LVA surgery - bypass surgery - Have you done it?
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2 days post surgery. Discomfort not pain. Unveiling to change gauze:
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YIKES! Can I trust that all of the etchings will wash off???
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I imagine it will wash away- otherwise, it will make a fun conversation tattoo.
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have any of you heard of Dr sameer Patel in Philadelphia? I was referred to him by a member of another group. My left arm lymphedema drives me crazy. I hate my fat arm.
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LAUGHING OUT LOUD!!! So happy it's behind you!
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I just looked him up and he has fantastic ratings and reviews. He's been named one of America's Top Docs for the last 3 years. That's an incredibly prestigious award. All of that said, from what I was able to gather from his website, they may only be offering VLNT at his center. He has a blog article on it, but it was written in 2014. I would want to know whether he has been performing LVAs or other LE kinds of surgeries, and if so, how long and how many. I can only speak from my own experience and what was important to me, so please remember that is only my opinion. I wanted to go to an LE surgeon who was up on the latest techniques, had performed them himself for a while, and had had good results. I am in RI but I am going to Iowa for my surgery. I was going to go to Chicago but ended up decided to go with Dr. Chen. They are now performing LE microsurgery in Boston and they have some very competent doctors in NY, both of which are much closer to me. But in my opinion, Dr. Chen is one of the both pioneers and experts in the country and that's who I want performing microsurgery on me. He no longer performs VLNT because he thinks there is a possibility of causing problems in the node removal site. Yet there are many doctors still performing VLNT and many probably have good results. So I guess I'm saying that a lot of doctors are now catching on to microsurgery for LE and are going with the stand-by technique; however, the pioneers in the field are onto more progressive procedures. I hope I'm making some sense here. I know what I'm trying to say and only hope I'm getting it across. I don't want to discourage you from going to Dr. Patel, and with his pedigree, if he were performing some of the newer microsurgeries, I personally wouldn't hesitate go to him. (You might want to give a call to his office to see whether he does any of the other microsurgeries.) But I personally would hesitate to go to anyone who is only offering VLNT. Just my humble opinion.
(I'm truly interested in how others decide upon the doctors they'd go with...)
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teach6 - so glad you are doing well! Hope things progress well for you too!!! Nice to see the incisions are so narrow almost 1/2 the width since I had mine done, but the scars are so light, they are hard to see after 4 years.
My husband and I joked too that I should have had Dr. Chen's "map" tattooed
Hope everything heals quickly and you get back to your normal routine soon - and I hope you see a noticeable difference!!
Please continue to keep us posted!
Mary Jane
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Teach6, I've been emailing with Mindy and she said she just saw you recently. She really thinks the world of you!
If anyone wants a chuckle, feel free to read on. I already mentioned that I won't know what surgery I'll be having until I get to Iowa so can't make round-trip plane reservations. I may have also mentioned that if it's LVA I can stay at the Hope Lodge but if it's the flap transfer, I will have to move to a hotel since I'm going to Iowa solo (my choice) and Hope Lodge won't allow people to stay there without company if surgery is such that you can't totally take care of yourself after surgery- but of course won't know that until my spy test is done! Well I will just excerpt something from an email I sent to Dr. Chen's office as part of trying to figure out all of the logistics! "Trying to figure out all of the details in terms of travelling has crossed my eyes. On the east coast we're pretty used to having all kinds of public transportation available at our airports and city busses and trains that go everywhere. I am finding out it's not necessarily the case at some of the Iowa airports. Adding a huge burden to my travel plans is the fact that I am claustrophobic and can't fly in small airplanes. What I have found is that most of the planes flying into Cedar Rapids will be airplanes with 2 seats on each side of the aisle. For me, that's a small airplane. So my best bet is to fly an airlines that uses only 737s. Well that would be Southwest – that flies into Des Moines, not Cedar Rapids! Oh my goodness. So I've tried to figure out getting from Des Moines to Iowa city, which can be done, but then it's a matter of finding out how to get to the bus terminal and making sure I can get a flight that will get me into Des Moines in time to catch one of the two busses out to Iowa City. And oh yes, Southwest only flies to Des Moines from Boston, and Boston is an hour away from me."
Other than that, this is all going without a hitch, ha ha!
Truth stranger than fiction, but where there's a will, there's a way. And the will is definitely there.
