Lymph node transfer

carol57

Maxine, why not send a private message to the moderators, asking about that? It would be great to be able to identify members who had LNT so we could send questions their way.

Maxine58

Well, hi Ladies! I'm now in week 6 of post op for VLNT and thrilled with the results. I am wearing my sleeve and gauntlet 2 days on and 1 off, and using my faithful jovipak under a snug t shirt for sleeping, but just this decrease in compression has made me feel so much more comfortable and hopeful. I see my CLT twice a week for MLD and she says she is seeing no buildup at all and just occasional normal post-op swelling. We are going to very slowly reduce the number of days for compression, measuring every other visit and see how that goes for the next several months. Dr Massey has my sincerest gratitude and unwavering trust for helping me finally begin to feel like me again after 4 years.

I hope others that feel like there is no answer will keep reading and searching for their best solution and never give up! Ever!!

carol57

Maxine, that's great, great, great!  Thanks for the update. I suspect lots of us want to follow your posts, and this is such a wonderful report.

pkeiles

Hi there, I had LNT the end of July 2013, and I have some theories about why results are hard to locate. In a nutshell, I believe it can often be very hard to quantify the results. Also, as has been stated before, the full benefits of this surgery can not be determined for up to 2 years.

I myself have not experienced an immediate "cure-all" from this procedure, yet that is. Although I do believe there are some improvements, it's very hard for me to quantify. Let me explain my situation a bit better. I have very mild lymphedema, not more than 1cm of measured difference at a couple of places in my arm. However I have a constantly present pain/ache, mainly in my elbow and forearm, that before the surgery was present about 90% of the time. After the surgery, I tried to go cold turkey with no sleeve, but wearing one was the only thing to make the ache feel less agonizing at times. It's been about 6 months now since the surgery and I find I can go much longer without feeling any aches when not wearing a sleeve. Before the surgery I wore my sleeve the whole day every day, now I find I can often wear it half a day or less, depending upon the day. Also, the pain/ache seems to be less then it was before the surgery. It's sort of a trade-off for me between a mild annoying ache and the annoyance of the sleeve. Sometimes it's simply a wash and I just go without the sleeve.

But I currently still do have that same "mild" level of swelling in my elbow/forearm area, which it why I believe the ache is still present. I also think the surgery could prove to have not as great results in my case because so many nodes (26) were taken in my first surgery. My doctor believes it is too soon to judge the full success of the procedure and the swelling can still get better. I'm trying to remain optimistic and hopeful, but it can be hard sometime. :-)

carol57

pkeiles, thank you for the update!  Going from memory (always dangerous in my case!), I recall seeing one of the few research discussions about node transfer, and it seemed to have concluded that the best results are experienced by individuals with mild LE, so you seem to be a good candidate, and maybe the 'tincture of time' will deliver the results you're hoping for.  

pkeiles

Thanks Carol, amen to that hope!!! 

Helensamia123

Another thing that helps the LNT work is having it as soon as the Lymphedema starts or within just a few years as the existing Lymphatics are still intact and the nodes can go to work !! The less on going damage to the lymphatics the better... Fibrosis and on going bouts of cellulitis can effect the lymphatics prior to the LNT... In my case to the leg it was 11 years since the LE started and many bouts of cellulitis so results are slow but I still feel there are improvements in texture, softness and so far for me no infections since the surgery in March last year ... so I am happy with that.. I still wear a stocking and feel I probably always will but maybe there can be more times without it in the future.... I am still writing my blog and keeping track of myself and others and I always love to hear people's results... Positive or negative!!

RosesToeses

pkeiles, Helensamia123, could you share why you chose LNT over lymph bypass surgery?  I've just recently begun reading about the different options and I'm curious!

Thanks!

Helensamia123

I went with what was recommended by my Doctor.. By Lymph by pass are you meaning the surgery that joins the lymphatics to a vein? I call this Lymphovenous anastomoses .... Some surgeons do a combination and some specialise in different surgeries.. Sometimes Liposuction is also used in combination.. So everyone's needs are different I believe..

RosesToeses

Helensamia123, thank you, that is what I was asking about.  I believe I've seen it called both things, but I've only looked at it superficially.  From the bits I've read, I'm not seeing much discussion on what would make one approach preferred in different situations.

I would so much love to see something like either option come out as a reliable cure (or cause of notable improvements) for lymphedema.

carol57

Rosestoeses, the anastomosis surgery is a bit of a puzzle, because they link lymphatic capillaries with veins, and these two elements of our anatomy have very different pressures, with the vein pushing blood through at a greater pressure than the lymphatic capillary is pumping lymph. The puzzle is why the vein doesn't 'backflow' blood into the lymphatic vessel, as the lower-pressure lymphatic vessel funnels lymph through the vein as a means of by-passing the damaged lymphatic pathway.  I heard Dr. Jay Granzow address this question in a phone conference recently (he does this surgery) and he said that in his experience the surgery works, but he didn't have an answer to how the pressure differential is addressed, nor to the question of whether the by-pass is likely to 'hold' in the long term.

You can read a detailed description of this procedure here: http://www.jvascsurg.org/article/0741-5214(88)90008-0/fulltext   This is an older study, and note that it found that individuals with secondary LE seemed to respond to the surgery better than those with primary, and that patients who got any symptomatic improvement were those who had multiple anastomoses instead of just one.  The surgeons found that most patients had improved lymphatic flow as evidenced by lymphscintigraphy (imaging of the lymphatics), but I think only 4 of 7 with secondary LE had symptom improvement, i.e. swelling reduction.  

