LVA surgery - bypass surgery - Have you done it?
I recently traveled to the University of Iowa to meet with Dr. Wei Chen a supermirosurgeon/plastic surgeon. I was referred to him by my PS. I had the Indocyanine Green Lymphography done and was amazed at what was seen both in my healthy arm and diseased arm. I was diagnosed under the Campisi Staging at Stage 2 as my LE is, right now, centralized in my upper arm. Although most of my swelling is in my hand, the Stardust and Splash patterns are confined to the area of my tricept.
Dr. Chen believes I would be an excellent candidate for LVA, as my symptoms have only been around about 6 months. He believes better results come with early intervention. I wear compression sleeves (often) and a glove almost all of my waking moments. I do massage also. It hasn't progressed, but it isn't relieved with any of the treatments.
In our lengthy 2 days clinic with Dr. Chen he explained in detail how the surgery is performed, showed us actual video and covered his results since he began performing this procedure. His statistics have been: no patients symptoms worsened, 90% saw some form of relief and 10% of the 90% were cured. There will still be therapy and garments for some time post-op, but the intent is to ease the necessity of these daily.
An 8 hr surgery - although minimally invasive - seems overwhelming. But if they don't try - they won't know! The surgery only effects the skin and fat layer - never reaches muscle, so the recovery/pain is nominal.
These surgeries have been performed in Asian countries for decades!!!!!!!! With favorable results!
I've tried to seach thru these threads to find someone who has had the procedure done and what the results were. So, please let me know if you had success!!!!
Comments
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I'm bumping this to make sure it stays visible on the LE forum page. I'd love to hear from anyone who has had this surgery, too.
mjsgumbas, what was the IG lymphography procedure like? Any discomfort?
I'm not surprised to learn that the scan found signs of LE in your healthy arm, because researchers have used the newer imaging technologies to show that LE is a systemic disease, even when symptoms are local to an injured area. My LE is barely visible in my arm, but I sure do notice that anytime I injure my leg on that side, even a simple ankle turn, I swell more readily than on the other side and it takes forever and ever to resolve the swelling. Did Dr. Chen suggest that the LVA surgery does anything to address the systemic LE issues, or is the improvement and occasional cure limited to just the limb where he's performing the surgery?
The limited information available about node transfer outcomes also suggests that people with less developed LE do best in that surgery, too.
Thanks for asking this question. Helensamia is keeping a blog and inviting people with node transfers to share their experiences there. It would be great if a sharing site, here or elsewhere, were available for those who have had LVA.
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carol - there were no signs of LE in my healthy arm! Perfect linear patterns. I had perfect linear patterns in my diseased arm from my hand to my elbow. All the stardust & splash patterns were in my upper arm near the tricept.
The discomfort was tolerable. They inject the dye in the webbing of your fingers, 2 in each hand. The dye is injected into the skin - not below the skin or into a vein, that was painful, but didnt last long.
I did not ask Dr Chen about systematic relief, as I did not consider it. My main cocern is the arm I guess. But I will email him and pise the question and get back to you.
I wish there was more information! I was asked to participate in a herceptin clinical trial even though I was HER2-.... I didnt end up having to do chemo so did not get into the clinical. I look at this as a clinical of sorts and more people need to do it to know if it will work.
Dr. Chen is working on a standard / guidlines for LE treatment. Right now 5 different therapists will have 5 different forms of treatment. He genuinely wants to help people suffering from this disease.
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My plastic surgeon's office in Milwaukee now has a physician doing these procedures: Dr LoGuidice. I'm not sure what insurance companies cover when the condition involves minimal swelling. Have you thought about a second opinion/cost comparison?
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I was told if a dr deems it medically necessary, the procedure is covered. This is technically a 2nd opinion as I have met with an LE specialist & physical therapist. So far it hasnt worsend but it also hasnt gotten better. We all know how time consuming all the LE therapies are. If this procedure can aliviate some of the constant attention, I am willing to try.
