LVA surgery - bypass surgery - Have you done it?
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Hello mcgis, sorry I didn't see your question until now. I had Dr. Jay Granzow perform my LNT, I think he is awesome! We did have issues with my insurance company, we went through the first two hoops and we were denied. Then we did what is called an "Independent Medical Review" which is when doctors outside of your insurance company look at all of the facts and papers submitted. We were lucky to get 2 out of the 3 doctors asked to give an opinion that the surgery would be beneficial, that is all we needed. Of course there is still the matter of getting the money from the insurance company even after it is approved, they are very stingy in that respect. But luckily Dr. Granzow's office is used to dealing with them and is persistent.
I actually have a follow up with Dr. Granzow in a couple of weeks because I want to talk to him about my cellulitis experience and the progress of my LNT so far (it's been about 17 months since my surgery). I am actually considering doing LVA as well, I know some doctors perform both procedures staggered to get the maximum results. We will discuss this as well.
Hey mjsgumbas, you mentioned that you had some LE in your trunk as well before your LVA surgery? Did your surgeon do any incisions in that area to relieve it, or were the LVA connections in your arm enough to help with this problem? I have slight swelling and discomfort under my arm next to my breast that I have been sort of ignoring up until now, but can't really any more I'm afraid.
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pkeiles - I did not realizes, nor did any PT's mention that the LE was in my truncal area until I noticed an incredible difference after LVA. Dr Chen did not do any incisions above the elbow but amazingly shortly after surgery I had an armpit again! I noticed too, that my bras were not as tight, so there was obviously some swelling there.
I was just called to schedule another spy test (yuk!) for pretty much my 1 year follow up! Time sure flies!! Doing the 3 hr drive 2/15 for the test that Monday morning. Hope to find out, if I do another incision and connection in the top of my hand, how long it will take and if I can get it done outpatient.
With how great my arm is and no longer wearing a sleeve - I am willing to try another set of connections in the top of my hand to see if this swelling will go away completely and if I can give up the glove too!!
Will keep you all posted!
Safe travels for anyone venturing out for the holidays & Merry Christmas!!!
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mjsgumbs, that is very interesting. I actually wouldn't mind going through the pain of a spy test just to see what it shows. Before my LNT surgery 1 1/2 years ago I had a lymphocintography done, but I hear my surgeon is now using the spy test as well. Can't wait to talk to him face to face in less than two weeks.
Please keep us informed of any new developments, and of course I will do the same.
Happy almost New Year to all! 😎
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What's the formal name of the spy test? Indocyanine green something or other? I'm wondering if I've seen video of this test-think I might have-or maybe it's new to me. Does anyone have the formal name at their fingertips? I'm trying to understand why it's painful, which is something I think someone mentioned here.
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http://www.rightdiagnosis.com/medical-devices/spy-reg-intraoperative-imaging-system.htm
Heres a short explanation of the spy. It does use the indacine green dye. A lot of imaging uses the indacine green dye including lymphoscintigarphy...but they aren't the same test. They are usually done at the same time though as you have had the indacine green injected and both assess lymphatics. It's painful because they inject the dye under the skin between the fingers (or toes or both). Ive recently done both tests & it wasn't fun, but also wasn't that bad. Now surgeons are using the SPY in the operating room with the lymph node transfers to verify that it is successful.....they can see the lymph flow through the flap. From what I've been told & read it has lead to the surgery being more successful. Lots of facilities don't have the SPY yet. It's expensive. Places without the Spy camera still verify success by listening to the blood flow with a Doppler which only will verify blood flow (a pulse) & not necc lymphatics. They also will do 'reverse mapping' with another dye. Just like with our original sentinal node biopsies, they can identify the nodes that are the main 'drainers' of the donor site and avoid taking those. It's all pretty interesting I think. I do know one thing....I would only go to a surgeon that uses all this imaging to decrease the incidence of complications. Unfortunately I believe a lot of surgeons are jumping on the band wagon as the lymph node transfer is a pretty simple procedure (for someone who's a micro surgeon )when you dont employ all this imaging & use the groin. I think the anatomy is straight forward & rarely have issues....but these imaging techniques make it all the more safer. I have had small result with LVA surgery. Now that I've had the Spy I see why my results were small (although it has helped). If I would've had all this imaging pre LVA I would've known it would not likely help much & LNT would have been the way to go. I'm so happy to read all the success everyone has had with LNT & LVA. After viewing my results of my tests (mr lymphangiogram, spy, lymphoscintigarphy of all extremities) I have decided to do the LNT. My scans show absolutely no flow out of my arm which is prob the reason I havnt responded to therapy. There is also scar tissue compressing some veins in my axilla which prob is causing issues as well. I feel one must go to a surgeon who truly wants to know 'why' you are having issues & not simply want to do a procedure and see if it helps. This is everyone's choice with their physician if they want to take the risk(s) of these procedures. Please keep posting & I hope everyone is well.0 -
http://novadaq.com/patients/spy-breast-reconstruction
Another link explaining how Spy is used with breast reconstruction alone (without lymph node transplant).0 -
For those of you that have had LVA --- do you have any long term activity restrictions?
