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LVA surgery - bypass surgery - Have you done it?

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  • HappyTrisha
    HappyTrisha Member Posts: 115
    edited July 2014
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    So here's my update.  My phone consult was scheduled for yesterday at 10 am.  It had been rescheduled from an earlier time due to a conflict in the doctor's schedule.  When they called me to reschedule, they asked me to call them back to verify the time.  They also emailed me.  I called the number but got no answer.  So I told them that in the email and said that if the doctor was definitely going to be in the office on July 3rd I'd be happy to do it, despite my typically leaving to go to the beach to be there for the 4th.  I asked them to please email me back to let me know for sure.  I never received an email.  So after about 5 days, I called and left a rather pointed message on their answering machine.  I know I sounded annoyed, because I was.  I said that I had both called and emailed and asked for verification but never received it and would appreciate hearing back from them.  I got a call back and was told the consult was definitely on.

    I called yesterday morning at 10 and after about 10 minutes on hold was told that the doctor was not in the office but that they would call his cell phone and give him my number so he could call me.

    I'm still waiting...

    sigh

  • HappyTrisha
    HappyTrisha Member Posts: 115
    edited July 2014
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    What I actually mean is that I'm done with the Dr. Sacks experiment.  GRR!

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited July 2014
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    LoopyAmoc - I think we should start our own brand "anti-LE vino" LOL 

    We may be on to something!!!! 

    Happy 4th all! We are hosting so back to work I go!!!

  • carol57
    carol57 Member Posts: 1,550
    edited July 2014
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    The woman in the websites amoc suggested is indeed amazing. Another athlete with LE is Debra Cordner Carson, who is internationally ranked in crossfit and has LE in her leg.  Both of these women show that fitness and LE do not have to be mutually exclusive, BUT--both women were exceptionally fit before their LE. Muscle overload is the foundation of strength training, and LE/strength training precautions are all about introducing the overload gradually and in small increments, because unaccustomed overload is suspected to be the LE flare trigger.  These elite athletes have trained their muscles to take overloads in huge increments (compared to me and a lot of other women with LE), so their lymphatic systems probably are not so sensitive to the stress of the power lifting. 

    I'm no athlete but over time I've worked up to 50-60 lb weights, depending on the body part I'm working with. This over two and a half years of 2X weekly workouts.  I do work with a trainer, which fortunately in my small town in rural America, is pretty inexpensive compared to big cities.  With or without a trainer, the guidelines are simple when you have LE--described here: http://stepup-speakout.org/Handout%20doc%20for%20SUSO-040113.pdf . The main benefit to working with a trainer is to assess a safe starting point and to learn good form, because the other big LE risk to weight lifting, beyond using too much weight, is injury.  Injury invites LE.  

    Final thought is that bodyweight exercises, which the crossfit athletes do plenty of, are particularly challenging from an LE management perspective. It's not possible to know how much resistance you're putting on an arm or on your torso, and changing the angle/degree of a plank or pushup changes the resistance. So it's difficult to add resistance slowly and in small increments.  I'm so admiring of these amazing athletes who happen to have LE, and they are inspiring to me, too.  But be careful about trying to mirror their 'go for it' approach, and I'd think that's especially true after LVA or other LE surgery.  LE sure makes us have to reach deep into our patience supply.

  • Amoc1973
    Amoc1973 Member Posts: 50
    edited July 2014
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    It's ok. I'm a big girl. I did crossfit before cancer, thru cancer, and now after cancer (around 4 years now). My surg gave me the ok after 6 weeks recovery from LVA if alls well, but we'll see. I'm not trying to mirror anybody. Something ive learned in the last 2 years---I'm my own personal badass. :)

  • carol57
    carol57 Member Posts: 1,550
    edited July 2014
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    amoc, crossfit-level fitness is amazing, so I'm admiring your commitment and discipline from afar. There's a cross-fit group at my local gym, and I am in awe of every one of them.  It's just a good idea to insert some cautionary notes in this forum when there's an avid go-for-it exercise discussion going on, for those who drop in and happen to land on a thread when googling about fitness with LE or after node removal, etc. (Speaking as one who did just that a few years ago, and was mighty glad after someone pointed me to the PAL study with some other documents to help apply its conclusions to my situation.)

  • Amoc1973
    Amoc1973 Member Posts: 50
    edited July 2014
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    I think mcgis mentioned the guidelines & i also suggested using them. I used them when I returned to working out. But I feel if u do it right there is nothing u can't do wether u were fit or not prior to BC. I understand some people's LE will not let them get to that level....following the guidelines will let you know if you can progress. If u can bench press and progress then you can eventually do push-ups. Also 2d a week is good for starting but you will not make much progress. As soon as someone feels ready thay should increase to 3d (undersupervision). Theres a science to it that has been explained to me as why '3' is majic number w weight training. I've been told by my LE PT & my onc there is no amt of weight I cant lift as long as I progress slowly. And I think these girls are proving that. But like I said before & mcgis did as well. Follow the guidelines. But go for it!!!! 

