Topic: LVA surgery - bypass surgery - Have you done it?

Feb 15, 2014 06:04AM carol57 wrote:

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. 

Feb 15, 2014 08:14AM vlnrph wrote:

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?

Feb 15, 2014 11:38AM carol57 wrote:

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?

Feb 16, 2014 06:53PM carol57 wrote:

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. 

Feb 24, 2014 10:58AM carol57 wrote:

amoc, is it reported on their website? 

Feb 24, 2014 01:37PM Amoc1973 wrote:

Just checked. It's on pubmed. Published 11/2013. 

Mar 6, 2014 02:06PM BlueFox wrote:

Here is the link to the Anderson study.

http://www.researchgate.net/publication/258115921_A_prospective_analysis_of_100_consecutive_lymphovenous_bypass_cases_for_treatment_of_extremity_lymphedema

Mar 7, 2014 01:06AM BlueFox wrote:

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

Mar 7, 2014 01:22AM BlueFox wrote:

Another article about the by-pass surgery can be found here:  http://www.lymphoedema.org/Menu3/5Articles%20by%20healthcare%20professionals.asp

Mar 7, 2014 03:36PM BlueFox wrote:

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.

Mar 8, 2014 03:07AM BlueFox wrote:

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

Mar 9, 2014 08:07AM carol57 wrote:

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.

Mar 9, 2014 03:57PM carol57 wrote:

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.

Mar 10, 2014 05:15AM carol57 wrote:

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. 

Mar 10, 2014 06:34PM Amoc1973 wrote:

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.