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Topic: Lymphaticovenous anastomosis??

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Dec 20, 2017 01:09PM

pretty_em wrote:

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

Dx 5/22/2010, IDC, Right, 1cm, Stage IIA, Grade 2, 2/14 nodes, ER+/PR+, HER2-
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Dec 20, 2017 01:22PM SpecialK wrote:

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

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Dec 20, 2017 01:33PM pretty_em wrote:

thanks lot Special K for sharing:)

Dx 5/22/2010, IDC, Right, 1cm, Stage IIA, Grade 2, 2/14 nodes, ER+/PR+, HER2-
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Dec 21, 2017 08:27AM Kicks wrote:

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.


Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Dec 21, 2017 01:37PM pretty_em wrote:

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.

Dx 5/22/2010, IDC, Right, 1cm, Stage IIA, Grade 2, 2/14 nodes, ER+/PR+, HER2-
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Dec 23, 2017 10:56AM - edited Dec 23, 2017 10:57AM by Binney4

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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Jan 1, 2018 01:29PM pretty_em wrote:

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.

Dx 5/22/2010, IDC, Right, 1cm, Stage IIA, Grade 2, 2/14 nodes, ER+/PR+, HER2-
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Jan 2, 2018 06:04AM Binney4 wrote:

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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Jan 4, 2018 02:11AM - edited Jan 5, 2018 10:04AM by hugz4u

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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Jan 4, 2018 05:43AM pretty_em wrote:

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.

Dx 5/22/2010, IDC, Right, 1cm, Stage IIA, Grade 2, 2/14 nodes, ER+/PR+, HER2-
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Jan 5, 2018 02:26AM aussieched wrote:

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.


Dx 5/11/2007, IDC, 2cm, Stage IIA, Grade 1, 1/30 nodes, ER+/PR+, HER2- Surgery 5/30/2007 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary; Prophylactic ovary removal Radiation Therapy 8/16/2007 Hormonal Therapy 9/28/2007 Femara (letrozole)
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Jan 5, 2018 05:31AM pretty_em wrote:

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

Dx 5/22/2010, IDC, Right, 1cm, Stage IIA, Grade 2, 2/14 nodes, ER+/PR+, HER2-
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Jan 5, 2018 06:49PM - edited Jan 5, 2018 06:51PM by aussieched

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


Dx 5/11/2007, IDC, 2cm, Stage IIA, Grade 1, 1/30 nodes, ER+/PR+, HER2- Surgery 5/30/2007 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary; Prophylactic ovary removal Radiation Therapy 8/16/2007 Hormonal Therapy 9/28/2007 Femara (letrozole)
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Jan 6, 2018 06:53AM pretty_em wrote:

hi Ched

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


Dx 5/22/2010, IDC, Right, 1cm, Stage IIA, Grade 2, 2/14 nodes, ER+/PR+, HER2-
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Jan 15, 2018 11:30AM mandytam87 wrote:

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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