Compression machine for Lymphoedema.

[Applekenke172]

Morning everyone,I'm in the process of saving up to purchase a Sequential gradient compression machine. As I've been advised by the Vascular Department to buy my own as they no longer provide them on the NHS for patient rental anymore. Does anyone else have one of these machines? I'm also looking into having MLD Massage,but again this type of massage isn't available on the NHS either and is costly at £65 to £80 per hour per week. Does anyone else have this type of massage?? Is it any good and what can I expect???

[ofcourse]

MLD - a crazy price. We pay £40.00p for a qualified person. Multiply the hourly rate you're being quoted by perhaps 4 hours a day its £75,000 a year. Not a bad return for something we can do for ourselves.

Good MLD is always a huge benefit even if you have a machine - but perhaps once every 6 weeks just to keep an eye on you might be an idea if these are the costs of a qualified person.

A Compression machine is a life saver and allows us to take control of our condition. We've had ours for several years and the longer we use it the less expensive it becomes. We use the LymphaPress which is the most sophisticated machine available and is infinitely adjustable. I can't recommend it highly enough.

and the distributor is very helpful

You can expect to control the swelling and reduce it depending how long and how often you use it and on what else you do in life. For my Mother's legs which can average 18" calves we can keep at 16" using 2 to 3 times a week - if we used it more often I wonder if they'd be normal - who knows ?

Ofcourse X

[Applekenke172 in reply to ofcourse]

Ofcourse, thx you very much for your reply. The prices I wrote about are from qualified and independent MLD Massage therapists. I will definitely check out the LymphaPress machine, thx for sharing what you use.

[ofcourse in reply to Applekenke172]

Hi

Ours too - highly trained and qualified also works for NHS - LD massage in Brighton UK costs £40.00p per hour - why should we pay more ?

X

[emmabeynon503 in reply to ofcourse]

I am happy to pay up to £60 for a good MLD Massage, your costing of £70,000 a year is simplistic, they have to cover all their own costs both of room hire and training. I have had MLD massage from 5 different therapists, all brilliant. At the end you can see how visibly drained they are by the care and attention they have given my body. Most do not do more than 4 a day which makes your figure completely unrealistic. I see no problem in paying up to £60 for some one's skill and intention to do good. Although I have to admit the Lymphapress sounds brilliant.

[Applekenke172 in reply to emmabeynon503]

Thanks for your response on MLD Massage. I highlighted the cost of £65 to £80 as someone who has been recently diagnosed with Primary Lymphoedema. As i wanted to know if these prices were the norm??? As for the figure of £70,000 this didn't come from me.

[MsDEL]

I also have a compression machine and wouldn't do without it. Mine is sequential and by Sissel Uk. They are a fraction of the price of Lymphapress which was out of my budget. I have had Lymphapress treatment and to be honest can't find any difference in result.

I also have MLD from a trained practitioner, but like others only pay £45 per hour. Your practitioner does sound very expensive. I agree though, treatment is very helpful and my leg always feels softer afterwards. However, I carry out SLD every time I use my compression machine (as described on the LSN DVD). The difference is that if I need to I can do this daily ( or more when I'm having problems.

I keep a monthly appointment with the practitioner as she gives me great advice as well as the MLD.

Like you I have resorted to this because there is nothing other than compression stockings available on NHS in my area.

Wishing you well.

[Applekenke172 in reply to MsDEL]

Thx you MsDel for your response. That's the company I will be buying my Sequential gradient compression machine from. I've researched a few others,but they are out of my price range. I'm so glad to hear that someone else has the experience of using this particular device as well as experiencing similar difficulties with regards to getting more help other than compression garments. Forgive my curiosity,what area are you from and also what is SLD?

[CCT67 in reply to Applekenke172]

Hi Applekenke

SLD is Simple Lymphatic Drainage i.e. Self drainage.

I have 1-2 times weekly MLD on my legs which I pay for with my PIP benefit (previously DLA). Properly qualified MLD therapist are sourced from MLD.org.uk the cost varies depending on location I'm in Surrey and therapists generally charge £65-70 per treatment

Below are excellent instructional videos. Always start with draining your trunk, then move to your legs. Emptying the trunk first makes room for lymph from your legs drawn upwards during MLD and SLD and when you use your pump (which simulates MLD).

