I had Lymph node transplant surgery last weekend

I'm encouraged by these stories and I truly do seem to be doing a bit better overall right now with my arm. I hoping this trend continues. It has been 6 months since my VLNT surgery now.

Aussie - that was a funny story... except where you broke your teeth! Yikes! Glad you are doing better!

Okay, this will be short and sweet because it literally hurts my brain to type one handed with my non dominant hand! For short, I am:

1. Out of the hospital resting at a friend's on Long Island

2. Have a mild infection at the recipient site, which the doctor thankfully changed my antibiotics for (the other one just doesn't sit well with me and made my back break out!). Now keeping a close eye on it in case i need to go in for IV antibiotics

3. My arm is already softer at both the triceps area and the wrist and even though it is still swollen and too soon to know about the success of the surgery, hand is also smaller. it is important to note that I have also had my arm elevated the past week, so these results can also be from that.

4. I am only allowed to lightly wrap my hand and fingers at this point in time

5. Pain is being controlled well with Tylenol during the day and oxycodone occasionally at night ------ but mostly for sleeping.

That is about it! Thank you for your positive energy!

Thanks for the update Nordy!

I hope the infection is improving....And that when you get to put your arm down...The swelling stays at bay

Story on CBS News in NY about doing lymph node transplant after mastectomies and lymph node removal; one stop shopping!...also a very positive outlook on post-surgical transplant...very hopeful....

Here is an update this morning!

1. Infection is much better with change in antibiotics. No redness at surgical site at all.

2. Drain in forearm was removed on Friday. The drain site is currently still oozing blood, and i am a little concerned since the flap area is also slightly purple, although it is still has good temp to touch. Hubby thinks it is bruising from drain removal and blood accumulation.

3. Keeping my arm elevated while walking around without any kind of support is exhausting. Hence, i have been doing a lot of sitting with my arm elevated.

4. This week I have learned to get dressed, go to the bathroom, button pants, blow dry and flat iron my hair all with my non-dominant hand.

5. People will part the sea for you walking around with a pillow under your arm in Manhattan, but heaven forbid anyone look up from their phone long enough to offer you a seat on the train or subway.

And that is it for now. I am about to put a call out to the doctor's office in regard to the oozing!

Nordy, you have lots of women 'out here' whose fingers are also crossed on your behalf. Your best efforts are extraordinary, and knowing you're so focused on your care, the odds are surely in your favor.

Thanks for the update, and I hope you get to wing your way home soon.

I know that many women are monitoring this thread as they mull over whether to consider one of the surgical LE treatments. At the recent World Congress of Lymphology, there were many presentations and discussions of the surgical techniques in use. I was stunned at the many differences in approach currently being used, and on the surgeons' wide differences of opinion on the best surgical practices. Some of them had trouble hiding their disdain for their colleagues' methods, even.

I took notes at the conference and this morning (finally!) finished spiffing them up to share. If you want to see what I captured from the presentations, here's a link to my dropbox file:

https://www.dropbox.com/s/l3ymqvawn3n6edh/Carol%27...

I have sooooo much respect for everyone in our LE forum who has had the surgery or is considering doing it, as I can tell that nobody is taking that approach lightly. I have to say that after seeing the surgeons' presentations at the WCOL, I was left feeling that it's more of a buyer-beware world of LE surgery than any of us would wish, complicating the very notion of choosing a surgeon and a procedure, and then making the tough decision of whether to go forward.

If you look at my notes, you'll see that I have expressed my worries that there's not enough collaboration going on to lead us to consensus best practices. I guess in the end, I was encouraged, but very wary. My LE is nowhere advanced enough to make me consider surgery, but of course I cannot rule out a downhill slide in my future. Hats off to all of you who have made the decision to give it a try, and honestly I think the information being passed from patient to patient about choices and results is every bit as valuable as what the surgeons disclosed in their peer-to-peer forum. Maybe more so. I'm sharing my notes in the spirit of more information means better decisions, so even if you disagree with my interpretations, I hope those considering surgery will find value in the many surgeons' presentation details I was able to summarize in my notes.

I too, had a LNT with Dr. Massey in Charleston, SC on August 25th. It is much too early to say it has been effective but my arm measurements have decreased. Whether this will be permanent, who knows. I had the surgery due to recurrent cellulitis/sepsis/infection. Time will tell. I don't expect a miracle here but hopefully it will decrease the incidents of infection!

Nordy, keep us posted! Katiejane

Thank you Carol

Nordy, thanks for the detailed update. For some reason, I imagined the surgery would be a lot easier, and wouldn't constitute much down time. I didn't even consider there might be drains (duh) and that they'd be in for so long. All good to know.

Thanks Maria. Well I had my appointment last night and the surgeon is very pleased with my progress so far. He did advise me to keep wearing the compression sleeve for at least another six months especially since we are coming into summer here. Since I had dermal back flow stage 3 a complete cure is unlikely for me but he did stress that if they can catch it earlier then a cure is really possible. I may be garment free in the future so I am trying to think positively😁. He also said he had attended a conference in the UK last week and a dr there had completed some research into how much pressure the lymph vessels can take during MLD and what was interesting is that they can withstand 80 mmHg and the most pressure that can be applied with the fingers/hands is only 20mmHg. He advised Maddy (my LEPT) to not be afraid to massage quite firmly towards my scars. I have another appointment in January so we will see what summer does. On the downside I have developed mild truncal LE thanks radiation😩 I must admit I am so tired of all this and feel the universe is telling me that no matter what I do to try and help myself it's pointless 

Thank you Carol! So nice to see you on here giving your sound information and support for LE patients😊

Hi Pink! Yes, I finally did it, but at the point that I really had no choice. I just had a CTA today to look at the flap and as far as they can tell, things look good. It is just lots of pretty colors and puffy still. I am also following strict instructions on not doing anything too active.... Super hard, but I fought too hard to jeopardize the final on account of doing something stupid! How are you? I hope you are continuing to do well.