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LVA surgery - bypass surgery - Have you done it?

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  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited September 2014
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    Amoc - I had a hard time too with compression. There were many days that it seemed worse wearing anything, until I got the custom fit. So much better, when I do wear them :) I've been doing really well not wearing anything for days at a time.  When I over do it, my hand & fingers swell, so I put the glove on for awhile & it gets better quick. Even did well with just the glove in the sweltering humidity in New Orleans a few weeks ago. We have been lucky here in Chicago, almost no humidity, which seems to make it flare. 

    Hope you can find the right combo! I am not looking forward to next Monday's spy test, but remind myself it only hurts for a few minutes. Very curious to see how the bypass looks now on the spy!!!

    Olivia - curious how you are doing? Hopefully all is well & you still have positive results.

  • husband88
    husband88 Member Posts: 1
    edited September 2014
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    Hello Amoc1973 and vlnrph: You both are great strong women. My wife has extreme lymphedema after having Breast Cancer surgery and radiation. Her arms are not cm different, instead inches (difference in circumference). Her hands the same. She is uncomfortable, constantly noted. It has been five years. She had a consult in Rochester, MN that recommends the microscopic surgery  .  .  .  her insurance denied. The plastic surgeon and the head of lymphedema in Rochester wrote letters with no luck. She was told to write her own 'letter.' I am trying to write one with her. I want to include images, clearly long sleeved anything is almost impossible....gloves, simple things. But the quality of life and lack of range of motion. Do you have advice.  .  .  .  just asking. Maybe I am not detailed enough, there is a time frame for her 'appeal' with insurance. I just found this blog about an hour ago. 

    --Husband since '88 :)

  • moderators
    moderators Posts: 8,287
    edited September 2014
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    Dear Husband88, glad to found BCO and welcome. Support for your wife is a wonderful thing and we hope you find the info here useful.

    You have joined a terrific group of supportive and
    knowledgeable people who can offer wisdom, information and their own
    experiences.

    While you are waiting for some responses please know
    that we are sending along warm thoughts and hugs. You may wish to search our
    main site for more information on Lymphedema Treatments.

    There is also a Topic for husbands The Husbands Corner(for family, friends, boyfriends, ect.)

    Hope this helps

    The Mods

     . 

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited September 2014
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    husband88  - if there is anything I can do to help, please let me know. I luckily had no issues with my insurance. Amoc had insurance issues for approval for her LVA. She did some great research to argue for her approval. 

    This is such a frustrating condition. I hope you can gather the info you need. Please clarify what you might need & I'm sure you  will get help here. 

  • alycallie
    alycallie Member Posts: 13
    edited September 2014
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    mjsgumbas: I am having a difficult time with compression as well. My hand is my trouble spot and it seems to do worse with compression.... frustrating! I have a custom one piece glove with sleeve ordered. I hope it works! I am really considering the LVA. The node transfer scares me....

  • Olivia82
    Olivia82 Member Posts: 22
    edited September 2014
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    mjsgumbas - not much to report, arm is staying the same size and wearing compression about 50% of the time which is all very positive.

    It hasn't actually swelled without compression since the op but I'm being very cautious about reducing it slowly. Seeing the surgeons again in November, they haven't decided if they're going to routinely do follow up dye tests on their patients yet so waiting to see if they'll do that at my next appointment. 

    Compression is tricky, sometimes not I'm convinced how much good it does! I never had a problem with my lower arm or hand until I wore it! What did help with my hand before the op was having a gauntlet with a higher class of compression than my sleeve and alternating that with the Sigvaris advance all in one. I think it's a good idea to alternate your sleeve types regularly so the same area isn't put under too much pressure. Also I found the kinesio tape brilliant for my hand.

    Keep in touch everyone, think this surgery is really gaining momentum worldwide, my therapist is going to a national conference soon and a large section of the program is being dedicated lymphoedema surgery!

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited September 2014
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    Thanks for checking in Olivia - no news is good news!!!  I agree with you on the compression... it is tricky and I do see it get worse some times.  I have recently tried just wearing the glove alone, no sleeve and I seem to fair the best that way.

    Nervous for Monday, but excited to see, hopefully, the new pathways on the spy test!!! 

    I hope they continue to see positive results from LVA and that Dr's start to pay attention sooner to the issue of LE.  I really believe the quicker the intervention, the better the results.