These videos are by an American MLD therapist - after spending endless hours pouring over hundreds of so-called SLD videos on Utube, I think she gives proper instruction, in a clear understandable manner x

blog.massagebyheather.com/l...

m.youtube.com/watch?v=UCtoV...(Not working as expected?)

m.youtube.com/watch?v=ZLyT_...(Not working as expected?)

[Applekenke172 in reply to CCT67]

Thx you CCT67 for the videos. I will definitely check them out.

[Lynora in reply to CCT67]

Correction to the MLDUK site - mlduk.org.uk

[CCT67 in reply to Lynora]

Indeed it is 😊the hazard of posting in haste

[Applekenke172 in reply to Lynora]

Thx you😊

[MsDEL in reply to Applekenke172]

I'm in Oldham, Lancashire.

SLD is simple lymphatic drainage and you can do it yourself. The Lymphodema support network have DVDs to show you how. Here is the link lymphoedema.org/index.php/s.... My MLD practitioner helped me too - we used one session where she made sure I was doing it well. Self management is the key to managing Lymphodema!

I have had a problem this year where my leg grew three sizes in stockings following hip surgery. It's taken a couple of months of determination, but I've reduced the measurements round my leg by almost 12cm using the LSN advice and my compression machine. I hope you have the same success. X

[corellc in reply to MsDEL]

How soon following surgery were you permitted to use the machine again? I am having knee replacement on Monday, and I am concerned about start date.

[MsDEL in reply to corellc]

Hi - corellc.

I used a knee high compression machine within a week of my op. My lymph team had actually suggested using it in hospital, but because of complications this didn't happen. They also recommended wearing my compression garment immediately and this was put on in theatre for me. Unfortunately the complications I mentioned meant this was removed within a few hours and I went a full week with no compression, which was not part of the plan!

I understand the key is to minimise the swelling as close to the op as possible. So if you can get any compression - garment, bandaging, or machine - I think it would help. You will have to be guided by your surgeon to the compromise between your surgery and managing your Lymphodema. It's a balancing act! Remember too, mine was a hip, not a knee.

Have you spoken to your lymph team? Can they give advice to the hospital? I mentioned the need for compression at every opportunity pre & post op. Beware that hardly anyone understands managing lymphodoema. I also recommend that you ask for home visit from your Lymphodema team immediately on discharge as you may need different sized compression garment post op. I had to wait ages for an appointment and by then my leg had gone into crisis.

Wishing you lots of luck and successful surgery next week!

[corellc in reply to MsDEL]

They gave me portable devices (knee high) for use at the hospital and for the first 2 weeks. My compression machine is thigh-high. Yes, it is a balancing act! I wrote the book, B is for Balance.

[MsDEL in reply to corellc]

Haha! I can write other books too - D is for determination whilst P is for persistence and patience! 😉

[corellc in reply to MsDEL]

My Tactile machine was $1800. US and I also could not do without it. The technician came to my home and took measurements and offered instruction on a sample product. My customized product arrived 3 weeks later. I have a set, but I only have lymphedema in one leg; thus I am set up with 2 of them.

[Z26Y25 in reply to corellc]

I have a Tactile too. When I started my calf measured 78cm but now is 58cm and holding there. I have the full leg and trunk. I use it on right leg one day and left leg the next day and then back to the right the next day and so on. I really like my machine.

[HazieC in reply to MsDEL]

Hi would you be able to send me the details of your machine please so I can look it up. Does it work by using electric pulses? Many thanks

[Applekenke172 in reply to HazieC]

Morning HazieC

I purchased my compression machine from a company called Sissel uk, they are based in High Wycombe. It took me a while to find a British company as i was directed to a lot of American companies previously.

Hope this answers your query and apologies for the late response.

[caroline-din]

could someone please explain what a compression machine is . what does it do and how do you get hold of these.. I need something to help my legs not to be too swelled. are they expensive?

