LVA surgery - bypass surgery - Have you done it?
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Thanks dejaboo. Olivia that is very encouraging. Thank you. I hope you are right. My forearm looks sooooo much better. I was having maj pitting. That's almost totally gone & forearm looks only slightly bigger than nonaffected. I think upper arm may be a bit better. It's hard to tell. Honestly if this is the only improvement & it stays this way then it would be worth it. But id like improvement in upper arm as well. I'm babying my arm. It's elevated constantly per docs instructions. I have a f/u tomorrow. The dye test showed 3 additional sites but when he actually made incision on the sites he couldn't find anything there. So even if I would've done that test preop it would've still shown those sites & looked like a had several potential sites.....4 total. I'm trying to keep positive. I appreciate so much the encouragement. I'm stuck in the house & feeling down and really need it right now.
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Ok. I wanted to update. I am ecstatic. My arm is prob 70-80% better at this point. My f/u was great. My upper arm is getting better too. I'll try to post pics soon. I sure hope this continues & is long lasting. My skin on my arm is all wrinkly since its been stretched but he says that it will tighten/retract over time. I'm doing f/u PT visit at four weeks & I'll see how measurements go. hope everyone else it good.
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That is great news! Congrats!!
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Hi. Thanks Mcgis! Just want to give an insurance update. I rec'd letter 2 days before surg that said approved then 3d after surgery rec'd ANOTHER letter that said appeal denied. Made a call when I rec'd second letter & today rec'd a letter saying it was approved. So not sure if all the work I did helped or it was just a screw up by bcbs. For anyone who is appealing--All I did was write a letter about how LE affects me & then printed up 2 MDA studies & a few from koshima, campisi, & granzow ( all online). Then I got letters supporting the surg from my onc, surg, & original breast surg that did lumpectomy & ALND. Also all my PT, massage, & receipts for compression proving I did CDT for a year. And all the notes showing my condition worsened. Just a disclaimer: I had such drastic almost immediate results I may be over estimating. I won't really know til I see PT and measure. It may be 50-60% improved. I'm not totally sure, but I can say its a major decrease in size & symptoms thus far. I doubt it will totally go away, but I think now that regular PT & maintenance will work. I feel it will b much more manageable....hopefully. Regardless I'm super happy thus far. I'm actually looking forward to bing cleared for PT to see if the usual methods will now actually work for me. I can say the diff to the naked eye is negligible now. But I'm super worried since I only have one bypass. I will say that now I've done it I think the surgery has been a success. But I believe it a personal choice. Prob one of best things I've done in a long time......I just hope it lasts. I think that is where the questions really lie. Only time will tell
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Amoc, thank you for describing the steps you took to secure approval for the surgery. Best wishes for results that last. With luck, the PT will nudge the healing along.
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Amoc - glad you are doing well. Insurance companies can be a pain, but glad you were able to get approval. Be patient and allow yourself to fully heal - as hard as that is!!
Still having issues with my fingers but everything else is great! The woman who does my sleeve fittings was amazed at the visible difference in my arm. I have not worn my stuff at all this past wknd!! Went to Great America Friday & rode roller coasters - it was awesome!! So thankful that all is well - so far so good!!
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Great to hear Amoc! Thanks for the Insurance steps too
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Spoke with Dr Chen today. Scheduled my 6mo spy test (yuk). Also told him about the issues with my hand. The spy test should show the results of the LVA but he is hoping that the bypasses by my wrist didnt fail, causing the hand swelling. We shall see - I don't honestly believe that is the case because my arm has been so good - days at a time with no compression. I have a visible wrist bone at all times & wrinkles at the joint - I thought I'd never see again. Will keep you all posted after my visit - he wanted me to come out this mon but too short of notice to get off work. Will see him 9/22 - not looking forward to the injections, but it only hurts for a minute
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Hello. Bit of update. Arm is still better than preop but I'm not really seeing much more improvement at this point. Maybe is very subtle....? Not sure. I havnt taken a pic but it's pretty much like 1st pic I posted. It had gotten a lot worse after I posted that one. It was really bad. If this is all I get I'm happy. Hopefully it will keep it from progressing. Back to PT & compression in one more week.