Repeat PT and new garments are expensive also. There are so many unknowns - will it get worse? When will it get worse? Even though I follow the regimine religiously, there are bad days without explanation... Its a frustrating situation we are all in!
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mjsgumbas, thanks for clarifying on your unaffected side, and for describing your experience with the imaging. If Dr. Chen can share his observations on any systematic benefit of the LVA, that would be quite kind of him. I wonder if he's going to be speaking at this fall's NLN conference. I'm sure that surgical solutions will be an important topic and I hope that NLN brings together some of the surgeons doing these procedures, for a roundtable discussion.
vlnrph, have you ever had a consult with Dr. LoGuidice?
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I also hope the NLN has a session at their conference. I have not personally looked into this option, partially because I'm having enough trouble with my insurance company paying for the Flexitouch as well as an MRI they initially denied. I can imagine their position that an 8 hour procedure is investigational or experimental and therefore not covered.
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It seems strange that there can be so much variation in insurance coverage for the surgeries. I'm amazed that any insurance covers them, given the lack of random control trials to demonstrate efficacy. Hopefully the NLN conference will include insurance update discussions.
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There is a recent retrospective analysis of the results oh this procedure at MD Anderson. It showed very good results with early stage lymphedema.
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amoc, is it reported on their website?
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Looks like just the old, smaller 2009 study is up on the website. I googled for the latest study. It's the same guys though. The word 'study' is really a misnomer. It's a retrospective analysis of all the data. It's probably on pubmed though.
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Just checked. It's on pubmed. Published 11/2013.
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Thanks! I'll be reading with great interest.
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Here is the link to the Anderson study.
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bluefox, thank you! One of the most interesting parts of that report to me is the newer imaging technique's ability to predict the best candidates for surgery. Even as the surgical treatments continue to be refined and followed up, the imaging technique probably has even wider application for diagnosing and determining the best treatment for difficult LE cases. Some people can't seem to budge their LE no matter how they try, and it seems like this imaging method might eventually be a common way to find out why.
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There is a trial of the Lympha technique in a New York hospital. This technique developed in Italy by Prof Campisi uses bypass surgery at the time of ANC to prevent lymphoedema developing in the first place.
http://nyp.org/news/hospital/lymphedema-cancer-patients.html
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And another New York hospital does the supermicrosurgical bypass operation http://www.blechmanplasticsurgery.com/lymphedema-...
Prof Campisi in Italy and Dr Koshima in Japan are pioneers of successful lymphoedema by-pass surgery, and have been working in this area for decades. I believe they use slightly different approaches. I think the supermicrosurgery techniques that surgeons are starting to use more and more are based on Dr Koshima's work, whereas Prof Campisi's operations are based on microsurgery (but please correct me if I've misunderstood this).
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Another article about the by-pass surgery can be found here: http://www.lymphoedema.org/Menu3/5Articles by healthcare professionals.asp
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bluefox, thank you again for supplying us with study links. Oh, and I took a peek at your blog and wow...I just love it! I always give books for birthdays of the young people in our family, and I've bookmarked your list of the best books for young readers. It's a wonderful resource, so thank you for that, too!
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Thanks so much for your kind comments about my blog. I'd never done a blog before and I had no idea whether anyone would find it interesting, but it has had over 7,000 visits in the last 6 months or so. Quite a few people seem to keep coming back.
Many of my Top 100 Children's Books are for the 10+ age range and tend to be UK based, although there a few US titles (eg Holes - brilliant book!). These recommendations are also good for adults who read children's books - there are lots of us out there! Adult fiction is genre-based whereas children's fiction can be cross-genre.
Thank you for suggesting an aeolian harp for Footsteps (assuming the comment was yours?). I really like the idea! I can see a very creepy scene involving the harp...
Returning to the topic of lymphoedema by-pass surgery, another useful reference is http://www.lympho.org/mod_turbolead/upload//file/...
It seems to give an very balanced overview of the different types of surgeries and the extent to which they are supported by evidence. I couldn't find the date on it, but it includes references up to 2011, so it probably dates from around 2012.
