I a fortunate enough to live in Mumbles near Swansea and have just benefited from LVA surgery on my left arm.
I had mild to moderate lymphodema for 14 years post breast cancer and was delighted to be offered surgery as one of 46 per year.
Five sites were chosen one turned out to be a no show “vein” but the other four all had at least three anastomoses.
Post surgery day 5 now wearing a full compression garment that’s ok not comfy but not hurting!
9 days to stitches out no driving until then
Please keep us updated. I’m sure it will be a great success - and life changing.
Hi davina ! Wonderful ! How did you find the operation ? How long did it take and did you do it at Oxford?
I’m saving to have it done
I live in an area where this operation is carried out on The NHS.
It took 3.5 hours under a local anaesthetic.
Sorry I should have added that staying still lying on my back nearly completely covered by a sterile tent was a challenge !
It was not painful felt sensations of pulling and pushing only.I was able to talk to both surgeons throughout the operation and was discharged shortly after the operation ended,
HI, I live in the US and just wanted you to know, because I would have liked to have known when I had my LVA in 2017, the results are gradual. At 3 months there was noticible improvement and I slowly reduced the amount of time I wore compression and there was no swelling return. There was very gradual reduction again at 9 months and then at 1 year the skin was thinner still more. My arm now is essentially normal. I am beyond happy. I did have the surgeyr within less than 1 year post LE diagnosis.
Thanks,I was advised that the improvement if any can take up to 3 years,I felt it was worth a shot would love to not have a “fat arm” anymore!
Hi there my 14-year old son has primary Lymphedema here in the states. We are in Virginia. Which doctor did you use and do you recommend? Did insurance cover your LVA? Thank you!
I was fortunate, my insurance covered it without a problem. LVA can only be done if there are still lymph vessels remaining that are still functioning. The surgery uses those vessels to connect to tiny blood vessels to allow them to pause the lymph out without using the normal pathway of vessels that have stoped working.
Primary LE is difficult because the lymph system is not as properly developed as it should be so there is a greater liklyhood that no healthy vessels are available to be used for the anastomoses. Some people with primary have been helped by surgery though.
In traumatic LE it is better to try the surgery sooner because the damage to the vessels is progressive so over time there are less and less vessels to be found. The rate of progression is unpredictable though so it is always worth being tested to find out where you stand.
I had my surgery in chicago with Dr.Chang. There are several surgeons on the east coast as well. I would talk to the staff at more than one and see what each says about your son because they might have differing opinions. There is a good one to check out in Los Angeles at USC, Dr Patel and also one that has a really good nurse who gives great information at the University of Iowa, Dr. Chen.
I hope your son turns out to be a candidate.
Fantastic result honey xx
Hi Davina I too live in Swansea. Who was the surgeon and which hospital was used. I have bilateral lymphedema which is attributed to a fall when I was young. It would be interesting to give details to lymphodema clinic next time I visit. Thanks
Tom Bragg a plastic surgeon operated with another whose name I didn’t get she was Irish another plastic surgeon.
I was referred by Singleton lymphodema clinic operated at Neath Port Talbot hospital.
Thanks for info Davina shall speak to Singleton lymphodema clinic at my next appointment
Thank you for Sharing your experience 🙏🤞
Hi Davina - so pleased you’ve accessed this on NHS! I am sure you will find the benefits enormous- I am sure it will be life changing! I am less lucky and live in an area that has struggled to find any support for Lymphodoema. However, I am lucky in that I found out about Oxford Lymphoedema Clinic and was able to self fund LVA for my affected left leg (post cancer treatment). I have been thrilled with the results - four years on and the swelling in my left leg is under control, where it wasn’t pre-op. I do still have to manage my leg - stockings, compression, exercises - but on the whole the difference between my legs isn’t noticeable and I can wear most clothes and shoes. I do occasionally go without compression too - which would have been unthinkable before my surgery! I do hope your results are as pleasing!
A great result for you fingers crossed for me!!
Congratulations. Im happy for you. I live in North Wales, I have Lymohoedema 15+ years ago. They wont do me a surgery. This upset me a lot.