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anyone out there? So glad to have found you I'm having a DIEP flap 9/25 at PRMA they are doing the lymph node transfer I have the usual arm issues but worse is my trunk area it has remained the same since surgery 2010. I was so hopeful for this procedure but after reading thru all your posts I'm wondering what to do?
I've been trying to find others that have had the node transfer maybe that's my answer :-)
Lots of great info here thanks !!
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lovecat3 - I believe I did run across someone in my searches on the BC site that had the node transfer surgery.... but can't remember off the top of my head. From what I remember, it was rather successful too.
Maybe Carol would know. She has been a wealth of information for LE.
Best of luck with your surgery!!! Will be thinking about you.
Let us know what you decide and how you do!!!!
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Lovecat, "Helensamia123" has had the node transfer surgery. She posts here sometimes, but hasn't been around in several weeks. You might try sending her a PM. Her blog about her experience is here:
http://lymphnodetransplant.wordpress.com/about-me/
She very generous with information and should be able to help with any questions you have.
Be well!
Binney0 -
I have had the lymph node transfer surgery. Last year in Chicago with my reconstructive surgeon. PM me if you like with any specific questions. My results have been fantastic.Maggie
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I'm glad Binney and Maggie dropped in with their replies, because I too could recall that we'd had some sharing here on node transfer, but I was going to have to do a post-search to find out who. Maggie, it's wonderful to hear that your results have been great.
Carol
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I just had another revision with my surgeon....who also happens to be a CLT as well as has just been named on the Medical advisory board on the NLN ( i think that was the deal...will check her FB page too). When she remeasured my arm this time it is smaller than my non affected limb. She could not take her eyes off of it LOL
Maggie
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lovecat3, what prma are you going to? i see you are in carlsbad. i'm up in santa clarita soon moving to south orange county. my insurance keeps referring me to people who don't do the lva so i'm waiting to see who they send me to next (even though i've tried to tell them). good luck with your surgery. hope it goes well. where will they be taking nodes from?
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I had a f/u w my plastic surgeon. We discussed my results thus far. Most results im seeing is in wrist & hand. They are really close to normal. But since my bypass was just the one at wrist the rest of the arm, although better, is not 'as better'. I've been wrapping & have actually seen results from it (which I never did before). I have a question for those who wrap or have advice on compression in general. When i wear my sleeve it really helps my hand & wrist. When i take it off i can see that where the sleeve & gauntlet overlap looks awesome & u can clearly see where the swelling starts from that point up. The forearm & elbow will look pretty swollen. Then after about 20-30 min the swelling gets better (in that forearm up area). Ive been wrapping as much ad poss instead of the sleeve due to this. Anyone have any ideas? Maybe i need more compression in general? Wrapping will also force some fluid into my elbow which will go away when i unwrap (not as bad as with the sleeve tho) . So basically the overlap of gauntlet & sleeve really works but then above that my arm will hold fluid til the sleeve comes off. I'm seeing PT tomorrow at md Anderson but I must say I havnt had a really knowledgable lymph therapist since this started. I've learned more from these boards & my own research.
Also, i learned a couple things from my surgeon & his enterouge....they informed me the LVA is very very rarely covered by insurance as the CPT code isn't approved but the node transfer has the same CPT code as any 'free flap' (like theDIEP) and they have seen It is covered 90% of the time. Doesn't make sense to me as theLVA is so much less invasive (and I'm sure less expensive). But there you have it. Oh...also the surgeon said with the transfer the results are much better than with the LVA. Which he said surgically you would think it would be the opposite but the transfer works better & they don't know why. And after just over 100 transfers done they have recently had their first pt w lymphedema at donor site (i think i posted that before---its the same one patient fyi). So something to really really consider. The bypass carries very little risk from all my research. And the surg was a breeze. I'd still prob say overall my arm is about 50% better but this is with maintenance. Overall I'm happy. I feel now that this may actually be manageable. I don't feel as hopeless watching my arm not respond to anything I did. I had a small period that it stabilized but then it suddenly progressed at light speed the last 4-5 months.
I appreciate any advice anyone has & I hope everyone is well.
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Oh. I'm also getting a flexi-touch pump. Any comments on that???
