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LVA surgery - bypass surgery - Have you done it?

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Comments

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2015

    Mara - I feel exactly the same way.

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2015

    sorry - it should have read Maria!

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited March 2015

    Mariasnow - wishing you the best with your approaching surgery and quick healing!!!!  Please check in and let us know how you are doing.  (((HUGS)))

    Just a little update... I just got back from a 7 day Carribean cruise, ate too much, drank too much and got a beautiful suntan.... with no sleeve or glove!!!!  My hand faired pretty well for the whole 3 days we were on different beaches.  I only wore my glove in the evening or if we did alot of walking!  Huge win!!!!  This was a big test, because my previous cruises and trips to FL aggrivated my arm and I swelled substantially.  It was wonderful to be without either most of the trip except for the glove in the evenings and both flying.

    Just scheduled the next LVA for my hand on 6/26.  Dr Chen received approval from my insurance.  He is traveling and teaching the whole month of May and I want my surgery on a Friday so I don't lose much time from work.  So excited... hope it provides similar relief received in my arm.

    Hope all are doing well!!

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2015

    Hooray! Thank you for posting!


  • kriserts
    kriserts Member Posts: 61
    edited March 2015

    Hi I have a question about this type of surgery. I asked my PS about it (I'm doing fat grafting as reconstruction). She said that there could be initial improvement, but that eventually the paths (connections to the veins, I guess) would scar down and the improvement go away.

    Has anyone heard about this issue, the scarring down? Has it been mentioned or addressed by any of the PS who've done this? Thanks!

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited March 2015

    I have not heard of this, but can ask Dr Chen if they have seen this long term.  I'll let you all know what he says.

  • Winningtoday
    Winningtoday Member Posts: 2
    edited March 2015

    I just met with dr chen yesterday and was amazed. I am a stage 2 with regards to the scale he uses for lymphedema. I am hopefully having surgery in July. I gather he based success on two things reduction of swelling and reaction of pain - and the patient may not have both. I have not been in a sleeve all the time my swelling is minimal but I have daily pain. I just need support - this feels so overwhelming right now and yet I am so grateful. The rehab journey seems the most overwhelming to me- I think all my breast cancer treatment memories are creeping up- thank tp

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited March 2015

    Winning - it is truly a very easy recovery.  The hardest part was not fully using that arm for the 1st week after surgery.  I took pain meds the 1st night home after surgery in anticipation of discomfort and had none.   I did not take any after that.  

    But with any surgery, there is apprehension, especially after all we have been thru.  I was rather nervous too before my surgery, especially since it was an 8 hour procedure.

    I am actually having a 2nd LVA on 6/26, which will be a much shorter surgery.  I had no problem committing to another procedure (for my hand) because the recovery was easy and the results I had are very encouraging. 

    I am exactly one year out today from my 1st LVA and still sleeve-less!!!!  Only wear it when I fly and long car rides.  The scars are so minimal - one of them I actually have to look for.

    Feel free to PM me if you need.  If you have any additional questions, please post.

  • carol57
    carol57 Member Posts: 1,550
    edited April 2015

    msjsgumbas, thank you for continuing to post your experiences. I'm a bit of a skeptic on the surgical solutions, but I want to keep an open mind, and I really, really appreciate the honest sharing of experiences and outcomes that we're getting here. I read each of your posts with great interest and hope you get great results from your next LVA.

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited April 2015

    Thanks Carol - you have provided alot of useful information regarding LE and have been a great support in helping with answering questions to such an unknown and unrecognized condition.

    I am by no means perfect, but the feeling of heaviness has disappeared and I have no swelling whatsoever in my wrist.  There is an occassional "puffiness" near my elbow when I really overdo things like cooking, chopping and cleaning, but too far and few between to really complain.

    Surgery isn't for everyone, but like I've said, I am glad I took the chance.  I wish my hand would have responded as well as my arm, but some things can't be explained. 

    I hope more PS or MO or surgeons recognize that some individuals may benefit from a procedure like LVA and encourge patients to look for help for LE beyond therapy.  I know some people have been turned down, because they weren't good candidates, but hopefully soon they will perfect procedures to help treat this unfortunate biproduct of BC.

  • Dejaboo
    Dejaboo Member Posts: 761
    edited April 2015

    Winningtoday I hope you get to have your surgery in July...Keep in touch & let us know.  I too am one that does not have alot of swelling.  But I sure have alot of pain...I have arm & truncal.  my truncal causes me alot more pain then my arm (usually)

    MjsGumbas that is so good to hear you are Sleeveless!   I hope your surgery for your hand in June is very succesful!

    I would love scars on my arm if it could help alot or 'fix' my LE : )

  • Winningtoday
    Winningtoday Member Posts: 2
    edited April 2015

    surgery scheduled for July 28-- here we go ladies - I am over the top excited- I will keep you posted - I already feel you love and supportHeart

  • Brenm
    Brenm Member Posts: 2
    edited May 2015

    Thank you so much for sharing your experience with LVA! I had a consultation with Dr. Chen in January to learn more about LVA. following our call, I did my own research and eagerly read your posts. They gave me hope I was on the right path and I thank you for that...it helped ease any doubts I had about LVA and I recently had the procedure done myself!