  • mcgis
    mcgis Member Posts: 74
    edited July 2014
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    How is everyone doing?

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited July 2014
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    mcgis - all good so far! Still dealing with a puffy hand but my arm & trunk are amazing! I guess that'll be my cross to bear & thats ok! Off on another adventure this wknd! Motorcycle ride with 7 other couples - a weekend without the kids & the mighty Mississippi! Can't wait! 

    Hope all are well and enjoying the summer! We have a friend who just had surgery for brain tumor monday - and its a bad cancer :( not curable but treatable :(  I'm pretty bummed for her & the battle she has in front of her - she is my age (almost 42) and 4 beautiful kids. She's a rock - so I hope she'll be ok. Prayers would help!! 

    Thinking of all of u! 

  • Olivia82
    Olivia82 Member Posts: 22
    edited July 2014
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    hi, just checking in to see how everyone's doing. My arm's doing well and in a process of trial and error without compression. What I have noticed is that it   does swell a bit in hot, humid weather without my sleeve but is still smaller than before my LVA. I have been leaving it off completely for weekends which has been so nice. I used to love summer but with the combination of tamoxifen and sleeves I can't wait for autumn to come! 

    Mjsgumbas- are you still wearing your sleeves? Hope you're doing well and I'm thinking of your friend and her family x x

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited July 2014
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    Olivia - Thank you for your thoughts... we visited with her yesterday and it was heartbreaking, but she has a pretty good attitude and is prepared to fight, so fingers crossed she'll fair better than the statistics.

    I too swell more with the humidity, but have been doing pretty well.  I wear both the glove & sleeve when I know I'm going to use my arm alot, but beyond that, I've been trying to give them up.  It's hard to let go of the security blanket :)  I take them all off when I come home from work after making dinner and I do better, it seems, without them! I too still have some swelling in my arm - but NOTHING like before. 

    I spoke with Dr Chen last week and he encouraged releasing the dependence on the garments and monitor what happens.  He also said, as the arm improves, the hand should follow.  Funny, the day after we spoke, poof - my hand was better!!  It's like when you take your car to the mechanic and when you get there the problem just disappears!!!! 

    Thanks for checking in!  Hope you continue to see progess!  I know it's hard to be patient, but it does seem as time is passing, all around, it's getting better.

    I'd appreciate a few extra prayers for my friend & her family!  Thank you!!!!!!!!

  • mcgis
    mcgis Member Posts: 74
    edited July 2014
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    Mary Jane and Olivia, I'm happy to hear that things are improving and moving along for you. I FINALLY got my referral to go in for a consult with the vascular surgeon. That will be in a few weeks. My hand has always been more puffy than my arm but even if this improves my arm some I'll take it.  I hope he finds that I'm a good candidate.

    Hoping for peace and minimal side effects for your friend, Mary Jane. She's very young. I do hope she responds well to her surgery and treatments.

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited July 2014
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    mcgis - thank you so much for your kind thoughts! Hope all goes well for you too !!!! Keep us posted

  • Amoc1973
    Amoc1973 Member Posts: 50
    edited August 2014
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    just wanted to post an update. My surg has been moved up to tomorrow. I also had to appeal the initial insurance decline. But after gathering letters from my onc, onc surg, & now plastic surgeon along w all my PT records and loads of studies on the present technique of LVA my appeal was approved! So surg tomorrow at 0700. Never looked forward this much to a surg. I will def let u all know how it goes. 

  • carol57
    carol57 Member Posts: 1,550
    edited August 2014
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    Amoc, I'm sending heartfelt wishes for a flawless surgery and a wonderful outcome.  When you're back to your post-surgical regular life, can you take some time to post references, and links were available, to the studies that supported your insurance appeal?

    I'm pretty cautious about the idea of a surgical solution, pending lots more surgeries with reported and studied outcomes, and my LE is mild enough that so far, it's not worth taking surgical risks.  But I have all the respect in the world for those who choose to go that route, and I'm quite grateful that you and others in this forum are willing to share your experiences. Thank you for keeping us posted, and I'll sure look forward to post-surgical reports when the surgery is behind you and you're feeling up to posting here.

    Carol

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited August 2014
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    Best of luck tomorrow Amoc!! Make sure you follow dr's orders to a T.... I think that makes a huge difference! Hope you get the results you desire!! 

    I am finally getting to go sleeveless for days in a row! It is awesome! Its weird - i almost feel naked & like I'm missing something! I did get custom sized garments which made a huge difference & has allowed me some freedoms with not having to wear them! Its been sticky humid here & I have done awesome - so hope the positives continue!

    Good luck!!! Quick healing!!

  • Amoc1973
    Amoc1973 Member Posts: 50
    edited August 2014
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    Thanks guys! I'm actually excited to have surgery tomorrow. My arm over the last 2 months has gotten worse after it had been stable. I'm so hoping I have good results. I'll be happy to post my results & answer questions. I'll let you know how it goes. Oh...I'm also getting some fat grafting to my breast at my lumpectomy site. I kinda have a dent. I thought I may as well while I'm asleep. 