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I didn't have any long term activity restrictions. And I don't believe I will after the LNT either. With both activity restrictions for 6 weeks post op. LNT is follwed with CDT so this may limit things a little longer. This is As per my experience. The usual lymphedema guidelines with exercise long term.0
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amoc, thank you for the links to the spy test explanations. Much appreciated
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Hi all. How is everyone doing? Hope everyone had a nice Christmas. I am Dr. Chen from Iowa. I am surprised to come across this forum. I can see that many have questions surrounding lymphedema and its current treatment. I am happy to answer your question(s).
Lymphedema surgery is an evolving science. Every year we find ourselves understanding a lot more about this challenging condition than the year before. We do not yet have all of the answers. But considering how far we have come I believe that the future of lymphedema management is very promising.
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Hi Dr Chen! Thanks for finding us and for being willing to help answer questions!!!!
See you on February 16th!
Mary Jane
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Hi Dr. Chen, thanks for joining us, it is great to have your knowledgeable input and experiences!
I was wondering what your experience was in performing both LNT and LVA on the same patient. Is this something you have done often, and if so in what cases do you think this approach is potentially more beneficial? Plus how much time typically would you wait between the two procedures?
Alternatively, do you find that that in certain cases where LNT does not seem to have made a significant difference that you would do this same procedure over again from a different donor site?
Sorry for so many questions, but I realize that the results for these surgical approaches are long term and difficult to measure/collect.
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Hi pkeiles,
I met with Dr. Granzow at the American Society for Reconstructive Microsurgery meeting earlier this year and we exchanged ideas. He is no doubt a wonderful surgeon!
You've asked some great questions! Combining LN transplant and LVA, or the so-called combination treatment, is what many of us are starting to consider a potentially synergistic approach. Some would perform them in a staged fashion; some would even perform both simultaneously. As far as which approach is superior and what is the ideal timing for the staged approach, I'm afraid that none of us will be able give you a definitive answer. There is currently no conclusive data in the literature.
My current practice is to perform the LVA as first-line treatment as our result has been highly favorable, even in those with advanced disease, and reserve LN transplant only for those with unsatisfactory result or those who had favorable outcome but desired further improvement. So far we have only had one patient who underwent LN transplant and after a year underwent LVA. she experienced substantial improvement after each procedure. As far as your situation, I think the time to consider the next procedure would be when you are no longer making progress, or when your improvement has plateaued. The indocyanine lymphography, or the "SPY test", will also help guiding treatment decision. If the ICG lymphography continues to show significant disease, I would be inclined to proceed with the LVA. I am sure that Dr. Granzow would be able to guide you through the decision making.
The LN transplant is typically considered by most, except us, as a more powerful procedure than the LVA. It is also significantly more invasive. I am assuming that you had the groin lymph node flap done. The next flap option would be either the supraclavicular flap or the submental flap. I would, however, not recommending another lymph node flap, because every time you undergo the procedure you are taking a low but realistic risk of donor site lymphedema. If you are interested in reading further about these two flaps, you can look up Dr. Hung-Chi Chen's publication for the supraclavicular flap and Dr. Ming-Huei Cheng's publication for the submental flap.
By the way, we will be presenting our new modified supermicrosurgical LVA technique at the 2015 ASRM meeting in the late January. I am sure that I will run into Dr. Granzow again at that time.
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Hi everyone, I am from Australia and am suffering from lymphedema which I absolutely hate. I am very interested in the surgery could someone tell me what LVA is please? I have heard of LNT and as far as I have been able to find out, there is only one hospital in Australia performing this and it is 3000 miles away from me as I am in Perth. I saw my BS about this and he does not think it is scientifically viable ( his words ). But he said he would make some enquiries for me and I have to go back to see him in February so fingers crossed. I am originally from Scotland and I know there are surgeons there who are doing this and as I hate this condition so much, I would go there and have it done as I feel I have nothing to lose.