    I underwent LVA on April 21, 2015 and I'm already seeing a significant improvement in my swelling!

    I'm 30 years old, I was diagnosed with primary lymphedema 11 years ago in my right leg. It was manageable for about 8 years with little change but quickly got worse over the last few.

    I live in Florida - I traveled to Iowa to meet Dr. Chen in February where he did the ICG lymphographgy test and diagnosed me at early Stage 4. While Dr. Chen told me many doctors would not perform the surgery to people with Stage 4 or 5, I was incredibly relieved to hear he would still for me and that he felt confident it would help me. He was right. Barely two weeks since surgery and I can already see a significant decrease in swelling and bones in my foot I haven't seen in two years!

    I'm excited to get off bed rest to see how my body will respond and adjust to being on me feet again. I'm also curious to see how my thigh will respond. While my condition affects my whole leg, toes to upper thigh, Dr. Chen only made connections between my ankle and knee and said my thigh would drain in response. I've been wearing a compression garment for so long and am so used to it, that I don't mind at all if I have to continue wearing it, just as long as the swelling, heaviness and tightness stays gone.

    For those of you with doubts about the surgery - I totally get it. I heard of LVA years ago but was so told by so many doctors and therapists that I shouldn't risk worsening my condition. But my LE was quickly worsening on it's own and after speaking with Dr. Chen and reading positive stories on this forum, I knew LVA was worth the risk (which turns out is very low risk, actually).

    I HIGHLY recommend anyone with lymphedema, whether newly diagnosed, primary or secondary, to at least meet Dr. Chen for a consultation. He developed his own technique for the surgery that improves the success rate. He's also incredibly nice, patient and knowledgeable. His staff is equally as impressive. Dr. Chen spent about an hour reviewing the details of the procedure, showing me video and pictures. He was extremely responsive with any questions I had leading up to surgery and following. After the 6hr surgery, he patiently sat with my parents, walking them through the procedure and each incision he made on my leg.

    Happy to answer any questions anyone might have about my experience, and I'm sending lots of positive, healing energy and prayers to those of you about to undergo the procedure, healing from a procedure or just researching for answers and looking for some relief and hope.

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited May 2015

    Winningtoday - YAY!!!!!!!  Glad you have your surgery date and are over the top excited!!!  Keep us posted on your progress... can't wait to hear and wish you all the best!!!!

    Brenm - that's awesome you have had positive results with the LVA.  You are spot on with your description of Dr Chen - he is amazing.  Primary leg LE has to be so frustrating... I hope you follow all your instructions during recovery and that you continue to see improvement.  I know I wasn't promised for things to be perfect, but the difference is enough to make it all worth it.

    Please keep in touch and let us know your progress!!  Wishing you all the best and hope for continued success!!!

    I may have to delay the 2nd LVA for my hand Sad.  Nothing health wise or with Dr Chen... work is the issue.  I hope to not have to - but things may be busy during the whole month of July and I can't be without my primary hand for any part of the month.  Need to be able to write & type - it stinks because I was so happy to have a date and to be without this glove in the near future.

    It's no biggie if I postpone it until the fall - might actually be a good thing to not have a tan line from having to wear the glove for a few weeks - LOL   But I really want to get it done.  We just spent 5 days in crazy hot Las Vegas and other than the flights, still did not wear my sleeve at all.  I love it!

    Looking forward to seeing more positive news from both of you!!!!

  • Brenm
    Brenm Member Posts: 2
    edited May 2015

    I hope you're able to keep your surgery date and see further results. I'm still in awe of LVA and having found something that actually works to relieve symptoms after years of hearing there is nothing that can be done. Thanks again for posting your experience here. I will post a picture of my progress!

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited May 2015

    Hi all!!!  I am technologically challenged, but thought some of you may want to read about Dr. Chen's Octopus LVA, which I had done.

    I found this link https://www.thieme-connect.de/DOI/DOI?10.1055/s-0035-1548746  but maybe some of you, who are more tech savy can help with any further publication copies.

    Hope everyone is doing well!!! 

    Bremn - hope you are continuing to see positive results and feeling more relief!!!!

    Winning - your surgery date is creeping up!!!!!!! 

    It looks like I will probably have to reschedule mine.  I may be changing jobs within a week of the scheduled surgery and will really need both of my hands for several weeks, during the transition.  Plus, I wouldn't want to go thru with it and not allow the correct time for healing - wouldn't want to waste the opportunity of a successful LVA!!

  • AussieElaine
    AussieElaine Member Posts: 43
    edited June 2015

    Hi ladies, I am flying over to the UK on Thursday to the Oxford Lymphoedema Practice and will be having the ICG test to determine whether I will be a candidate for LVA surgery. I have to go the other side of the world at a substantial cost as nothing is done in Australia for LE except MLD and compression garments or bandaging. Wish me luck.

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited June 2015

    Wishing you lots of luck!!!! I hope your long distance travels work out & you can be a candidate!!!! Fingers crossed! Safe travels & keep us posted!!