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HappyTrisha- Was at my 1 week check up today. I told Mindy to share that I was not a serial killer in case you wanted me to help with transportation while you were in Iowa. Really, let me know your dates and I can drive you from DesMoines to Iowa City- no need for a bus ride if I am available. I may not want to use my VW bug if small spaces are a concern
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Teach6, let me just say this immediately and openly. I more than appreciate your generous offer and did the first time I saw it. I have some weird thing going on in life where I hate to put people out. I've always been that way. I would never ask you to drive me from Des Moines to Iowa City. I feel bad enough asking you to potentially drive me from the bus station in Iowa City to Hope Lodge. But if you don't mind helping me out that way once I hit Iowa City, I can't thank you enough. I have tears of gratitude in my eyes as I write this.
God bless!
Trisha
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By the way, our diagnoses and treatments are almost identical! The differences are that my prophylactic mastectomy was on the left side, and I was HER+, thus calling for Herceptin as part of my treatment.
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thx for reports girls. We’re learning here for sure
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Yes, agree with hugz4u!
I'm learning a lot and really appreciated the photo, too, teach6!
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Shout out to Delta Airlines! In finalizing my plans to go to Iowa (yes, I have actually finalized them and will be flying right into Cedar Rapids, yay!) I had occasion to be in touch with Delta Airlines to ask some questions about their policies regarding changing reservations and in the process found out that they give a 10% discount to passengers flying for medical purposes; upgrade passengers who have anxiety issues (claustrophobia being one) to Delta comfort level for no fee; and waive the fee to change reservations if it because of medical need or necessity. The best part is that I didn't have to ask the questions. The agent offered all of the information once I said I would be flying for medical reasons. In checking with both American and United, I can say that Delta has the most expansive policies with respect to helping passengers flying for medical purposes, hands down. Thank you Delta!
;
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So happy for you Trisha! We will talk soon.
3 weeks post LVA surgery and so excited to see the positive results this summer. Random thoughts:
- Being 1 handed is hard. If you have time, practice daily tasks including wrapping your lymph arm with gauze and bandages before surgery.
- Comfortable and easy on off clothes and shoes and a simple hair style.
- Go to a salon for a trim and enjoy a wash and style after surgery
- Buy a LOT of rolled gauze and tape. I rewrap daily after I shower.
- Wear your sling as much as possible to help elevate, protect and remind you not to use the arm.
- I bought a smaller sling that holds my arm up more
- Have a soft small pillow to rest your arm on while sitting and to cushion the arm while walking.
- I use stuffed animals while at school.
- Create a crazy story to tell others- the sling gets a lot of attention.
- I will be a catalog arm model with the help of my plastic surgeon.
- Get a manicure afterwards. Having nice nails will make you smile.
- I have sparkly moss green nails right now.
- I have sparkly moss green nails right now.
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This is more than a little intimidating because of course, my LE has to be in my right arm, and I am right-handed. I may be blanking out on a lot of things right now, but would you mind going over some of the fundamentals for me, such as how long we have to wrap after surgery, how long and why we are not able to use that particular arm after surgery, and how long we use the sling to keep the arm elevated? I may have made a mistake picking summer as the time to do this, but I am definitely not turning back!
(Are we allowed to use the "impaired" arm to do things like eat?) Thanks.0 -
I imagine these dates/recommendations change depending on Dr/Patient and surgery. (I had LVA)
- Wrapped with gauze and bandages after surgery- sling - pain medication as needed (I took for 48 hours)
- Shower after 3 days
- 1 week checkup (I was allowed to drive (1 handed) and return to my classroom 2nd week)
- 4-5 weeks post surgery 24/7 in sling- elevated, limited use of arm/hand
- Arm and hand can be straightened and used in daily functions, but should be elevated to chest as much as possible, unwrapped only to shower. Wrapping restricts bending of the wrist
- LVA connections-arm needs to be protected- LVA connections are right under the incisions
- 5th week stitches removed - discontinue using sling, wrapping continues to 7th week
- 5th-6th week measured for sleeve/ glove, see lymph therapist
- 7th week to 3 month check up (spy test) Wear sleeve/glove
- Use pump, have therapy, and use sleep garment if therapist sees a need
- 6 month and 1 year re-check- may decide to discintinue compression sleeve
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oh boy! I am trying to get caught up with all of your progress! What are your results so far? I have a consult with Dr. David Chang in Chicago June 7th. I have seen 2 plastic surgeons so far who both said I was a good candidate for lymph venous bypass but they had limited experience and one had trained with Chang so I didn't want to go to someone without tons of experience! Plane tickets booked..I gate mu arm
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hate my arm..not gate:-)
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help3 welcome and do let us know how it goes? You lovely brave ones are breaking the ice for us. We need to hear your experiences and are very thankful.