[CCT67 in reply to caroline-din]

Hi

Pneumatic compression pump simulates MLD. Thy have air chambers- the more chambers the better. I have a Flexitouch (from America which has 32 chambers). Most pumps on the UK market have 8-16 chambers. The cost varies roughly from 2k - 5k depending on manufactures. Some of the names of UK pumps re Haddenham Lymphflow and the Lymph press. Generally, the more chambers the more expensive (my observation).

You could ask your LE therapist or nurse for info - most LE clinics are familiar and many have a pump at the clinic to try out.

If your legs are swollen and you don't know the cause then ensure you get a LE diagnosis and suitable compression garments before investing in a pump x

[The_Lympha in reply to CCT67]

Hi CCT67 - did you buy your Flexitouch in England? Or are you in America? I would like to get a Flexitouch but thought they were not available in Europe. Thanks

[CCT67 in reply to The_Lympha]

Hi i got mine in America as they are not sold in the UK yet. However the LE research team at Derby are currently undertaking Flexitouch trials. Their hypothesis is that Flexitouch reduces limb volume more effectively than standard pneumatic compression pumps. I had to jump through a lot of hoops to buy it privately in America - even privately a prescription from a US consultant is required to buy it. The device is made in Germany and has a switch to move from 110 to 220 volts which makes it universal. Tactile Medical will be eventually move into the international sales market but don't have a timescale yet for sales in the UK. Luckily I go to the US twice per year so I could make the arrangements to meet with a consultant in the US with all my paperwork/scans/reports from St George's in London and Oxford Lymphoedema Practice to enable him to give me a LE diagnosis and prescription for the Flexitouch. I had also done all the paperwork in advance and lots of liaising with Tactile to enable them to send me the device as soon as the Consultant wrote the prescription for it. Hopefully it won' everything be long before it can be bought here. I did save on the VAT by buying it in America.

[Applekenke172 in reply to CCT67]

Good evening CCT67 and thx for your response. I've now managed to buy a Press 4 Sequential gradient compression machine from a company called Sissel UK and they are based in West Yorkshire. I must say that I am very happy with it so far.However I'm still puzzled as to how long i should use it for as well as how often i should use it in a week??

[CCT67 in reply to Applekenke172]

Hi

Re how long to use it?

Does it have a programme or do you enter the number of minutes for the session? Most pumps have a programme with pre-set number of minutes, often 45 minutes. (Mine is 60 minute programme that simulates MLD).

Re how often to use the pump each week?

This depends on your LE limbs, severity of LE, and your daily schedule. I can't walk without draining each leg, every day for 1 hour each. I do a session in the early AM and again PM before bed. Most people I know who have a pump use it daily or twice daily.

Also, remember to drain your trunk/upper body before and after using the pump 😊

[Littleh3 in reply to CCT67]

Hi CCT67 I am attempting to begin this process of obtaining a flexitouch in the US, just wondering which consultant you saw ?

[CCT67]

Hi Applekenke

If you have not been referred to a LE clinic then you can seek a referral from your GP, and many of the Uk clinics accept self-referral. Generally speaking, Vascular consultants know a little bit about LE but are not LE specialists. The specialists in the UK are at St George's Hospital Lymphoedema Clinic in London - Professor Mortimer and Dr Kristiana Gordon.

A LE specialist nurses generally know MUCH more about suitable compression garments than Vascular medics. The Vascular surgeon (who told me he as an expert in LE) put me into Vascular garments instead of LE compression garments. When I was seen at St George's they straight away pointed out the garments were wholly unsuitable - thank goodness! I had accepted the Vascular Consultant's word that he knew what he was doing. He later acknowledged that he still had much to learn about the 'world of compression for Lymphoedema'. I feel in much safer hands with my LE specialist nurse at my local LE clinic - if you have a LE clinic where you are then my humble advice is to get assessed there

Both MLD and a pneumatic compression pump will have much better results if you are also using suitable compression garments x

[Applekenke172 in reply to CCT67]

Hi CCT67

Thx you so much for the extra information,I now realise that I don't know as much and have been searching endlessly as well as questioning myself about clinics and extra information/help. Even my GP hasn't been forthcoming with this type of information. As well as where I'm referred to for my compression garments. It all makes sense now,especially when I ask about what exercises I can do to keep active or types/brands of shoes I can wear when I can't fit into my current shoes,boots or trainers because they don't fit due to swelling of feet. Both places look at me blankly like I'm crazy.