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited June 2015

    AussieElaine - just curious how your travels worked out?

    I had to officially cancel my subsequent LVA that was scheduled with Dr Chen on 6/26 Bawling

    Changing jobs on 7/2 and did not want to go thru this delicate surgery and not have use of my hand or risk screwing anything up so soon after surgery.  The bigger bummer is I will have different insurance with the new job, so we will have to go thru the rigamoro of getting approval again.  The nurse is confident we will be in a good position seeing as we had approval with my previous insurance to use as an agruement.  Have not rescheduled my surgery yet until I have the new insurance info and can get approval, but I hope to not have to put it off too long.

    I was really looking forward to having it done and hoping for similar results that I had on my arm, although there are no guarantees....  If all goes well with the insurance and Dr's schedule, I hope to get back on the books before the end of the year.  With changing jobs I'll have a few months of chaos and then am planning a 2 week trip to Europe to relax after... that takes precidence to surgery LOL!!

    Hope all are well!  It would be nice to hear updates from others that had LVA recently!  Just curious to everyones status!

  • AussieElaine
    AussieElaine Member Posts: 43
    edited June 2015

    Hi ladies just wanted to update you all on my LVA. I had the ICG mapping done and yay I was an ideal candidate for the surgery. I had it done last week under local anesthetic (didn't hurt a bit!!) no need for any pain meds either. The surgery was long just under 5 hours and Mr Ramsden and Prof Furniss both operated simultaneously and between then did 16 joins. I managed to get my sleeve on later that day as they said the earlier I could get compression the better. They have advised it will take a good 6 months before I see results but are confident that I should have a good outcome. I get my sutures out next week and fly back to Australia 10 July

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited June 2015

    AussieElaine - thanks for checking in & so glad to hear you didn't travel so far for nothing!  You are a trooper having a 5 hour procedure under local anesthetic!!  Wow!!  I know Dr Chen said in Asia they perform it with only locals - we must be weenies here in the states!  LOL

    Safe travels home & hope you have continued success!!!

  • AussieElaine
    AussieElaine Member Posts: 43
    edited June 2015

    Thanks misgumbas seriously, it did not hurt one bit and it was also interesting seeing what goes on in theatre. Really, they were very gentle and it took great skill and concentration to do what they did. How many joins did you have and how long was it before you noticed any improvement? I am looking forward to having the sutures removed on Tu

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited June 2015

    I had 14 connections done and I honestly felt a difference the next day!!!  It felt like a release of pressure in the area that was most diseased very quickly after.  But realistically, the best results were about 6 months out. 

    Glad you had a good experierce - that would be really cool to watch!!!!

  • AussieElaine
    AussieElaine Member Posts: 43
    edited July 2015

    Thanks for that misgumbas. I had my sutures removed last week and all looking good except for the wound just above my elbow which took a couple more days to heal. The wound on my upper arm is barely visible. I am looking forward to getting home on Friday and getting back into my exercise routine which I am sure will help.

  • AussieElaine
    AussieElaine Member Posts: 43
    edited July 2015

    Hi all, just a quick update on my LE arm. I arrived back home Friday evening, arm was a little swollen on Saturday but had reduced by evening so no adverse effect from the long haul flight thank goodness. Went swimming today and enjoyed the exercise. Will be seeing my LEPT on Saturday, I hope she will be happy with the results of the surgery so far. Hope everyone has had a lovely weekend.

  • AussieElaine
    AussieElaine Member Posts: 43
    edited July 2015

    soooo excited, I'm just back home from seeing my LEPT and she is amazed at the results of my surgery so far. She took some baseline measurements before I left and measured today and there is already a reduction by around 3-4 mm in all except the top of my arm. Considering the long haul flight and not quite back into my exercise routine, I am feeling hopeful about my future for the first time in a long time. My LEPT is so happy for me and as I will be returning to the UK next year and will pop down to Oxford, she wants to come with me. She is so sweet, I love her.

  • Nordy
    Nordy Member Posts: 1,106
    edited July 2015

    Hooray!

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited July 2015

    Aussie - that is so great to hear!! Congrats!! I hope it continues to improve for you!!!

  • Olivia82
    Olivia82 Member Posts: 22
    edited August 2015

    Just thought I'd check in to see how everyone is doing. I've not checked this forum for a while but recovering from some more breast surgery so been catching up, it's amazing how many people are having LVA or transplants now! I'm over a year since my LVA and my arm has been very stable, I've been on a few transatlantic flights and hiking in warm weather with no adverse effects, my surgeons are very pleased with the results and now only want to see me once a year. Hope you're all seeing positive results xxx

  • HappyTrisha
    HappyTrisha Member Posts: 115
    edited August 2015

    Okay, I've been out of commission for a while just due to a grueling work schedule but I'd like to ask a quick question. Has anyone had only one LVA and gotten the result they want? I know I've read that a lot of doctors want to do it twice. Thanks. I'm getting ready to pull the trigger and will likely go with Dr. Chen in Iowa. When I get a shot I will read this entire thread again!


    :)


    Trisha

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