  • Amoc1973
    Amoc1973 Member Posts: 50
    edited August 2014
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    Oh mjsgumbasThumbsUp.....that is friggin awesome!!!! 

  • toomuch
    toomuch Member Posts: 254
    edited August 2014
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    Amoc - Wishing you a successful surgery and a smooth recovery!!!

  • Olivia82
    Olivia82 Member Posts: 22
    edited August 2014
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    Amoc - thinking about you today and wishing you a successful surgery and recovery! 

    Mjsgumbas - I know what you mean about your sleeves, feels weird without compression! I've been a bit braver about not wearing them recently and arm is doing well. Had 4 month measurements the other day and arm has gone down again!

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited August 2014
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    That is great Olivia!!!  Little milestones - it's so hard to be patient, but it is great to see a difference!  I hope you continue to see improvements.

    I got a voicemail this morning, to schedule my 6 month follow up in September....how time flies!  But they also said it was going to be a "spy test" follow up Bawling  Not looking forward to that - lol!!!  I know it only hurts for a few minutes, but I would've almost rather not know until I got there!  I'm a weenie!!!!

    Amoc - hope everything goes well again...  looking forward to hearing from you soon!  Won't be too easy to type for a while Happy

  • mcgis
    mcgis Member Posts: 74
    edited August 2014
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    Amoc, hope you are recovering well tonight. Can't wait to hear all about it and to eventually hear about the improvements to your arm!!

    Mary Jane, what is a spy test?

    So, so far everyone is glad they have had the surgery and things have improved for them?! Sounds encouraging!!

  • vlnrph
    vlnrph Member Posts: 493
    edited August 2014
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    Congrats to amoc on successful appeal of that insurance denial! Like Carol57, I would be interested in seeing your list of studies and any "key phrases" the doctors used in their appeal letters, for future reference. Consider posting those items in a separate thread when it's convenient for you.

    Do take it easy post-op and report back whenever you're up to it.

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited August 2014
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    mcgis - the spy test is the green dye injected in the webbing between your fingers and they trace the lymphatic fluid, with an xray type machine.  Not awful for long, but not pleasant!! 

  • Amoc1973
    Amoc1973 Member Posts: 50
    edited August 2014
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    Hi to everyone. A bit of disappointing news. Apparently my arm lymphatics were so damaged the surg could only do 1 bypass (he said the goal is atleast 2) at my wrist. He said he thinks it will help but prob not my entire arm so we have to see. I will say that before the surg my arm was very tight & pitting. Its really soft today & the pitting is not as much. He said we'd be able to tell more in next 2-3 weeks. We had discussed the node transplant prior to LVA in case it didn't work. But we will c I guess. I was so sad when I found out only one bypass but I guess it's better than none at all. I'll keep u posted. Anyone else know how many bypasses they had. I'd be curious to know

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited August 2014
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    Amoc :( so sorry to hear that after all your insurance struggles. Maybe it will be a magic 1!! Did you do the spy test before surgery? I did it during consult, they injected the green dye during surgery & I have a veinal ultrasound before.

    I had 4 incisions & 16 new connections - more than what the dr even anticipated!

  • Amoc1973
    Amoc1973 Member Posts: 50
    edited August 2014
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    They didn't do the test preop because doc thought it wasn't necc since I was still in first year & do to cost and being painful. I wish I would've done the surgery earlier but hindsight is 20/20 I guess. My forearm, wrist & hand look a lot better. And my arm just feels better. I also have more of an elbow. The upper arm doesn't seem diff at this point, but it's been less than 2 days. I'm gonna try to keep positive. But I must say I was pretty upset only one bypass....but who knows, maybe it'll be 'magic' as you said. 

  • mcgis
    mcgis Member Posts: 74
    edited August 2014
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    Amoc, it sounds like just one is already an improvement. Sorry there wasn't more. Keep us posted!!

  • Olivia82
    Olivia82 Member Posts: 22
    edited August 2014
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    Amoc - sorry to hear about your surgery but stay positive and look after your arm carefully. I did read a paper a while ago from Japan saying it only takes 1 successful anastomosis to break the cycle of lymphoedema and fibrosis build up so fingers crossed :) I had 4 incisions with 7 anastomoses, I think the average is 4-6 in the upper limb, they were very pleased at the time of the op. 

    I had the dye test on my first consult, on the day of the op (where they mapped out where they would do the connections) and I think they want to do it at my 6 month review to see if there has been an improvement in lymph flow. 

    As I said stay positive and keep in mind it is a slow process. Looking back immediately after the op my elbow and hand looked better, my upper arm felt softer but it was at least a month before the measurements were any different. 

  • Dejaboo
    Dejaboo Member Posts: 761
    edited August 2014
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    Sorry to hear they were only able to do 1 bypass Amoc. 

    I am hopeful that it will still help you alot!