There must be a reason not just where you live as they told me at clinic yesterday that a patient from Anglesey was operated on yesterday?
Any update Davina. Many of us would love to know
I’m hopeful that 6 months post LVA surgery I’m heading in the right direction!
At the 3 month check up the lymph had decreased slightly in my arm by 5% and that was measured by the hospital clinic on a machine.
I was due to go to the local clinic last week sadly they cancelled my appt and I’m still waiting for another I really would like to keep a close watch on my progress as I don’t get another hospital check up until October.
I’m still wearing my garment every day two scars are still clearly visible and the green dye remains!!
I promise to keep you all updated on my
progress
Thanks
Thank you Davina
Hi, I was diagnosed with secondary lymphoedema in October 2016 following breast cancer surgery.
It was gradually getting worse and my fingers were starting to get stiff with the swelling and I was losing strength in them.
I live just over the Welsh border in Herefordshire and the operation wasn't available to me on the NHS or through my private health cover.
So I bit the bullet, took the gamble, didn't replace my car and had the surgery privately at Oxford in July 2017.
The result wasn't immediate but the swelling gradually reduced and I continued to wear my sleeve and glove. Then in January 2018 I came down with proper flu and just didn't feel strong enough to put the sleeve and glove on. When I recovered I realised that the swelling was still reducing despite the lack of compression so I made the decision to leave it off. I monitored the arm very carefully but haven't worn compression since. I still have slight swelling in the back of my hand and fingers and when I get run down I get a little congestion around my upper arm and armpit but it goes quite quickly.
I think this operation should be done for us all on the NHS before the damage to the lymphatic system becomes too great. And I still don't have a new car but I have a hand that works. My scars have faded beautifully.
Follow the instructions post surgery to the letter, you will think you can do more but give everything time to heal properly.
Hi I had LVA in Oxford in October. My arm has unfortunately continued to swell and now is incredibly painful around the scar site. I also now find it too painful to wear a sleeve. Did you have any of these problems at all. Also feel like I have nerve pains in my arm. Many thanks
Thankfully I didn’t have problems post surgery after two courses of antibiotics my wound sites healed nicely.
I would ask your clinic for an appointment to talk about your concerns ASAP.I was told pre surgery that in rare cases the surgery does not work and the Lymphedema can get worse x
I agree completely with davina70, you need to contact the clinic and get advice as a matter of urgency.
Hi just wanted to ask has your arm improved? I am considering lva
Too be perfectly honest not a lot really ..I think the key to having this surgery is to have it as soon as possible after your initial lymphodema diagnosis .I think too many years had elapsed for me !
Thanks davinia. Can I ask how long after you had le did you have the surgery. And what is your volume difference now? I had heard that 85 percent of people who have the operation experience significant improve my. That is a little vague but does sound good.
My LVA was 16 years post breast cancer all of my lymph nodes were removed . Here in Uk you are monitored for three years by the surgical team during those years my arm steadily improved ..fast forward to next normal clinic hospital appt and I was going backwards ..manipulation of post surgery results who knows but I was left feeling deflated… next clinic appt October If you are paying and are not in Uk your experience may be completely different to mine !
Interesting. I am in Ireland so would have to travel to the uk for the surgery. Do you mind me asking what is your volume difference now. Also is there any chance I could reach out to you directly
I will need to e mail my hospital post op specialist on Monday to get a copy of my three year results as I can’t seem to locate my paper copy.I will get back to you next week with more info and my direct contact details.
I’ve heard back from the clinic my pre op arm was at 23% at the end of three years it was 10% they used three different ways to measure the arm the local hospital just uses one a tape measure.I’m April my local lymphodema clinic measured the excess at 15% I did query this at the time but was assured it was correct ..despite losing a stone in weight it was going up again !
Next appt with them in October if you’d like to contact me I can give you my e mail address ?
Thanks davinia I will send you a private message
After LVA? 
Lymphoedema in right arm, considering LVA surgery 
LVA Surgery with Dr. Wei Chen