[CCT67 in reply to Applekenke172]

It's very unfortunate that GPs receive very little medical education about the lymphatic system and lymphatic diseases, therefore they are not a good resource for us when we expect they will be. Some GPs have learned all about LE from their patients not the other way around!

Is there a LE clinic in your area? If not, a qualified MLD therapist can give you daily exercises for your LE limb.

As far as shoes go, one of my Lymphie feet is size 39 and the other size 41 due to LE. It's a hunt to find shoes that work. A lot of Lymphies like Cozi Feet shoes so you might look there. I like Joseph Seibel and Fit Flop which now make closed shoes too. They are not cheap but stand up well.

Life with lower extremity LE can be very challenging in numerous ways so getting signposting, inspiration and support on this, and other web support groups including brilliant support groups on Facebook is essential! X

[SmallBlueThing in reply to CCT67]

I wonder if the Prof has a personal interest? My great grandmother shared the name before she married. I met one of her daughters, my great aunt, in her 80s but being an untreated primary lymphie hadn't seemed to have held her back. My grandmother died in her 40s, not showing noticeable signs. My mother developed primary quite late in life. One sister has had it since early childhood. My legs would swell a bit as a child, but my primary really showed itself after an insect bite in my early 40s.

[CCT67]

Professor Mortimer started studying the lymphatic system as a young man at Oxford when he was completing his medical Dermatology degree. His tutor suggested he specialise in lymphatics and that is how he got into this field of study. He was the only specialist looking at the genetic component for decades. Only in the last 10-15 years have other medics got on board. Professor Mortimer was a real trail blazer and he is such a lovely genuine man,too. He didn't have a personal reason for becoming a LE specialist per se, however he is both professionally and personally committed to helping all of us with this disease. Years ago he founded th British Lymphology society (medical society) and the Lymphoedema Support Network. You can read more about him and LE treatment in his brand new book Let's Talk Lymphoedema that he wrote with renowned photographer Gemma Levine who has upper extremity LE. It's downloadable from amazon however you get a free copy if become a supporting member of the LE&RN/Lymphoedema Education and Research Network which is an international charity based in New York City. He is on their medical advisory board. Check out thir website which is a wealth of information. They have secured millions of dollars in the past 3 years for LE research which may very well lead to a cure for primary and secondary LE being discovered 😊

[SmallBlueThing in reply to CCT67]

Thanks!

[Eileen28 in reply to CCT67]

Professor Mortimer is a lovely man. He has retired now, but I was one of his patients. He trained a lovely lady doctor before he left the hospital.

I really liked his book. It was very detailed, and informative.

I bought a Haddnan lymph drainage machine a few years ago, with the garments. I paid £3.200 for it. I used it a few times, and it has been sitting there ever since. I can see on here people are saying they ate very useful. I didn’t like it. Maybe I just didn’t persevere enough.

Basically I wasted my money. The machine is a good one. I just didn’t like it.

[CCT67 in reply to Eileen28]

Hi Eileen

Sounds like you perhaps you didn’t give the LymphFlow pump a chance if you only used it a few times? I would think more than just a few pumping sessions are needed to form a true judgment of its efficacy. Most Lymphies with pumps use them daily, sometimes twice daily. If you want to sell it there are lymphies looking to buy second hand pumps as they can’t afford to buy brand new.

Prof Mortimer is a lovely man. He has retired but only from most of his NHS work. He’s still very busy in the lymphatic world ie involved in projects abroad (India) and with other international research collaborations. The lady you referred to is Dr Kristiana Gordon. She is a specialist consultant and been the clinical lead at St George’s University Hospital’s Lymphoedema Service for several years. Her MD specialisms are Dermatology and Lymphovascular Medicine, and she has a PhD in Lymphology. She’s highly sought after due to expertise in Lipedema and Lymphoedema. And she’s the most lovely, compassionate person I’ve encountered in the medical world (I see her a couple of times per year). The whole team at St. George’s are brilliant thanks to Prof Mortimer who initially built up the department years ago

[Eileen28 in reply to CCT67]

Hello.