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Amoc, I can only hazard a guess here, but I wonder if you might benefit from one of the compression garments that is adjustable. I've never seen one in person, but I think for example Biacare makes one, and I believe there are others. Perhaps you need to tweak your compression in ways that a sleeve and gauntlet don't allow? The garments I'm thinking of use velcro, and if we all think that a standard sleeve isn't much of a fashion statement, well...these things would be a tough sell to wear on a night out. Still--for times when you're not out and about, I wonder if there's some benefit for you.
The insurance coverage details are pretty fascinating. I think that the pace of adopting surgical solutions has really taken off lately and we're going to see more attention paid to the insurance question. Thanks so much for sharing that information, and good luck in your continued work toward getting 'your' arm back!
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Thanks carol! What a good idea. I'm lucky as in my day job I wear scrubs & I have found if I wear a surgical gown (the ones the surgeons wear when they scrub in) you can't tell my arm is wrapped (cuz they are ginormous). We wear them alot in the OR to keep warm. So i could poss hide that easily at work (where i spend most of mytime). I'm going to google those now. And I'm going to ask to be remeasured tomorrow for possibly a custom made sleeve. Maybe I can use the reg sleeve in my 'off hours'. I went out with friends Friday & didn't wear any compression. When I got home I wrapped. So I did 'get away with it'. Which was so nice. I'm hoping if I'm aggressive now in the future I can 'get away' with more.
I have learned in my years in medicine that it's ALL about the CPT code. If its billable it's billable. So crazy they would pay for me to have a double mastectomy w/a diep AND lymph node transfer, but not the LVA...which is prob 1/4 the cost& less chance for complications which could lead to even more costs. Regardless if it worked or not. I did a 6 hr anesthetic today to reverse a vasectomy that insurance paid for that may or may not work. I totally support that its covered; i just dont like all the double standards. Dont even get me started on the penile implants i see everyday (u dont wanna know). I get very frustrated w these things. Im involved w surgeries everyday i feel are just as important as our lymph surgeries. Insurance is a racket. Just a few years ago Medicare would pay for inpatient surg & not out patient. So all the surgeons admitted all the surgical pts w Medicare. How much sense does that make? They paid for the more expensive/unnecessary admissions. That was changed but there is so much more idiotic stuff still going on that i see everyday. Phew...ok...I'll stop....I've just really seen the nasty side of healthcare with this breast cancer mess. And I get really worked up. I've paid sooooo much outa pocket for LE treatment, I cant get good LE care, & on and on and on. I really feel we are told to just get on with life & not offered much help with this.
Thanks for any advice. I truly appreciate it. Carol, u ever use the flexitouch? Or anyone else?
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Is the farrow wrap one of these adjustable sleeves?
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amoc, I am incredibly lucky to have mild LE and haven't needed to try a pump. I think you will get some opinions from those who have used the Flexi, including some precaution that you need to give the lymph somewhere to go, so there is still some manual aspect to pump use. That makes it time consuming, but many women find that it works well for them.
Insurance and Medicare coverage policy for all things LE is such a contradiction of common sense. I'll never understand it.
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Thanks carol. I def know I need to do MLD before the pump (just from my research). Im feeling I'm back in that'mild category now. I hope it stays that way. I really didn't get much guidance for after care. But i've researched only own that it seems if post LVA the pt using aggressive compression & masssage the results are much better. I've also PMd w some women on here who've had the surg & they've been kind enough to share their post op instructions. I've been reading & I think the adjustable compression coud very well be the answer. I'm going to pursue this...get remeasured tomorrow, etc. and see how I can order this. Thanks for the suggestion....very very helpful.
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Amoc, yes, Farrow is one. Circaid Juxtafit is another. I use the Juxtafit with a custom Gottfried glove when I'm having trouble with a flare and my custom day garments are not enough. I find it bulkier than regular day garments but definitely manageable. For me it's not quite as effective as wrapping but more effective than the day garments alone. I also use a Circaid Juxtafit for my lower leg LE and it's wonderful for that, comfortable and the added bulkiness doesn't interfere with leg movement. The inelastic Velcro garments also make good night garments, so they're versatile.