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bluefox, the aeolian harp idea was not mine, but it's brilliant!
And I'll be looking at that link, another great resource.
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Hi Carol,
For some reason, my link didn't work so you have to click on: http://www.lympho.org/ and choose resources to see it.
Having done this I can see that the document on surgical intervention is dated 2012 as I had guessed.
Actually the main website also looks useful as it contains links to national organisations in various countries (click on ILF Partners).
The ILF are having a conference in Glasgow in June 2014 and it will be interesting to see what new documents are put up on the website afterwards. They have information on all their previous conferences
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blue fox - thank you for all your info! Dr Chen (who i am probably going to have do mine) studied under Dr Koshima. I was happy to hear you mention him! Should hopefully know Mon when I can have it done. Just got back from a carribean cruise & this LE stinks!! Hope it will be so much easier after!
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bluefox, I read the ILF document this morning, and it's a great resource. I found the discussion to be an objective review, including the article written by Drs. Chang and Suomi, microsurgeons at MD Andersen. I've watched presentations by a few microsurgeons doing LVA and node transfers, and those presentations have not generally been balanced. In one case, I thought I was listening to a marketing spiel. But the Chang and Suomi article presents the surgeries as having good promise for the future, and they explain why that is. But they also acknowledge that there's limited evidence to date on efficacy, and more work is needed to establish that.
Dr. Cormier's review of all the published evidence to date is very well done. She did her work under the auspices of the American Lymphedema Framework, part of a larger project that the ALF is undertaking to sort through all kinds of LE studies, to identify those whose study designs meet a high standard of evidence.
To me, the biggest limitation she cites from the body of evidence is that absent random controlled trials, most of the studies to date have the weakness of selection bias.
Here's what she says about that:
In addition, the published studies are primarily observational studies which do not include comparison groups. The reported success of many of the surgical procedures for the treatment of lymphoedema was likely strongly influenced by the selection of patients which was not well defined in the majority of studies. Randomised clinical trials are designed to compare treatment arms among patients with similar characteristics. The primary advantage of randomised controlled clinical trials is to eliminate patient selection bias, which ensures that the findings and outcomes of the study can be attributed to the procedure or treatment itself rather than to the more favourable characteristics in a particular group of patients.
In other words, there's no way to identify the range of patients for whom the various surgeries might be effective, because the surgeons pre-selected their patients to maximize effectiveness of the surgeries. Now, if I were a surgeon, I'd want to pre-select too...of course they don't want to perform a surgery that's not likely to work for a particular patient. And as a patient, I'd want to make sure I'm a very good candidate for the surgery. So there's not an inherent criticism of how the microsurgeons have chosen their patients, only that their approaches to date have not provided the kind of evidence that can be generalized. Dr. Cormier's review discussion ends with the conclusion that additional studies are required to select appropriate patient populations who would derive the greatest benefit from surgery.
I was surprised to see how many patients were included in the Campisi LVA study (1,800) and that follow-up was 120 months. His reported limb volume reductions are very impressive, too. His study is large and long, and he also used water displacement as his measurement technique, the gold standard. These study characteristics are great, although the study has the same selection-bias problem Dr. Cormier mentions.
What I see here is a genuine quandary for doing random controlled trials on these surgical techniques. Would it be ethical to randomly assign a group of LE patients to LVA (or node transfer for that matter) without pre-screening to ensure a probable benefit? There needs to be benefit to balance surgical risks, so I don't see that happening. Also, I wonder how extensive insurance coverage is for these surgeries, which also would seem to restrict its application to a general population of LE patients. I'm pretty sure that at the September NLN research conference, there will be one or more presentations on surgical solutions. Last time, there was a fascinating point/counterpoint debate, and I hope they'll do that again, using information from and inviting surgeons who have performed these more recent surgeries.