I read about some of you ladies wearing a glove, my PT wants me to wear one as my hand gets very swollen, I have resisted because I do not want to look even more of a freak and disabled. I felt so optimistic about my cancer not coming back but now having this has had such a profound effect on my life I really don't care any more. I just do not want to accept it. i am seeing my BC psych so hopefully she will be able to give me some advice and maybe some of you lovey ladies can share how you feel about this horrible condition. Many thanks
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Dr Chen, what are your opinions on LNT following the LVA procedure? I had LVA done and initially had amazing results. This was pretty short lived....when I was no longer constantly elevating my arm the lymphadema crept back up. Although my arm is still better than preop it is pretty minimal where in the beginning it was amazingly better. My surgeon was only able to do one bypass at my wrist. My Spy test showed a 'stair dust pattern(?)' and the lymphoscintigarphy showed nothing moving out of my affected arm. I'm not exactly sure what the MR lymph test showed as I havnt seen that report. Would you think in my case LNT is indicated? Thanks so much for answering our questions.
Aussie--it is a lymphaticovenous anastamosis. You can google & get more info.0 -
Hi Dr. Chen,
Thank you so much for your detailed response, I found it very helpful. The biggest difficulty in all of these procedures (especially for me) is knowing that it can take a while to see the full benefits, and of course having the patience to wait. :-) It would be great if we could have a central place where everyone can keep a sort of journal detailing what they had done and their progress. I suppose this forum is the next best thing.
I'm so glad you had a chance to meet and discuss your experiences with Dr. Granzow. I think he is a wonderful surgeon and I have 100% trust in his abilities and decisions. I consider myself very fortunate to have him as my doctor throughout this ordeal, and I look forward to having a follow up appointment with him next week.
I believe that in my case an LVA following my LNT from 1 1/2 years ago may be a logical choice to maximize the results, but of course what matters is Dr. Granzow's thoughts on the subject. By the way, I had the LNT procedure at the same time as I had the DIEP procedure, so the longer healing time and more invasive approach made sense for me. As a whole I am happy with the results of both procedures, but would like to have my lymphedema issues even more improved if that is possible. From what I have read it seems like the LVA recovery will be easy compared to what I went through with LNT+DIEP, which is probably why I am so willing to give it a try. Hopefully I can get a spy test scheduled to evaluate if my transplanted nodes are truly functioning. Prior to my LNT I had a lymphoscintigraphy done, the spy test was not so common at that point. I'm hoping the results of these two tests can be compared somehow to better quantify the improvement in my lymphedema.
You mentioned presenting your new modified supermicrosurgical LVA technique at the next ASRM meeting, have you had a chance to publish any of the details or your results with this technique?
Thanks again for your time and regards,
pkeiles
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Hi AussieElaine, if you get a chance to read through from the start of this topic thread, there are some really good details and links provided regarding the LVA procedure.
Good Luck and happy reading!
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pkeiles, our new technique should hopefully be published within the next few months.
Amoc, I would very much like to help you with your questions but I've been asked by the forum moderator to refrain from providing medical advice here, and this would be my last post. You surgeon will be able to guide you further in your treatment and I would be happy to discuss with him/her about the second-line intervention as needed.
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HI Aussie. I have just started to investigate LVA micro-surgery but as you know there is nothing in Australia. I am trying to get as much information about the best treatment overseas. It will be expensive as our private health funds do not cover overseas treatment,
Let's see if we cn help each other to find more info about LVA.0 -
I have received 2 quotes for LVA surgery for 1 arm and 1 leg. In England approx US$47000. Japan US$12000 to US$15000. This is quite a difference. Anyone else have any quotes or suggestions?0
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quick LVA update, nearly 10 months post op, my arm has remained stable with reducing compression to workouts and heavy housework etc. I still get the odd day when my arm feels heavy or I get an achy hand but it soon resolves with compression for a day or so. This has given me a lot me freedom from my compression and I've lost 0.5cm from my elbow and 1.0cm from my upper arm compared to pre LVA. The softness in my arm and the bony prominences of my elbow and hand are still so much better.
I don't think I'll get any further volume reduction, although we have talked about doing another LVA in the upper arm in the future, but for the moment I'm happy with things remaining stable.
Hope everyone's doing well x x x
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Olivia - Thanks for checking in and nice to see your improvements! It is such a relief to not have to rely on compression as often.
I have my follow up with Dr Chen on Monday... making the 3 1/2 hr drive out to Iowa on Sunday. Excited to find out if he wants to do one more incision and connections to relieve the issues in my hand... maybe one day I can give up my Michael Jackson glove for good!!! LOL I've thought about bedazzling it with some crystals or something!!!