I have to entirely agree with you. I didn't give the pump a chance. I really didn't like it.

My Lymphodema is well under control with compression garments, and lots of walking, and moisturising.

I also go to the lymphodema clinic twice a year. I have seen Dr Kristina Gordon. She really is a lovely lady. I agree her expertise is undeniable, and she is very compassionate, and understanding.

At the moment I am being managed by the lymphodema nurses. My examinations are unremarkable, so happily I have no need to see the doctor.

I know my machine will just sit there. I will not use it. It is really just going to waste sitting there. It is in new condition. As I said I used it a handful of times, and decided I didn't like it. It comes complete with a whole body garment. So covers from head to toe.

I would be happy to sell it, so thst somebody could have the benefit of it. I'm not really sure where to sell it. I wonder if there would be any takers on here. It seems like this could be the perfect place to sell it.

[F18Edge in reply to Eileen28]

Hi, noticed that you were thinking of selling you machine is that still the case?

[carolinet]

Can I ask if you needed a referral document/ letter from your GP or clinic to buy one of these machines? I looked into getting one and have the referral letter for a Lymphassist which cost about 1k but some of the ones discussed sound as if they may be a cheaper option. I agree with everyone about the cost of MLD and am hoping that a machine may be a cheaper option in the long term. Many thanks .

[Applekenke172 in reply to carolinet]

As far as I'm aware,you don't need a letter. And I'm quoting from my personal experience regarding appts I've had with various consultants from the vascular department I attend.

[Niktcx]

I use a pulse press 12 pro machine which works well. It is much smaller and lighter to move around and I travel a lot with mine. It was a fraction of the price of the lympha press machine . The manufacturers are based in Luton MJS group.

[corellc]

I have had a Tactile machine for 7 months, and I have gone from using it one hour per day to 2 hours per day. It is outstanding.

[mimi96]

Hello there everyone,

My name is Mia and i'm currently studying product design (final year) at Cardiff Metropolitan University. For my studies i want to help design a product that will help people with Lymphoedema re gain confidence. I want to gain a greater understanding and gain valuable views so i can conclude to a good design.

Basically i feel that i really want to make something to help you people out. I've been reading through these forums for a while now and i've learnt so much and really feel like i can design something to help you out.

If you feel like you have more information that could help my studies feel free to email me at [e-mail]

Do not complete the survey if you feel uncomfortable, its a really personal matter and only answer questions if you feel you can talk about it.

the survey is only 6 questions the link is here ------> surveymonkey.co.uk/r/NYSTSM2

once again thank you sooooo much!

[glynda]

I have used one for about 10 years- both my legs. I use it every day. Wonderful!

[megs2]

Ive had my compression machine with a trouser attatchment for a few years & although I hate having to use it, I couldnt manage with out it. I have abdominal & bilateral leg primary lymphodeema & the pump works. I should use it every other night at least for an hour but I dont always & using it a few times a week still keeps things moving. Couldnt manage without it. Megs

[Juliawoods]

MLD was so expensive and I didn’t think it was doing any good. I ve just Last week purchased a haddenham lymphflow advance direct from the manufacturer and I think it’s working already well worth the money. I purchased a recon machine for slightly cheaper.

[DolceVida]

I have a Sequential Circulator (8 chamber) for my lymphedema leg and I swear by it. I put it on every night when I go to bed for 1-2 hours and it has helped immeasurably to keep my lymphedema under control.

[NievesAzules]

Hello,

I have primary lymphedema in my right leg. I used the Lymphapress pump with a leg sleeve with four large chambers for about 3 years. Initially, it seemed to work ok, but then my skin started to harden - not good. Then I saw a PT for 5 weeks and she did MLD & wrapping which softened my skin. Then I applied to get Tactile’s Flexitouch which has a sleeve with far more chambers. My skin has stayed soft. I have noticed a bit of a reduction of swelling in my calf (although fluid seems to still back up at my knee).

[buddygreco]

I have the Lymphapress, l think its the best. Tried another one, such a hassle.

[Hidden]

I have a Lympha Press machine Model 51. I have had the machine for several years. It works well. Easy to set and use. It is a compact size and can be used when traveling. Mine was paid for by Medicare.