Huntleigh LymphAssist pump: Has anyone purchased one of... - LSN

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Huntleigh LymphAssist pump

sleeviejeebies profile image
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Has anyone purchased one of these and found it helpful? I've trialled the Haddenham Lymph Flow Advance and it was very effective for me but much more expensive. I will discuss with my lymphoedema therapist when I next see her but would be interested to get the views of people who've tried it. (Unfortunately Huntleigh don't offer a trial.)

Many thanks!

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lovesradio profile image
lovesradio

I haven't tried one of either brand but I think quite a few folk have, I can see a list of related posts and so I hope you get responses from a few folk that have experience of them.

sleeviejeebies profile image
sleeviejeebies in reply tolovesradio

Thank you! Yes, it looks like a few people have asked about the Lymph Assist, so it would be good to hear about experiences from anyone who went ahead and bought one. (There happens to be an "offer" on at the moment, which has piqued my interest...)

WardijaWardija profile image
WardijaWardija

Again, I have no experience of this particular bit of kit at all.But speaking as someone who was told that she, (me) had acquired Lymphodema, following a very traumatic fall, breaking my ribs, collarbone and totally shattering my shoulder joint and humours bone, which self-detached itself from the shoulder joint, this bone is currently "free-floating" !

I was diagnosed with Lymphodema by my GP and, 4 different practitioners on 4 separate occasions, under the employ of the NHS Lymphodema Clinic, in my local area.

I was told it would never go away but to wear compression garments 24/7 and manually massage it regularly. I was told by 3 of them, to forget any ideas about getting a massage type machine, as they don't make any difference - other than to your bank balance and the companies profits.

So, not to bore you with the interim period, I'll cut to the chase.

I knew something wasn't right

I ended up on anti-depressants, feeling seriously low and physically disfigured.

Call me crazy, but I wondered if I would be better off, having no arm or not being here at all . . . I lived feeling this way for 4 years.

I had no psychological support.

Through various channels, I managed to get an NHS appointment at St George's Hospital in London. This hospital is rated a centre of clinical excellence with regard to the whole spectrum of Lymphodema, and appointments are like gold dust.

I wanted to know/ if my lymph glands were damaged. As I know they can be if you get Lymphodema following having had cancer.

I was fortunate enough to be seen by Professor Mortimor (top man), who, along with his junior colleagues, fully examined the area of my Lymphodema.

He asked many questions of me.

He measured the area, poked and prodded me for quite some time and discussed with the other doctors.

Then came his diagnoses, he said "Madam, you do not have Lymphodema at all.

Who on earth told you that ?

Well, I just burst into tears from the sheer relief of hearing what he had just said.

Having spent the last 4 years in compression garments (that never really fitted) and were really uncomfortable. And laboriously "massaging" and cleaning/moisturising this damn Lymphodema, as per the therapist's instructions 🤨 I now felt like I had won the lottery.

The Professor explained, that I do have an issue with the fat cells in this area, its a bit complicated to explain, which was down to the fall itself, but, unlike Lymphodema, it could be dealt with.

The Professor said that he will contact my Orthopaedic Surgeon, and share his findings and request I have a full reverse, shoulder replacement surgery.

Following that, when my shoulder was healed, I would be given Liposuction to remove the excess fat and have the top of the arm, down to the elbow, re-contoured.

I know that I have been extremely fortunate by having been seen by the eminent Professor. He has, I feel, saved my life.

Moral of the story is 2-fold. IMO

1. Don't waste your precious money on equipment that is not clinically approved, or proven to make any tangible difference to your condition.

2. Make sure that you really do have the right diagnoses !!

If things just don't seem right to you, question everything.

Lymphodema is a damn awful condition to have, no matter how it originated.

In my case, initially I trusted the diagnosis of the "experts" why wouldn't I ?

And lived the life of someone who has Lymphodema. It was miserable.

On reflection, it seems to me that the condition of Lymphodema, is not taken very seriously by the general medical professionals overall.

If you have the misfortune to have had cancer, which has damaged the Limbic system, there seems to be some support via Oncology team.

But if you had "acquired" it, like myself, from a traumatic incident, it is not routinely picked up. Only coming to light when the patient himself, has brought it to the attention of his, or her primary GP.

My own GP, and also the first Orthopaedic Consultant I saw, both "poo-pood" the huge swelling I presented to them, and both totally dismissed it by saying "oh that's nothing, nothing to worry about, it's not going to kill you".

The joke was . . . It very nearly did.

I rest my case.

Thanks for reading 🙏🙏🙏

I'm staying on the site to provide support to anyone who needs it. X

sleeviejeebies profile image
sleeviejeebies in reply toWardijaWardija

Hello WardijaWardija,

I'm sorry to hear about your experience. (I remember reading some of your previous posts.) It sounds like you've had a terrible ordeal, but I suppose it must be a relief to know that you don't actually have lymphoedema. I definitely do - it developed straight away after extensive cancer surgery. It's interesting that you were told not to waste your money on compression pumps. I've found that all the physical means of managing lymphoedema do help me (but are all expensive and/or time consuming, and none of them keeps it at bay permanently, of course). I've trialled a Haddenham pump and it was very effective, so really I'm just trying to see whether I can get away with buying something "cheaper". I suspect the Huntleigh (home) one works on a very similar principle to the Haddenham machine but is just stripped down/simpler, for home use.

Good luck with the next stage in your journey, which hopefully will finally be the path to recovery! I hope you don't have to wait too long for your surgery. x

WardijaWardija profile image
WardijaWardija in reply tosleeviejeebies

Hi. Lovely to hear from you.I'm seeing the Orthopaedic surgeon on 2nd July, fingers crossed, he's still happy to do it, 4 years on.

It sounds like a minefield with all these machines, but I guess if patients feel they are beneficial for them, so be it.

It's whatever gets you through the night, right . . .

Just wish patients could "try before they buy". Given the prices, its a lot to put your trust and money in.

I hope the one you choose brings you the relief and results you seek.

Take care of yourself 🙏🙏 X

sleeviejeebies profile image
sleeviejeebies in reply toWardijaWardija

Thank you! And good luck with your appointment. Wishing you all the best. x

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