I also have not worn my sleeve in I can't remember how long now. There were a few days last week that I over did it with housework & cooking and probably could have stood to wear it for a while, but it came down quickly. It is truely amazing the relief and new freedom of no sleeve. I don't know what I'd do if I end up at the point where I won't have to wear the glove anymore. It's become a part of me and I feel naked without it
I hope all are doing well and that those of you who posed questions to Dr Chen were able to find answers. I know he really wanted to reach out to help.
Hope all are staying warm... I am looking forward to my cruise in a few weeks - can't wait to get out of the subzero windchills... I am not a fan of winter!!!
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Mjsgumbas that's great news, let me know how it goes with Dr Chen, I've briefly discussed doing another incision in my upper arm with my surgeons so would be interested to know what your surgeon thinks, I would be up for it if they think the risk of making things worse is low as the op itself is relatively easy to recover from it and pleased with the results I did get. I'm meeting them again sometime in the spring. Enjoy your holiday!!!
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Hello everyone! I am scheduled to have a bilateral DIEP and lymph node transfer surgery at the end of March. Trying to get all of the information that I can! Thanks in advance!
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alycallie - I know there is info somewhere on this thread or links to LNT that were posted here, don't remember off the top of my head who it was that posted the info, but I believe you can find some help.
I wanted to post earlier this week after seeing Dr. Chen on Monday, but time just slips away... The appointment went well. Had another "spy" test done and there were beatiful linear patterns throughout my forarm and upper arm - no stardust or difused patters in either area at all. Only issue still remains my hand. There, there was substantial stardust patterns and very little if any linear patterns
but all in all, my arm has progressed amazingly! Dr Chen is very pleased with the outcome. We compared measurements from pre-op 2/14 thru this last appointment on Monday and ALL of my measurements have decreased from .8cm to the best of 3.9cm. The decrease of 3.9 was 10cm above my elbow where I had the initial discomfort and swelling (and massive stardust pattern) prior to surgery. I thought that was unbelievable!!!My hand however, increased just over .5cm. Dr Chen would be willing to try to make some LVA connections in the top of my hand - and I am willing to let him. They are going to try to work things out with my insurance and we will formally decide from there. With such positive results over this past year, I am willing to take the risk and see if he can aleviate the issues in the hand!!
He re-reviewed all of my spy tests and was unable to see clear lymphatics, so if I agree to the surgery, it may be, in a sense exploratory. He will need to make an incision and hopefully find viable lymphatics to make the new connections. He very well could make a few incisions and not be able to make any new connections, but it's a chance I am willing to take.
Other than the 3 hr ride to Iowa, I have not worn my sleeve since September, even with yard work, housework and shoveling snow, I faired fine with no noticable swelling. He has downed my Clinical Staging to 1B!!!! There is definition in my arm, I have a complete elbow and prominent wrist bones.
He was discouraged by no longer being able to participate on our forum, as he knows there are MANY questions, but not many answers available regarding LE. He is, as always, available to talk - PM me if you'd like his contact information.
Hope you are all well and braving the winter! I am out of this below zero ickyness in 10 days heading to the Carribean - sunshine & sand make me very happy!!!!
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Did all of you have to have an MRI with contrast prior to your surgery? I don't want to go near another MRI machine when contrast is involved. My hand is still paying the price and I will avoid it like the plague...
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Nordy - I did not have an MRI before the surgery. I had a vascular ultrasound prior to surgery to ensure there were no issues with the vascular system and that was it.
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mjsgumbas: great news about your follow up, seeing the new linear channels is amazing and real evidence that the anastomoses are working! I hope you get the go ahead with surgery for your hand. My surgeons have said they have made incisions in areas with no visible channels on the dye test but have then found them during some during the operation so as long as you know the risks it sounds like its worth giving it a try!
BTW I've never had any MRIs or ultrasounds just the ICG dye test where they inject a tiny amount of dye into your wrist (local anaesthestic used) then they looked at my lymphatic channels with an infrared camera, minor discomfort only from a few injections and dye takes a few days to fade
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Olivia - I was told the same, just crossing my fingers if it gets approved, that we will get lucky and easily find some good connections!!
That's weird, they do your ICG dye injections in the wrist (ouchie). Mine have been done in between my fingers in the webbing and they use a numbing spray - which does not at all help. It is very uncomfortable, but luckily only for a short time. I think with having it done so many times already, it isn't as bad anymore.
Hope you all are well!!!
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I'm rapidly approaching my date for very big surgery - revision of my latissimus dorsi construction that has fallen out to the side and VLNT in one. I'm scared to be taking this big leap; but I'm hoping the quality of life improvement I get will pay off. My biggest fear is donor site lymphedema. I would not be able to handle that whatsoever.
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