LVA surgery - bypass surgery - Have you done it?
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Hi Linda,
How did your ICG go? Our you back home now? Did BCBS end up covering it?
I am scheduled for my ICG on Dec 21st and for either the LVA or Lymph vessel surgery on Dec 30th.
Also, general question... can anyone recommend a full arm elevation wedge for after the surgery?
Thanks,
Amanda
(ps I don't check this thread often enough, I will try to do better)
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Hi, Amanda,
The ICG went well - stung a bit, but nothing to worry about. The results were shocking. My lymphedema has progressed far more than I expected. I have solid predominant lymphedema, so I am not a candidate for LVA or lymph vessel transfer. He is recommending the flying squirrel liposuction, with possible lymph vessel transfer in the future. The advantage is that you get immediate results, the disadvantage is the painful recovery and one arm being smaller than the other.
It's a lot to think about.
Good luck with yours. Will you stay in Cleveland that whole time?
Linda
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Oh, that 's surprising! I'm glad it went well, though (not much pain, no complications). I haven't read much about the flying squirrel, so I'm not sure what you mean by (one arm smaller than the other). But, I guess the trade off is worth it to not have swelling.
I just got notified that it's not possible for me to do the lymph vessel transfer as it's an in patient surgery and those have been cancelled because of covid. I still think I'm going to travel for my ICG and if it looks like he'd recommend the LVA, then I'd do it.
Your situation makes me realize that until I get the ICG, I really don't know anything about my situation.
How bad is your swelling?
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My swelling isn't bad - it is just firm to the touch, not as much pitting as I used to get. The flying squirrel is basically liposuction with a skin tuck.
Good luck to you - keep me posted.
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hi Linda,
I just replied in your other thread. He says I’m stage III. but I could do the LVA but flying squirrel better.
Going to decide tomorrow.
Amanda
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Can anyone tell me when they do a bypass vs. alymph node transplant. I've just finished diagnostic testing and am going for a consult in March. I'm just wondering what determines which surgery they reccommend
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Hi Mammalou,
I'm not the most informed patient on this thread believe me, but I think that they only do LVA if you are an early stage (less than Stage 2). Also, I think that there's a trend away from doing lymph node transfer. I am seeing Dr Chen out of Cleveland. I am stage 3 (which I didn't realize). He is going to do a liposuction procedure (surgery) next week to reduce the arm volume and fibrotic tissue. He believes (without any promises) that that will allow my arm to go back to a stage 1 and then I will have the LVA. But, my arm hasn't followed any standard expectation so I'm trying to remain flexible. My goal is to not have to wear my arm sleeve all day. But, I think I'm starting to realize that even with all these surgeries, I am always going to have to take care of my arm in some fashion..... sigh. I have a pneumatic pump and lately I've been very bad at it.
Amanda
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MandaLynn - do you know what the procedure is called that you described using lyposuction to get rid of fluid and fibrotic tissue? I have active cancer and would probably told that it would come right back......... But the loss in range of motion is very depressing. I doubt if I could find the procedure here
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im curious about these procedures. I have left arm lymphedema, I think a stage 2. For the past 5 months I've been struggling with nerve pain, excruciating at times, in that arm - armpit to wrist, occasionally hand involvement. My wrist is so swollen - not lymphadema I believe, that I can't wear my compression sleeve. I've been trying to hold it steady using a flexitouch & night sleeve, but it's kind of a losing battle. Everyone I've seen - several doctors, le therapist, physical therapist says when the swelling goes down the pain will dissipate - but I just can't get it down. I wonder if this is an option for me...and does anyone know of a place that does it in coastal New England ??
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Hi BlueGirlRed,
I am not on breastcancer.org very regularly and have been busy with my surgery on March 25th. My lipo surgery was called the flying squirrel technique. It's liposuction with a skin excision. There's another thread here (Liposuction - flying squirrel) where I talk about my experience.
I believe the liposuction procedure has been around for years (the part that was new was the skin excision so your arms don't end up look like empty sacks like a "flying Squirrel").
Amanda
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amanda - I hope you are able to get the swelling down. I also experienced severe pain at night in the affected forearm even though my entire arm was swollen, and even the hand swelled up once. Ice seem to help, but not always. Never took up the offer for Rx pain killers, because the pain attacks did not happen on a regular basis and only seemed to happen at night. Swelling is way down now and I have not experienced that pain for 2 months. The lymphedema was from a new tumor (nodes had been removed on the other side). Radiation seems to have helped with the swelling, but I doubt if it killed the tumor. Hopefully it is more than a temporary reprieve. Hoping to get range-of-motion back. Hurts to exercise the the arm because of the radiation burns, especially in the axilla.
