I’m a newbie here but recently wrote I’ve had idiopathic lymphoedema in both legs for 10 years. After diagnosis I was prescribed stockings and cream ! There’s no lymphoedema clinic where I live and have accepted my situation and got on with it. I read on a link about Physiopod Deep Oscillation and wonder if anyone has one or knowledge of this product
Physiopod Deep Oscillation/ Hivamat : I’m a newbie here... - LSN
HiI think you have a right to be referred to the nearest clinic. I have primary lymphodema both legs and use lymphapants. Perhaps they might now be available under NHS funding?
Thanks for your response. I asked for a referral to a hospice in my road where MLD is done but the vascular consultant said this would not be NHS funded and the hospice won’t see me without a referral. A private clinic in my home town is starting up in the New Year so maybe…
Hi SAT It’s very unfortunate that your have no local Lymphie clinic. It’s the unfortunate reality that many clinics have had to shut or close many patients that were previously open under them.
The BLS is currently gathering data on the effects of clinic closures/reduced service provision and its impact on patients, I’ll be posting the BLS survey link separately on this site later this morning.
Re Deep Oscillation Therapy via Hivamat/PhysioPod, I’ve had my own DOT device for nearly 7 years. I use it daily for SLD as I find it much more effective than using my hands. (It helps prevent and reduce fibrosis). You can read more about my experience of DOT and PhysioPodUK on the link below. If you have queries don’t hesitate to contact PhysioPodUK which is the official UK distributer (it’s a German product). Mary & Julie will be happy answer your queries. If you haven’t already looked on PhysiopodUK website you’ll find quite of lot of information there. DOT has been available in the UK for a decade and used by Lymphoedema hospitals & therapists in Europe for over 20 years.
Thanks very much for your comments. I’ve already had a long chat with Julie and also heard from a supplier of Lympha Press who has primary lymphoedema.I plan to visit a recommended therapist for a Physiopod treatment in the New Year. The cause of my condition is unknown and limited to both lower legs. Having read your interesting testimonial I’m currently inclined towards your treatment option but there’s a large cost either way . Eventually I’ll have to bite the bullet!
I will be very interested to look at BLS survey; I've had a pretty miserable time trying to access NHS support for my lymphoedema, ever since my old clinic closed at the beginning of the year.
Hi SAT Good to hear you’ve spoken with Julie.
I also have a pneumatic compression pump similar to LymphaPress. Indeed both DOT device and reputable pump system are quite expensive. I’m not sure if COVID impacts on trialling a LymphaPress for a week, it used to be possible. I would suggest you try both treatment modalities as they are very different from one another. The best thing about DOT is it’s small, portable size. I take mine everywhere including international travel. It easily fits in my carry on and is light weight. Unfortunately, a compression pump is quite bulky requiring a lot of suitcase space. Of course if you don’t travel much then the size isn’t as relevant.
You’ve said your LE is idiopathic. Have you had a Lymphoscintigram or ICG Lymphography (diagnostic scans). Most of the time when LE symptoms occur in childhood & adulthood (as opposed to present at birth) and there hasn’t been any trauma to the limb/s, then the cause is genetic ie Primary LE
Primary is most commonly seen in the lower limbs, and clinical symptoms often don’t appear straight away even though the genetic blueprint is already determined pre-birth. Late onset Primary is really quite common - it appears to the patient (and often to the GP or Consultant) to be spontaneous and inexplicable when symptoms appear, but in fact the disease was present in a pre/sub-clinical stage unknown to the patient.
Wow! