Hand and arm swelling

[Fit4eva]

After a mastectomy and lymph node removal in June 2014 I've developed lymphoedema in my hand and arm. I finished radio therapy at the end of nov 2014. My Lymphoedema nurse has prescribed garments which I wear religiously. She has told me that we now need to give things three months to settle down. I asked about getting some mld and she said it wouldn't be right just now.

i'm getting a little frustrated at just waiting and would prefer to be doing something proactive to try and help. It affects my fit hand and I'm concerned that it's getting more and more established as time goes on. I aleady exercise regularly, do yoga dn play golf but I'd like to know what more I could be doing?

[Lynora]

Why did she say no to MLD? Not sure why a 'settling down' period is relevant. Does the clinic offer MLD? You could try to see if it helps alleviate the situation, plus ask the therapist for guidance on self-lymphatic drainage so that you can self-manage at home. mlduk.org.uk for a list of independent therapists.

[Fit4eva in reply to Lynora]

Hi lynora,

Thanks for the weblink - I can see there i someone near me I think I'll see if I can get a second opinion.

The nurse didn't specifically say, but when I said surely it wouldn't do any harm she that yes it could. Frustrating because my insurance co were prepared to pay for 16 sessions if she would give me a referral??

[Athinakay in reply to Lynora]

Ignorance! Same as they told me no massage to breast after surgery in case cancer spreads! Dah, it is already Invasive with vascular involvement... MLD helps greatly, my breast gets hard as rock when I do not have it (settles),do not wait, it will be harder to shift the fluid.

[sleevelady]

Has she not shown you how to do simple lymphatic drainage yourself? It is important to reduce the swelling as much as possible at an early stage. The lymphoedoema support network produce a DVD showing how to do this.

[bulldogbyrne]

I had my op in 2010 but did not develop lymphoedema till 2012 and have had to wear compression sleeves since which have kept the swelling down. I put weight on so have had to lose that and I go swimming regularly I had massage and bandage therapy 2014 which helped but that was very resistrictive, I could not work for 2 weeks and had to travel a way to get it so am not convinced of the benefit !! My lower arm remains quite solid despite exercise and wearing sleeves

[Athinakay in reply to bulldogbyrne]

Sorry to hear that despite MLD you see no improvement in your swelling.

Hivamat massage by an MLD specialist works wonders on hardened tissue.

If you contact Physiopod they can recommend a specialist near you if there is one. Best wishes!

[Microsurgeon]

I would consider investigating lymphaticovenular anastomosis surgery. As you are still at an early you are potentially an ideal candidate. Various centres in the UK perform this surgery and in Europe. Lymphography would also be useful to map the disease assess its stage and monitor progression.

[LVASurgeon]

Dear Fit4eva,

I would recommend treating this early. See:

healthunlocked.com/lsn/post...

If you would like to follow me on Twitter, please search for @OxfordOLP.

There is also a lot of information available on our website olp.surgery

[Fit4eva]

Thanks ton very one for your posts - I have made an apt with an mld par tuner locally and you've encouraged me to look at other options too!!!

Feeling back in control, which is great!!!!