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Im so glad I happened to see this bluegirl, I don't often look at the lymphedema forum anymore. They think the swelling & pain in my arm is caused by tumors in the area & are setting me up for radiation. I really hope it works out ! It is heartening to hear that it helped with your swelling. So sorry about the radiation burns though. Have you been seeing a lymphadema therapist? Wishing you well
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I just won the appeal with my insurance company to have the LVA surgery and am working to get it scheduled. I am trying to get information on the recovery process. Can anybody share what it was like? How quickly you returned to work? How did showering/cooking/driving/knitting go? Were you wrapped 24/7 for 4 weeks? any and all information would be appreciated. Word is that my surgeon is a great surgeon, but is not a great communicator, so I'm taking everything he says with a grain of salt.
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Congratulations! My LVA was on my leg so a little different. My surgery was at the Cleveland Clinic on a Tue just over a year ago. It was wrapped when I left the hospital and I had to remove and rewrap the outer layer twice a day but not touch the 2 inner layers. I was able to walk on it immediately but was only allowed to be on it a max of 10 min per hour and had to keep it elevated the rest of the time for the 4 weeks. I was not able to shower until I returned to the clinic on Fri and Dr Chen removed the wrapping. The results were amazing in just 3 days. After he removed the wrapping I had to wrap it with the outer wrap every morning and every evening for the full 4 weeks. I also used gauze and bacitracin on the incisions until they stopped weeping under the wrap. I shower in the evening. So I would take it off and shower and then rewrap to go to bed. I did not drive until 3 weeks when I had to see the lymphedema therapist. That's when Dr Chen wanted me to see her to be measured and set up a schedule to start after having the stitches removed at 4 weeks. I worked from home (hotel) the day after surgery. Since I had to keep my leg elevated I couldn't really do that at the office, so I worked from home the entire 4 weeks until I had the stitches removed. Since I could only be on it 10 min an hour, I cooked in stages throughout the day in order to have dinner ready when my husband got home. I had very little pain. Dr Chen sent me home from the hospital with a bottle of Tylenol and Advil and instructions to alternate every 3 hours and it kept the discomfort under control. I hope I covered everything. If not, please ask. Again, congratulations! I'm very glad it's approved. Let us know when you are scheduled.
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Thank you so much for all in information! I guess I should have said that I'm having the surgery on my left arm...luckily I'm right handed. I have been able to control much of the swelling, but have had cellulitis 3 times since January, and ended up in the hospital one of those times.
I am just back to work on site after working telehealth since the beginning of the pandemic, I am so frustrated that I may have to go back to telehealth. Husband is pushing me to arrange to work from home, but I'm trying to see a way to get to my office...although I'm also hesitant about any infections and I work is a rough area in a rough situation and many of my clients are not vaccinated
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Cellulitis is no joke. I had 6 in the first year after my melanoma surgery and was very lucky to find an awesome caring infectious disease doctor who has had me on a daily antibiotic ever since to prevent them. I just stopped taking it 6 weeks ago. So I'm still crossing my fingers that they don't return. But that was one of the main reasons I had the surgery was to hopefully put an end to them. And COVID is nothing to mess with either. I had my surgery and recovery and therapy when there was no vaccine. But if you have the option to work from home, I would definitely take that option. My husband and I own our business so I'm always pushed to be here but I knew as soon as I had the surgery that trying to be at the office every day wasn't really a good idea. I made the decision that was best for me and my health. And I have to say the recovery went very well for me. I wish I had taken the time when I had the cancer surgery. You have the rest of your life to work. You only have this small window for these little vessels to heal.
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I agree about the cellulitis. My ID doctor has discussed daily antibiotics, but I don’t do so well on them, so QOL is compromised…my hope is that the surgery will reduce or eliminate the infections…and that’s what won my appeal.
I’m considering all options for work, including just retiring, but I do love what I do…although I also have many interests that I am anxious to expand in retirement…I’m glad your recovery was relatively easy. It’s so good to hear about the positives! And, again, thank you for sharing.
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How are you doing by now? Considering this surgery in Cleveland with Dr Chen. Has it been overall successful
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KaralnLA - Have you had your surgery yet?
Dtodd - Dr Chen did my surgery 14 months ago and I would call it a huge success. I am considering doing it a second time. I have some swelling around my ankle that is almost unnoticable with compression stocking daily. But he had said I should be able to go without at least 5 days a week. If I skip one day my ankle is noticably swollen. But that being said it is still hands down 400% better than prior to the surgery. Now I'm just hoping for perfect and he offered to do it a second time when I saw him in April for a follow up. At the time I thought no since I was just so happy at so much improvement. But if I could actually be cured, that would be truly awesome.
