. But they do fly to DesMoines. And I can take a greyhound bus from DesMoines to Iowa City. So I am now trying to figure things out so that I can put the SWA ticket to good use. (If I can find a train between DesMoines and Iowa City all the better.) So this is the less exciting part of the venture - getting myself to Iowa. I am definitely going to look into the ASC Hope Lodge immediately since they might be entirely understanding of my need for flexibility until I find out exactly how long I'll need to be in Iowa - which won't happen until I get there!
mjs, are you ready for this? You remember your LVA surgery that lasted 8 hours, 4 years ago? It is now OUTPATIENT SURGERY!!! Talk about advances in medicine!!! So hoping that's what I end up with. Dr. Chen told me that he was looking at his slides from 2012 and that the cuts used to be 3-4 inches (I think that's what he said) and they are now 1/2 inch!!!
Well that's it for now folks. Nothing too exciting to tell but I will keep you updated as there are things to add. And mjsgumbas, I owe you big time because you are the one who turned me on to Dr. Chen 4 years ago!!!
Trisha
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Been awhile since I checked in here- Hi everyone!
Insurance denied my LVA last year so I went back and had the Spy test again. To no one's surprise, there was more damage/leakage. Dr. Chen and staff used this information and insurance is covering!
This Friday, I will have LVA surgery with Dr. Chen in Iowa City. Send your prayers to all involved- I am so excited. it is an 8 hour surgery- outpatient. I will update as soon as possible.
HappyTricia- let me know if you need transportation in July. I live in Iowa and would love to help you if I am available.
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teach6 - wishing you all the best with your upcoming LVA! I believe you are in great hands and wish you a speedy recovery - but most of all - RELIEF from this icky lymphedema!
Please let us know how you are, when you are up to typing again! I thought of my 8 hour surgery as the best sleep I had gotten in a long time LOL!
All the best!!!!!!!!
Mary Jane
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Thx girls for reporting in. We need your feedback.
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Hi all! Hoping things went well for teach6. Can't wait to hear from her when she is up and about. I didn't realize the LVA surgery was still so long. When I heard outpatient, I was thinking a few hours. Silly me!! I really so appreciate all the support and help I continue to get from the women here. And thanks to Special K, I am going to be able to stay at the Hope Lodge! Well, I can stay there as long as I have the LVA and not the flap transfer. I am going to go to Iowa alone - my choice - and you have to be able to verify that you can take care of yourself, bathe, eat, etc., without a "care taker" to stay at the Hope Lodge. The doctor's office had to submit a form saying I was able to do all those things. The understanding we have (I, the doctor's office, and Hope Lodge) is that I will be at the Hope Lodge as long as that's the case, meaning that I certainly can stay there until my surgery. If I find out after the spy test that I need the flap transfer, I will make provisions to stay in one of the local hotels. As Mary Jane pointed out, most of the hotels give hospital discounts, so that will be fine if it happens.
The one thing that did surprise me in trying to make all my plans is that there isn't a lot of local bus service in Iowa City! Being on the east coast I'm used to have bus, train, and commuter rail service at the airport and so automatically figured the same would happen in Iowa. Even Des Moines is lacking in it. So it's been a little more daunting because I really am trying to economize where I can. I'm sure it will all work out and the important thing to me is that I'm doing it. About the LVA - I fear the same thing is going to happen to me if I should have the LVA done. In fact the doctor's office pretty much assured me that insurance won't cover it. But I did make the decision that I am going to take that chance and if it means I have to pay for it, then I will. I know they'll work out a plan so I can pay it over time, and thankfully, the major costs are covered, those being the hospital stay and all the meds/anesthesia that goes with it. It's only the surgeon's cost that isn't covered.
I guess that's about it for now. I will report more as soon as I have more to report! Stay well sisters!!
- I can't bring myself to use those goofy emoticons again!Trisha
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1 day out of surgery and feeling good. I haven't unwrapped yet to see what it looks like. Went to the hospital at 5:30 am and left about 5:00 pm. The staff, nurses and doctors were great. Dr. Chen's surgery part was 6 hours. They mapped and prepared for surgery with me under for the 1st hour.
I had 7 incisions and 11 connections. Dr. Chen was pleased with the results so far. He talked to my family afterwards. I am on antibiotics and took pain medicine last night. Just taking Tylenol now. Feels like an itchy bruise. Keeping my arm elevated and in a sling to remind me not to use it.
I go back to see Dr. Chen Thursday. I am taking a week off work and plan to go back, if all is well, on the 30th.
I am so excited to see the progress! I will update when I know more.
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I'm very happy for you, teach6!
Do you have to wait until Thursday to unwrap it? That'd be hard for me?
Here's to great progress!
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