Lymphaticovenous anastomosis??

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pretty_em
pretty_em Member Posts: 25
edited January 2018 in Lymphedema

Hi Ladies,

I've got lymphedema for 7 years, initially was just in the upper arm, but during recent months my forearm and hand and finger also have some swelling. Not sure what triggered it maybe dancing as I recently joined dance classes. I'm kind sick of wearing the sleeve as when i put the sleeve on the upper arm is good but the hand swells up and if I don't wear it then hand swells a bit less than wearing the sleeve but then forearm and upper arm swells up. I'm having a custom made one done so hopefully that will help a bit. Anyway I came across this Lymphaticovenous anastomosis surgery online but not sure if anyone been through it and how effective it is.

any advices?

thanks

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2017

    Here is another thread that discusses both lymph node transfer and lymphatic bypass surgeries for lymphedema. I have received the workup for bypass surgery at Moffitt Cancer Center in Tampa, FL. I am a candidate but have very good control with garments and a pump, so have elected not to move forward with bypass at this time. The micro-vascular PS quoted about a 30% chance of definitive success, not good enough odds for me at this point.

    https://community.breastcancer.org/forum/64/topics/818062?page=14#idx_400

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  • pretty_em
    pretty_em Member Posts: 25
    edited December 2017

    thanks lot Special K for sharing:)

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  • Kicks
    Kicks Member Posts: 4,131
    edited December 2017

    Question - when your hand swells, are you wearing yoir glove? No mention of wearing it.

    For me, I have no issues with hand swelling (my elbow area is my problem area) but I always wear my glove.


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  • pretty_em
    pretty_em Member Posts: 25
    edited December 2017

    Hi Kicks,

    I do have the glove but i found every time i wear it make it even worse the back of my hand swells more but the fingers are better. So i tend to wear it for couple of hours and take off then put on again for another couple of hours. I'm quite frustrated about it, since I had lymphedema for 7 years, the first few years I just have swell in the upper arm but recently gone to forearm and hand. Its quite paiful when the hand swells up. I don't know what triggered it maybe due to dancing? i only pick that up in the last 3 months or so. but not so sure.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2017

    pretty_em, there are chip bags (also called Swell Spots) designed to fit into your glove on the top of your hand to control the swelling there. They are fabric, filled with foam chips, and stitched in such a way as to encourage lymph flow out of the back of your hand. Here's one:

    http://www.lymphedemaproducts.com/products/palmar-...

    Are you seeing a well-qualified lymphedema therapist to help you deal with the new areas of swelling?

    It's so discouraging to have to continue dealing with lymphedema after such a long time, but with good professional help and the right garments and aids, you'll have this all back in control again before long.

    Please keep us posted on what you discover.

    Gentle hugs,
    Binney

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  • pretty_em
    pretty_em Member Posts: 25
    edited January 2018

    hi binney4 thanks for the link this is good, let me see if they can do international delivery. I’m based in Sydney and I do see an occupational therapist regularly but so far not much help I really wish we have a Lymphedema specialist here. If anyone come across one in Sydney please let me know . Last week I also starting to have blisters between fingers and tiny fluid coming out. I think it’s lymph leaking issue. I hope this one can subside soon.

    Happy new year and hope 2018 is a smooth year for everyone.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2018

    pretty_em, here are a few trained lymphedema therapists in Sydney:

    Elizabeth Stow RMT

    Sydney, NSW, Australia

    02 9482 4877

    hornsby@health.paceclinics.com.au

    Sally McIntosh RN,RMT

    Sydney, NSW, Australia

    043 027 6040

    www.mcintoshmedical.com

    mcintoshsally@hotmail.com

    sallymcintoshmedical.com

    Sarah Foley Massa PT

    Sydney, NSW, Australia

    02 9847 5345

    sarahfoleymassa@gmail.com

    Olivia Cimadevilla Arriero MT

    Sydney, Bondi Junction, NSW, Australia

    (02) 9388 0017


    Hoping you find great help soon! Hugs,
    Binney

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited January 2018

    pretty. That sounds like caustic lymph fluid leaking. It ate my skin where it leaked. It's a constant battle to keep from leaking. Do see a therapist to gain control. A wound specialist in lymphedema specialty is a good idea as they will tell you what kind of barrier cream or meds to help with skin. Frequent bandage changes I did and wound cleaning.finger web will be difficult to manage. Seek help ASAP.

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  • pretty_em
    pretty_em Member Posts: 25
    edited January 2018

    thanks Hugz, i got an appointment going next Monday with the therapist and see if she can do anything. i was ok with arm swelling but when it gone to the hand and fingers become extremely uncomfortable.

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  • aussieched
    aussieched Member Posts: 244
    edited January 2018

    Pretty Em,

    I also live in Australia, and have ongoing issues with lymphangioma circumscriptum. If you don't have any success with your appointment next Monday, they do have a lymphadema clinic/section set up at Macquarie University Hospital at Ryde which is a research hospital. I have attended the specialists there and had surgery there only a couple of months ago. I met women there from different parts of Australia who had travelled to Sydney for lymphadema treatment.


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  • pretty_em
    pretty_em Member Posts: 25
    edited January 2018

    Hi Aussieched

    Great great let me reach out to them. Can I ask does the surgery help you? How is your arm and hand after the surgery?

    Thanks for this jnfo

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  • aussieched
    aussieched Member Posts: 244
    edited January 2018

    Hi pretty_em, I had surgery for a lymphadema related disease called lymphangioma circumscriptum which is where the lymph system has been compromised and small tumor like growths appear in the area where the skin has been affected by lymphadema, and was caused by 30 glands being removed, and the skin was further damaged by radiation.

    Sounds like your problem is different to what I have, where it would appear your main symptom/problem is the lymphadema which is causing swelling of your arm and hand which can be assisted by specially trained lymphadema therapists. I would suggest that you see the person you are booked in to see (and it may take many appointments with that person before you gain control of the swelling) and before you might start to see an improvement.

    If this treatment does not help, you could always then see a lymphadema specialist at Macquarie University hospital who may be able to provide different treatment to assist with the lymphadema.

    Ched


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  • pretty_em
    pretty_em Member Posts: 25
    edited January 2018

    hi Ched

    Yeah my issue is different to yours. Thanks for the tips and hope you are better after the surgery.


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  • mandytam87
    mandytam87 Member Posts: 3
    edited January 2018

    Hi lovelies!

    My mother is a 3-time breast cancer survivor and her lymphedema has gotten a lot worse the last year (it will swell up instantly by bending down to tie her shoelace). Has anyone had any success in completing the LVA surgery (lymph node transfer surgery) in Canada or Asia?

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