    Hope all are well and enjoying the last bit of summer  :(  I hate the thought of winter and snow.  I need to move someplace warm year round - LOL

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited September 2014
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    Back from my 6 mo follow up in Iowa - sorry didn't post sooner, but had to catch up at work (that's where I usually post from - ssshhh - don't tell anyone).

    Spy test didn't seem as bad as the last time - probably because it was only in the one arm this time.  Still not pleasant, but not as awful as I feared. 

    Dr Chen is very pleased with the outcome so far.  The stardust patterns I had in my tricept area is GONE!!!!!  I have linear patterns in my forearm and upper arm.  My measurements decreased at the elbow 1.4cm and at 10cm above the elbow I am down 2.6 cm (from preop measurements).  10cm below the elbow I was down .8cm and the wrist 1.1cm - he believed the measurements could have been effected because they were done after the injections, which could have caused some swelling.  My hand (which I had believed was worsening) measured identical to pre-op and 10 days post op!!!  It was our belief, that because my arm looks so much better, it's giving the appearance that the hand is so much worse, when in fact it hasn't changed!!!  I wish there was a way to have been measured prior to my mastectomy, to know what the real normal was.  Being right handed, that arm will always be larger that my left!

    Dr Chen is perplexed as to why my hand didn't fair better, but the pre op spy test, showed stardust & diffussion (worse than stardust) patterns in the hand.... now the diffussion is GONE!  He was happy to see that the disease is better, but unsure why the hand issues remain.  My case is A-typical (his words), as usually the most distal areas fair better from LVA and my case is the complete opposite!  I've never been one to follow the norm : )

    He suggested trying tighter compression in the hand (glove) and not wearing the sleeve.  We may be creating a slight back up where they overlap and he believes I will be ok losing the sleeve.  If there are any changes, I need to contact him, but otherwise we will re-spy at the 1 year mark next March.  I may consider then 1 more incision and new connections for the hand,  but we'll try the compression and see from there. 

    Dr Chen is publishing, in the next few weeks, the study (which includes my case) of LVA with what they have named the Octopus procedure.  He is also presenting this study in China in 2 weeks.  I had asked him to provide a copy of the study when it is published... I will pass it along! 

    This "style" of LVA allowed him to make far more new connections (16 in my case) - the national average of connections is 3. It is amazing the things they can do!!! 

    I am so glad I took the risk and am happy with my results!  It was awesome to see on the spy test - with my own eyes, the difference in my upper arm!  I knew I wasn't imaging things when the heaviness and hardness of that area was relieved.  I hope they continue to advance with LE treatment and can help more people in the future!!!

    He also told me there is a new clinical starting - using (I believe he said) growth hormone therapy to treat LE... I may be misspeaking because he had given us an overflow of information - but it is encouraging to see there are Dr's out there trying to help this difficult condition!!!

    Hope you all are doing well!  I getting ready for the last vacation of the year :(  heading to Florida in a week!  It's been a whirlwind the last few weeks with 1 best friend finishing her brain cancer treatment, another family friend just diagnosed with BC and starting chemo today, 1 of my mentors, who I leaned on during my diagnosis celebrate 10 years BC free and the other (diagnosed 10 mos prior to me) just find out she is now stage IV with lung mets.... this disease stinks!!!!

    Sorry for the long post - but there was lots of info to share!  Take care all!!!

  • vlnrph
    vlnrph Member Posts: 493
    edited September 2014
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    Msgumbas, never apologize for a long message! You are the trailblazer here, in more ways than one. 

    I myself was on vacation when amoc asked about FlexiTouch. It's great that the manufacturer Tactile Systems sends a demonstrator to your home, as well as a therapist to do the initial set-up. The two piece garment does work first on the groin. My arm measurements went down a full centimeter after only a 30 minute trial. I've been using it almost every day for close to a year. There was some insurance company drama in getting it paid for (they preauthorized then denied once a claim was filed!) but be persistant if you need to.

    Mr Husband88, has your wife tried a pump? 

  • Olivia82
    Olivia82 Member Posts: 22
    edited September 2014
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    mjsgumbas such fantastic news! Actual proof that LVA is working and great that our surgeons are taking such an interest in treating lymphoedema. It sounds like a good idea to switch to glove only for a bit, I think these sleeves invariably end up pushing fluid down!

  • floaton
    floaton Member Posts: 53
    edited September 2014
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    just wanted to also say thanks for sharing your experience - I'll be looking forward to reading that article.  I seriously dislike surgery :), but this has me thinking it's something I may consider.  