To anyone considering one of the LE surgeries, I highly recommend the ILF resource that bluefox linked to. Use her link to the ILF website, then go to 'resources.' It says 'click if you want to purchase' but it's a free resource that will download after you click..no payment required.
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Carol,
Your commentary is thoughtful and incisive and you do an excellent job of highlighting the salient points.
Randomised trials are definitely needed to show cause and effect, and also to give a more accurate estimate of the extent of the benefit.
However you can still have a randomised trial on patients who have been pre-screened, say early stage (objectively defined) upper limb patients. The results of the trial would only be valid for those sorts of patients, but because the patients are then randomised to decide who receives what treatment, say lymphatic bypass or conventional treatment, you can be more confident that any observed differences in results between the two treatment groups really are in fact due to differences in treatments. If you don't do to the randomising, then it is possible that the two groups still had different characteristics - perhaps one group still had worse cases than the other one, despite the study being restricted to early stage patients. A randomised trial avoids this problem because the assignment of patients to treatment groups is random.
Even with a randomised trial, there is still be possibility of the placebo effect. This is because the patients and the doctors know what treatments they are getting. Perhaps this was a factor in patients who noticed an improvement, but no volume effect was recorded? Maybe or maybe not, it is just not possible to say. With drug trials, they can do double blind trials, when neither the patients nor the doctors know who got which treatment.
I agree with you about the most useful articles being those of Dr Cormier and Drs Chang and Suomi. The latter has helped me understand better why there is there is increased interest in the by-pass surgery now, despite it being around for several decades with mixed and often disappointing results. It seems to be the combination of
i) new supermicrosurgery techniques which allows the lymph vessels to be connected to the lower pressure blood vessels nearer the surface (apparently with the older types of surgery, backflow occurred and the connection got blocked)
ii) the new imaging techniques
The increased interest will generate more studies and more experience, and hopefully still further improvements in technique and technology.
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bluefox, Dr. Chang's article was the first time I understood how the surgeons have seemed to resolve the back-flow problem, i.e. by using imaging that allows them to identify the best location for the venous/lymph vessel connection, including being able to identify and use the most superficial vessels that have the least amount of pressure. It's great progress, no kidding.
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bluefox, I happened to remember this recent study that some of us have been discussing. It relates to the actual science behind the linking of the two systems, and thought you'd be interested in it:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC387123...
The researchers were kind enough to share their view of how this might relate to the anastomosis surgeries currently being done, and they're working with U. Penn to follow up on that question. Interesting, yes?
Besides the kinds of trials you and Carol are talking about, we still need research like this into the hard science behind the operation of the lymph system itself--it's a subject that has been largely neglected in medical history. In fact, many of the observations made of the lymphatics over the millenia have been buried, sometimes for decades or even centuries, as the subject has not until very recently caught on as a medical "hot topic." There are some hopeful recent research directions that should eventually provide us with the science we need to form reasonable theories for intervention. I'm excited about the possibilities!
By the way, the aeolian harp comment was mine--I find them not only stunningly beautiful but magical and haunting. You can find any number of YouTube examples of them and they give me chills to listen to--my favorite is a video of a harp on the cliffs above the sea in southern Ireland. Oddly enough they are not difficult to make, so I can't imagine why the world is not full of them!
Be well,
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Bluefox, I'll confess that when I saw Binney's comment on your blog, I had to check the Internet to find out exactly what an aeolian harp is. Now I'm inspired. We live on a bluff above a lake and it gets mighty windy. I want an aeolian harp! The ones I listened to online are quite ethereal sounding. Somehow there must be a reason that listening to aeolian harp music moves lymph.
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Thank you to each of you who has posted links to studies on this thread! The amount of information here is tremendous. I'm still plodding through it but so happy to have it to read! Thanks again.
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I've been googling randomized control trial in surgery. I saw the first for knee scopes was in 2002. It was done a loooooong time before 2002. prior to that the studies where observational. That's just one example. Something tells me the majority of surgeries are intervention & observation based. But I def could be wrong.
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Another couple of references which may be of interest
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