I have a Flexi--it's delicious, and it certainly is effective for me. But it's cumbersome and its cycle is at least an hour, which pins you down to one spot for that time. With my responsibilities I find that often undoable, so I reserve it for bad flares, which it's good at fixing. "Kicks" here swears by it and uses it as part of her daily routine, so you might want to PM her. I've found the Flexi folks to be helpful and easy to work with. Since developing LE in my right lower leg I'm finding it trickier to use the Flexi, since I don't want to send lymph fluid down to my groin area. It's workable, but a bit frustrating. I think for the same reason I wouldn't recommend it for women who have had node transfers from the groin.
If you haven't tried custom garments, that would definitely be worth a try. Be sure to order both sleeve and glove from the same company, as they can then take into account the double compression where the garments meet.
I'm sending you a PM with further information.
Hugs, and looking forward to hearing what you come up with!
Binney0 -
Amoc1973: I am considering the LVA or node transfer when I have my reconstruction next year....I am also at MDA and have a flex touch. I love it and use it every night. I clear the nodes in the neck and under right arm then let the pump do the rest. I had them add extra time to my hand section since that is my trouble spot so with my manual node clearing and the extra time it takes me a total of 66 minutes for the whole thing. It's so relaxing that I do it right before bed and usually fall asleep before it's done! Would love to know who your therapist is at MDA I have found some really good ones. I just ordered a custom one piece glove/sleeve. I'm actually excited for it to come in! Good luck to you!
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thanks so much Binney! Very very helpful. I went to PT at MDA & they remeasured me as I was telling them my prob w the sleeve. I ordered an non custom one at this point til we see my measuremts plateau. I didn't wanna order now & my numbers go down further leading to another one not fitting well.
Alycallie. I'm awful w names. I can't remeber but I know they have a lot of PT that are LE therapist at MDA. The flexitouch should b coming soon. Good news is that yesterday we measured & my wrist is down 1cm, forearm 1.3cm & elbow 2cm!!! So I was pretty happy. I know they surgeons wNt to make sure u do max conservative therapy before doing any surgical intervention. My surg said no until all the sudden mine started really progressing at lightening speed & wouldn't respond to therapy. The surg was a breeze & I woulddo it again in a heart beat. The node transfer....well not so sure is risk that. But I prob would if this LVA wasn't helping. I've set up MLD 2x a week for the next month & I'm wearing compression, wrapping, etc. We ordered something like a farrow yesterday but diff brand as MDA doesn't use farro. Feel free to PM me or ask questions anytime. I'll keep y'all updated on all my issues
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I have a bio compression pump. I usually use it every other night for 30 minutes unless I feel like I need it more. I'm not really sure that it helps me ALL that much. I'm experimenting right now with not using it and only wearing my Jovi Pack at bed or not using it and not wearing my Jovi Pack. I've noticed I'm actually doing better with not using it. I like having it though. I'm not familiar with the Flexi-Touch.
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I had the bio pump as well. It didn't do anything for me. It's my understanding that the flexi touch pressure is very low around 5mmhg...more like MLD. The bio pump is usually set from 30mmhg to 40mmhg. Everything I've read shows the flexi is better than the regular pumps like the biomed ones. Also the flexi starts at groin (I think) then works its way up as does MLD. It's actually part of the standard of care at MD Anderson....they don't endorse other type pumps. But whatever works
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Amoc - glad to hear you are doing good. Hard to figure out what is the best to keep this stuff under control. I really like my custom glove & sleeve. Huge improvement! I've never used a pump but may ask at my follow up appt in a few weeks. Thought I'd post a current pic, so hard to put it in perspective, being right handed and usually unable to sit still, my right arm will ways be bigger. But it is so much better. Hope we can figure out what happend to my hand in a few wks, but I am so grateful the heaviness is gone!
Glad to see there are some new people joining us too! Please keep in touch!
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hey there msgumbas! Thanks for the pic & glad u r doing so well. Ur arm looks fab. So glad it's still doing better. That gives me encouragement. Mine is also sooo much better than preop. Altho, I don't know what to do w this compression issue. I got my new sleeve & gauntlet yesterday& this one also makes my swelling worse above the wrist. I don't get it. I've had this issue since the beginning of all this lymph crap. Seems I really respond back-asswards to compression. I'm hoping the flexitouch will help. I hope everyone is still well. I did my first yoga class today. Man was it hard. I'm so out of shape
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