  • alycallie
    alycallie Member Posts: 13
    edited October 2014
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    mjsgumbas: congratulations on the great news with your follow up. I am closely monitoring your results. I would love to find out more info on that clinical trial with the growth hormone if you know how to find it and also will look forward to reading the study that Dr. Chen will be publishing! thanks for sharing and good luck

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited October 2014
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    I was going to email Dr Chen towards the end of the month to follow up on the publishing.  Will keep you all posted.

    I have not gotten a new glove with tighter compression, but have pretty much altogether stopped wearing the sleeve.  Only wearing the glove (especially while at work) and it is an amazing difference.  I must have been causing back-pressure with both overlapping at the wrist.  It isn't perfect by any means, but I have knuckles again - and some days have been really good to where I could see veins in the top of my hand.

    Had my 1st experience with cellulitis last week.  Had a raging tooth absess & ended up with cellulitis in my FACE!!!  Talk about scary!  I woke up at 2:00am last week to my whole face swollen and my right eye swollen shut.  It came on so fast... was in the ER by 2:30.  So much better now - but dentist is puzzled what caused the absess, all my teeth appear to be fine... as if everything else isn't enough - you have to have a tooth freak out!!  LOL.

    Hope all are well!!

  • Olivia82
    Olivia82 Member Posts: 22
    edited October 2014
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    Mjsgumbas: ouch! Hope you're tooth is ok?! Good news that you're hand is getting better.

    I've had my 6month LVA follow up and things are looking really good, my arm has stayed stable wearing compression 50% of the time (now 1cm bigger at the biggest point in the upper arm and lower arms are the same). I really wish i'd taken more photos/videos before the op because the differences at the bony points in my wrist and elbow plus the texture of my tissues are so much better but quite hard to quantify. I had the dye test again which showed the anastomosis working and lymph going into the vein which is very reassuring and gives me a bit more confidence to not wear my compression.

    Plan is now to reduced time in compression further and see how it goes over the next few months! 

    Hope you're all keeping well x x x

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited November 2014
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    Hello all!!  Still sleeve free - over 3 weeks and loving it!  I was afraid I may have pushed it a little this weekend with doing some yard work and cleaning up the garden and flower beds without the sleeve, but all good! 

    Not fond of this time of year... everything looks so bare and blah. Boy is it cold up here already too!!!  I prefer summer!!!! Happy

    Hope all are doing well!  Olivia glad to hear your progress is positive!  Hope it continues for you!!!

  • Mamacath
    Mamacath Member Posts: 14
    edited November 2014
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    Hello All-

    I just had LV bypass on Friday. All is good and my arm is feeling lighter already. Question: did you guys use your arm very much post op? I am worried about the delicate balance between keeping it still for healing vs moving it to allow for lymph flow. Fingers crossed that this works!

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited November 2014
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    Hi Mamacath! The first few days I used my arm minimally - brush teeth & hair. But after about 3-4 days I resumed using it at work to type and write. Did not lift anything heavy for several weeks (not even milk) but after about 4-6 weeks I was totally back to normal. I was told to keep it elevated as much as possible for the first 4-6 weeks also.

    Now 9 months later I still try to be conscious to not lift in excess with that arm.

    Hoping you see positive results!! Patience is key - I am surprised at how much better I feel and notice subltle changes for the better every day.

    Curious where you had your surgery and how many connections you had? Wishing you all the best!!!

    Thanks for sharing too!!!!

  • Olivia82
    Olivia82 Member Posts: 22
    edited November 2014
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    Hi Mamacath! I took it VERY easy for the first 2 weeks, then used it but avoiding lifting anything remotely heavy for another 2. I didn't drive for 4 weeks and went back to the gym after 6weeks.

    Hope that helps! All surgeons seem to be a bit different. I found it tricky to make myself not do things because I felt so well after the surgery and didn't have any pain.

    My arm is still doing really well, I would say I'm out of compression 75% of the time with no swelling.

    Wishing you well and good healing!