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6 week LVA update-
I will be switching from compression wrapping to sleeve and glove next week.
The arm feels a lot lighter, stronger and looks great. I am wearing my wedding ring again!
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teach6 - Awesome!!! Your arm looks great! So glad you are able to wear your wedding ring again! Thanks for keeping us posted! So glad you have experienced a difference!
Mary Jane
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hello all. I had a lymph node transplant and LVA bypass surgery just under a month ago.
I had some complications after surgery which resulted in an extra surgery, 3 week hospital stay and a collapsed lung. Its been traumatic to say the least.
But my arm is looking fantastic. At the moment i do not have any bandaging or wrapping on my arm. Ive been told that i need to get measured one month after surgery.
Other than that i havent really been given any after care tips.
Would appreciate hearing from anyone as to how theytreat their arm after surgery.
Happy to answer any questions about the procedure.
Thanks!
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teach6, your news is awesome! Thanks for sharing.
Dita, it sounds like your news is very good, too, although I'm sorry you've had so very much trauma. I hope all those other issues have gradually backed off. I'll be interested in what the others have to say about after-care tips, since the specialist I went to see likewise recommends no bandaging or wrapping of the arm, just rest for 2 weeks, no lifting, etc. Sounds like there are varying protocols. Thanks for sharing your story, too.
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Dita, if you don't mind me asking, where did you have your procedure done and what complications caused the need for extra surgery? Thank God it sounds like you've come out of it fine and the news about your arm is great!
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i had the surgery done in Sydney, Australia. There is a doctor here who is performing the surgery with no out of pocket expense to try and introduce into this country. She trained in the US. Oncologists are incredibly doubtful that it works. My breast surgeon told me it was witchcraft!
I had lymph nodes removed from my left side collarbone and developed a chyle leak, basically a vessel got nicked during surgery and resulted in an incredibly high drain output. I was warned it was a risk but usually a low fat diet for 3 weeks lets the vessel heal. Well six days after the operation i was still putting out nearly 2 litres of fluid and so it was unlikely to heal. So i had to have a thoracic surgeon go through my chest and clip the duct shut. This meant i had to stay in hospital for another 3 weeks with 2 drains attached. I was told it wasnt life threatening but i felt very poorly after op no. 2 and spent 4 days in icu.
Then i spent 3 weeks on opiates to manage the painful chest drain. When it finally dried up and they removed it, my lung collapsed.
So i basically had a complication at every step of the way. It was really traumatic if not life threatening.
I think its important for anyone thinking of getting the op to realise that things can go wrong and being cancer patients we've already gone through so much. I probably took it harder than someone who hadnt been in hospital before because it reminded me of that initial surgery, feeling powerless and sick!
Coming out the other side now i can honestly say im delighted with my arm.
As to why my chyle leak was so bad, the surgeon said my lymph looked dodgy anyway. She said there were more vessels than normal and they were enlarged, she thought i probably had some congenital issue, which might explain why i got lymphedema in the first place.
Mrock thanks for sharing. It does feel like there seems to be a lack of knowledge about best protocol here
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Oh my, Dita, it sounds like you really went through the wringer! So glad that you have the satisfaction of your arm looking and feeling so much better as a reward after all that!
I live in Italy and am on a waiting list for LVA. I read an article by one of the Oxford (alongside the centers in the States, perhaps the biggest European center doing LVA) doctors, and he said they don't wrap after surgery, either, whereas it seems very common in the States, and would make sense to me.
Hoping others will comment.
In the meantime, Dita, besides good wishes, I wondered if I could share the name and contact info of the Australian doctor doing LVA surgery on a FB page where I believe there is one Australian member who has secondary LE. Do you mind sharing that info?
Hugs to all
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Hi Ladies,
I have been reading a lot but just joined recently. This thread has been very interesting to me as I am considering LVA in the near future. My lymphedema didn't show up til Jan 2018, after I finished rads in mid Dec 2017 even though I had 24 nodes removed on my left during my surgery in June 2017.
Just wanted to drop by and say thank you, thank you, thank you for all the sharing here. It has been immensely helpful.
Take care!
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I’m also new to lymphedema and have read this tread with interest, my Lymphedema started almost 5 years out of treatment and i am interested in this surgery, i am based in the uk and have only been able to find out the costs of this surgery from the oxford uk clinic and was just wondering if anyone who has had it done in by Dr. Chen in Iowa had any information on the costs...thanks
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have you all had your surgery covered by insurance? My insurance denied the lva:-(
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