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I'll just add my story to this thread. I had the lymphovenous bypass in conjunction with a single mastectomy on Monday. The plastic surgeon was able to find and attach FOUR good channels and I'm so psyched about it. I am hopeful that this preventative step will help prevent me from ever developing lymphedema. I understand that this has become a standard at MD Anderson within the past 6 months, so there is no real historical data at this point. I also signed up to participate in a study so they will be following my progress.
Good luck to all who have access to this surgery!
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Wow that is wonderful to hear! I had four nodes removed and yup, lymphedema. Although mild at this point so there is that.
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melalymphatl, I just had my surgery a week ago…2 ties, so far they say I'm healing well. It's been relatively easy, except I find the whole thing so ANNOYING…especially since they say no knitting…I put a bunch of my favorite meals in the freezer before surgery and Husband is do everything, but having things done for me is not my strength…but I'm starting to see the end of the tunnel. I did the surgery because of recurrent infections, so I won't know for a bit if this was the solution.
just general info…I had surgery on a Wednesday and took the rest of that week off. I've been working from home since. I was hoping to go to my office on Monday, but I work in a relatively high risk job, with some (small) physical risk. It just doesn't seem like a good idea to go back if I don't feel I can defend myself if the need arises…Husband is pushing me to retire and the cancer recurrence and Covid may finally get me there, but I'm not sure.Each step comes with its own questions and challenges…
if anyone is in California and wants info on challenging an insurance denial, feel free to contact me. I had great legal help and my appeal was quick and easy (for me, at least). I'll share what I can (Husband did it all, with a little help from another lawyer in his office who went through denials when his wife had cancer)0 -
Kara--are you having to elevate your arm? Ugh this is making me crazy.
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KaralnLA - I'm glad the recovery is going well. I know it's tough letting people do things for you. I had the same issue. My husband spent a lot of the 30 days telling me to sit down. And I spent a lot of the 30 days telling him I was allowed to be on my leg 10 min per hour. But I assure you that you need to allow it to heal and not overdo. No matter how hard it is. I pray the infections don't return. I was on a daily antibiotic for 2 years prior to the surgery and 1 year after. So I have now been off for 3 mon and so far so good. But someone I met on here had the lymph vessel transplant by Dr Chen and she still had an infection about 4 mon after.
Let us know how you are doing when the stitches are removed and you can return to normal activity.
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Hello -
I'm new to this thread. I've had lymphedema since my lumpectomy/ALND in 2015. I use my flexitouch daily and also compression sleeves. My doc recently suggested that i might need liposuction as he thinks i've progressed to Stage 2. I'm going for a second opinion at the Cleveland Clinic later this month. Has anyone had the liposuction surgery? I'd be interested in hearing about the procedure, recovery, etc.
Thanks!
Barb
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I recently saw Dr. Allison Nauta at OHSU in Portland Oregon. Had the reverse mapping done. She is recommending LVA and liposuction. I've had one bout of cellulitis, in the hospital a week, and LE for 11 years. The LE was manageable with some size difference, but not easily noticeable. Since cellulitis I've developed fibrosis, it is pitting still, and I can't reduce the size more than it is now. I'm currently using the flexitouch plus, daytime and nighttime compression. I'd love to hear your stories about this surgery, if anyone has had Dr. Nauta...etc... Dr. Naura was very knowledgeable, I felt very comfortable with her. She said it will definitely reduce my risk of cellulitis and 30-40% chance of QOL improvements. Someone said their PCP said no, all of my docs, and LE PT, feel that it would definitely be worth my having it. I wondered why someone's PCP would say no.
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I just had a consult with Carolyn De La Cruz at UPMC in Pittsburgh yesterday. She thinks I am a good candidate for LVA surgery on my right arm. Does anyone have experience with her? I saw Dr Chen in Cleveland in November of 2021, but am having no luck with scheduling testing, etc. Any input and insights appreciated!
Thanks
Barb
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lindakr--did you decide to have the LVA?
Barb--I'm not familiar with that doctor, but since this procedure has been around for a while now I'm confident that there are plenty of surgeons who are proficient. Last year I had the LVA in conjunction with my mastectomy at MD Anderson in Houston. The doctor I used was the plastic surgeon who was responsible for the surgical close (aesthetic flat closure). Good luck and I hope you can hear from someone familiar with Dr. DeLaCruz.
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I've had LVA as well, at MD Anderson in conjunction with the removal of 13 lymph nodes and total mastectomy. It's only been 4 months but so far so good. I don't have lymphedema. I've had every confidence in my breast surgeon who suggested it to me and performed the procedure. In my case, I didn’t even have a plastic surgeon
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Bong and lw422 - thanks for the input! It's great they can now do the surgery before lymphedema happens.
Barb
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