  • Mamacath
    Mamacath Member Posts: 14
    edited November 2014
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    Thanks guys! it is good to know your experience. I am keeping usage to a minimum until I see my doc again on Thursday. I agree with you Olivia, it is hard not to use it due to the lack of pain! Thankful for that though! To answer your question, mjsgumbas, I had my surgery at U of Chicago with Dr Chang. Good experience so far. I see you are from Chicago too. I grew up in Beverly. (south side :0)

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited November 2014
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    Mamacath - glad you are having minimal pain and so far so good! And yes it is hard to not use your arm normally when it feels ok. Fellow south sider... I am not far west of Beverly - lived here my whole life! Would love to escape on days like today when it's sssssoooo dang cold!!! :)

    Wishing you continued success and happy healing!!!

    Olivia - that's great that you've gotten to 75% out of compression. I don't wear my sleeve at all anymore and it is awesome. I do have some days when I overdo it that I could probably stand to wear it, but a little elevation and it bounces right back. Just wearing the glove to keep the hand under control and it is much better without the double compression at the wrist.

  • Olivia82
    Olivia82 Member Posts: 22
    edited November 2014
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    mjsgumbas that's great that you've managing without your sleeve, how often are you wearing your glove? My arm hasn't swelled without compression but I'm a little nervous about going too long without it so taking it slowly! I either wear the all in one sleeve/gauntlet or gauntlet on its own because the double compression always causes problems. Another big difference is I'm only doing self MLD instead of going to a LE therapist which I had to pay for privately so saving a fortune!

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited November 2014
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    Olivia - I am a creature of habit and pretty much wear my glove all the time. Especially at work - with all the typing I am afraid of a flare up. Typically at home I try to not rely on it, but as soon as I start cooking, washing dishes or any type of cleaning it starts to get puffy, so I take it off to do chores then put it back on. If I don't have anything to do (ha, that never happens) then I take it off when I get home and try to leave it off.

    I also do the MLD before bed every night, just to be sure. I was tired of paying the $30 copay every PT visit to do what I can by myself. Seems to be good so far so I'll stay with it until I see any changes.

  • pkeiles
    pkeiles Member Posts: 10
    edited November 2014
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    Hi mjsgumbas and Olivia82, I'm going to jump into the middle of this conversation if that's alright and ask you a couple of quick questions.

    My first question is did either of you talk to your surgeon about the comparison of lymph node transfer surgery versus LVA in your specific cases? I had lymph node transfer surgery done about 15 months ago and have not had great results (so far) that I can tell. Actually my arm did seem a bit better, I had been going without a sleeve during the day and just wearing a night sleeve, but still had some minimal swelling and aching. However recently I had my first cellulitis experience (not fun at all) and it seems to have made things a bit worse. I am back to wearing a sleeve much of the day, as well as my night sleeve.

    In the past I had briefly discussed LVA with my surgeon, and he said that the different procedures have different success rates depending upon the specific case. In my case, he thought that the lymph node transfer surgery would give me better results. I have actually made an appointment to talk to him regarding my current status in January (I haven't seen him in over a year).

    So I was just wondering if other procedures were discussed at all in your individual cases.

    Oh, and one other quick question. Did either of you experience a complete reduction of swelling after your surgery and if so, how quickly?

    Thanks so much for your input!!! :-)



  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited November 2014
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    pkeiles - Dr Chen did go over lymph node transfer surgery with me, but after the spy test & full evaluation he put me at stage 2 and felt LVA was a very good option for my situation. He did thoroughly explain both procedures but I trusted his opinion for LVA. He also was very specific that this procedure did not guarantee a cure, but their experience had shown a great reduction in symptoms. I was willing to try and so far am glad I did. There are days I know I should be wearing my sleeve because my arm feels "jelly like" but those days are few & far between compared to pre-op. I am still very careful with trying to avoid too much sun (but it's winter in Chicago now lol) and bug bites & such. I had facial cellulitis with a tooth infection weeks ago and no one knows if that had been exacerbated by the LE - I believe it was :( and you're right it was not fun!!!!

    I would have to say my arm and hand were amazingly at their best the morning following the surgery for the first week - both my arm & hand were perfect! Then it seemed to get worse for a few weeks and then ultimately calmed down and I saw slow progess every day. I am still diligent to keep my arm elevated for atleast a little while every day. Still have a lot of swelling in my hand (which baffles the Dr) but has gotten better without the overlapping compression. We may look into a small incision and some connections in my hand after my 1 year mark next March. Or I can choose to wear my Michael Jackson glove until I am ready for another surgery lol!

    Sorry to hear that the cellulitis set you back. It takes so long to get the infection out of your system. It stinks that you went thru the transfer surgery and your results weren't what you expected. Keep us posted on your progess, good or bad and what happens at your next appointment!!