I think there are a few newer articles but I don't have time this morning to look for them.  It's exciting that there is a lot of movement in the surgical community to work on LE solutions, and I'm very grateful for Helen and others here who are sharing their experiences.

pkeiles

Hi Rosestoeses, actually the doctor Carol mentioned, Dr. Granzow, is my doctor. And he told me that they have better success with lymph node transfer versus the anastomosis surgery (LVA). But I also believe the recommendations are different for different cases. In my case, I had only mild LE and had been experiencing the LE symptoms for less than 5 months before my LNT surgery (which was less than 1 year from my original ALN surgery). I think you basically have to rely on your doctors advice and experience with the procedures given your specific situation.

carol57

Dr. Granzow is pretty up front with the 'we just don't know' limitations of what can be known about the surgical outcomes, because of the limited number of patients/procedures to date and there not being any central reporting platform to share results. Later this year I think he may moderate a session at the National Lymphedema Network's research conference, topic being surgical solutions of course. As in any surgery, if anyone is considering a node transfer or a lymphovenous by-pass, it sure is important to ask for details of experience doing the surgery. 

Helensamia123

I think what makes these results so difficult is that everyone's LE is different and what works for one does not work for another... There is no equal ground to start from!!   As Carol says you need to ask lots of questions and feel confident for yourself... Do not expect instant results and remember that you are having major surgery... I heard from a lady recently who had a bad infection after her LNT and had to have the newly transferred tissue removed... Devastating... .. This is elective surgery and all surgery can have problems... That being said most people that I have contact with have had no problems and are happy with results so far... It is going to take years to get Doctors to combine their results if ever!!!! 

carol57

Helen, that's a wonderful observation, and isn't it true that the everyone's-different challenge is the root of so much frustration with LE in general? On another thread, one of our  members is frustrated because all her diligent self-care is not doing a thing to budge her swelling. Someone else can't find any exercise that doesn't cause a flare-up.  Sleeves and gauntlets that are supposed to work to reduce swelling actually make it worse.  This stupid condition seems to be the ultimate in trial-and-error treatment. I really do hope that someday there's a surgical answer that reliably and consistently fixes the root cause of LE, because the tried-and-true CDT treatments work on symptoms, not consistently at all, and they're not a cure.

My heart goes out to the lady who had to have her transferred tissue removed. Dashed hopes are probably harder to deal with than the physical distress from the infection and subsequent surgery.  

pkeiles

Well said Carol, the real issue is we are treating the effects versus the cause of the problem. Until someone can find a way to 100% restore the damaged lymph flow in the effected limb, we are at the mercy of exercising this "trial and error" treatment approach. These surgeries such as LNT, are an attempt to get the lymph flow working "good enough" such that we are able to eliminate swelling issue and infections as much as possible, but that's not the same as restoring the flow to 100% of its original efficiency.

Binney4

It would be even better if we could discover ways to avoid damaging the lymph system in the first place. There is finally some solid research going on at the University of Georgia that I'm hoping will give us critical information about the hard science of the lymph system and, through that, some new ideas for how to intervene to support it and prevent LE from ever happening.

Onward!
Binney

carol57

Binney, that research is very interesting but if nodes have to be removed or irradiated for cancer treatment, it's hard to imagine what the work-around might be to intervene and prevent LE. But it is encouraging to see such signs of interest in LE research, that's for sure.

RosesToeses

So much great info, thank you all for sharing it!

Maxine58

Hi all. Im headed to Charleston for my last revision next week and recon will be complete! It has been 1 year since the VLNT procedure and I am so very happy with the results. I have stopped wearing my glove and sleeve except for grocery shopping and housework. I still get a tiny bit if swelling in my trunk occasionally but have learned that a snug UA with a swell spot overnight gets things moving again. I actually feel like I have a good understanding and some control of my lymphedema! Never thought I'd feel like that! Just wanted to leave an update. I was so depressed and in pain just two years ago but today am a new version of myself. I have the women on these discussion boards to thank for getting me started on my search for facts and resources. Im so grateful. God bless you all.

hugz4u

Yes thank you so much for posing. You are paving the road for us chicken littles.

PinkHeart

Maxine, all~

Just wanted to let you all know I am celebrating my two year anniversary since my LNT lymph node transfer with great outcomes. That dreaded sleeve is only on for flying as a precaution.

Dr Kline (my SGAP breast recon microsurgeon) did my surgeries and LNT here in Charleston where I have since relocated. I have one last breast revision then celebrating with 3D tattoos done here in Charleston by Renee who trained under the fab Vinnie.

I will continue to post here every year in hopes that more BC survivors will consider LNT for our often ignored LE side effects.

Happy Holidays! 💗🍸🎄

hugz4u

Awesome PinkHeart and thanks for keeping us in your thoughts. So good to hear your experiences. Don't forget us as we learn from each other.

GrammyR

MAXINE- I wonder if your Dr Kine .ay ha e been my reco surgeon team iN tTampa bay . G.oodguy

PinkHeart

GrammyR,

Maxine didnt have Dr Richard Kline but I did for LNT and SGAP recon He is in Charleston SC.

There is another Dr Kline recon surgeon in Orlando area w MD Anderson.

ahdjdbcjdjdbkf

I have an appointment in Orlando for an assessment for VLNT. I don't have $$ for this but I am taking steps and having the assessment and hoping the universe sends me something good. I think I am able to withdraw from my 401k if it is a medical procedure. I need to do some homework. I'm seeing Dr. Richard Klein at Orlando Health.

ahdjdbcjdjdbkf

My assessment is complete. I now wait to hear Dr, Klein's recommendation and then I start working on insurance.

RachelD

I was wondering how your doing after your lymph node transfer

ahdjdbcjdjdbkf

Dr. K confirmed I'm a solid candidate for the surgery. Waiting for a date and insurance approval.

PinkHeart

Mariasnow,

Good to hear! Praying insurance is approved and you are on your way to better QOL!