  • Olivia82
    Olivia82 Member Posts: 22
    edited November 2014
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    My surgeon doesn't personal do lymph node transfers but we did talk about my options during my initial consults (I hadn't had recon then and they did mention that some patients have LNT with a DIEP recon).

    As I understand it they prefer LVA if possible (ie scans show suitable lymph vessels to join to the veins) because it's superficial surgery and lower risk than LNT. Hopefully it's something that will continue to develop and I hope you get some improvement after the cellulitis settles.

    I think very few patients get a complete reduction in swelling and I was also told not to expect a complete cure. What I hoped for given their advice was some reduction in the swelling and to be less reliant on compression which I seem to have achieved (touch wood!) it takes about 6 months to see full affects, but the softness and pain relief in my arm was immediate.

    Before the LVA I was wearing sleeve + gauntlet all waking hours (nothing at night) and having MLD every 2-4 weeks. Now I just do self massage and wear compression around 25% of the time- typing, long drives, gym etc

    Hope that helps!

  • pkeiles
    pkeiles Member Posts: 10
    edited November 2014
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    Thanks so much mjsgumbas & Olivia82 for your detailed experiences. I know I can't expect a complete cure, but I think it would be easier to know what is realistic and what is not if there was a way to compare results with other similar patients. That's why I latched onto this topic page. :-)

    The reason I chose the LNT surgery was because it sounded good from everything I read and so I decided to have a DIEP procedure at the same time, I was only 9 months out from my mastectomy surgery which made sense from a timing perspective. Also my surgeon said the results tended to be better with LNT versus LVA, and it was a good choice in my case (perhaps because of the DIEP).

    I have never had the spy test done, just a lymposcintography test before my DIEP/LNT surgery. I wonder if the spy results would have revealed any additional information. In either case, I would love to have some form of testing done now just to ensure that the transferred node(s) are functioning. I look forward to my appointment in January to see what my surgeon thinks of my arms current status and possibly to discuss other options like LVA in the future. I have heard of some doctors performing both procedures on patients, staggered of course in time, with good results.

    But perhaps I am jumping the gun, I have heard that it can take up to 24 months to see the full results of LNT and I am only 15 months post-surgery. (That dumb cellulitis really threw me for a loop). Although it certainly can't hurt to check in with the surgeon, even if it does take me 2 months to get an appointment. I'll let you know what happens, fingers crossed that there is still improvement in my arm in the not too distant future. :-)


  • marciam
    marciam Member Posts: 84
    edited November 2014
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    Dear Linda; Go f or it girl! if you are pleased with results with Dr. Cheng, please email me or sent a notification. i have bad lymph edema, so much swelling and pain. I'm disabled in the right hand but the left arm has lymph edema making me very disabled all round. I wear the sleeve, and do the massage and have a good PT. All to no avail. Lucky no bad infections yet. I cannot get a rebuild due t o it. I don't want to aggravate teh darn left arm. Let m know how you are doing if you plan to get thsi proceedure.

    blessigns,

    Marcia M

  • Olivia82
    Olivia82 Member Posts: 22
    edited November 2014
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    I've heard that some surgeons are doing LVA + LNT + liposuction!!! Seems there's been a real surge in the number of patients having lymphoedema surgery in the past year so they are getting more experienced at tailoring surgery to individuals to get results. I think there is a way of seeing if the lymph nodes that were transplanted are growing, have you read this girls blog who had a LNT for leg LE?

    https://lymphnodetransplant.wordpress.com


  • pkeiles
    pkeiles Member Posts: 10
    edited November 2014
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    Yes I have been following her blog for a while now. It's great to hear how other people are progressing, I think it's good as a comparison plus it makes me feel hopeful.

    I'm definitely going to talk to my surgeon when I see him in January about LVA, he's very open minded about anything that he believes will be helpful. My only worry is the whole insurance approval nightmare. We had to go to the step following the appeal, an independent review which luckily we won, in order to get my LNT approved last time. Fingers crossed that it will be easier if we go down that route.

  • mcgis
    mcgis Member Posts: 74
    edited December 2014
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    pkeiles, who did you go through for your LNT? i was trying very hard to get my insurance to cover LVA for me but ran into a road block. i'll be changing medical groups after the holiday because we moved so i hope i can ask again if i can at least get in to meet with someone. i know there is a dr. at USC.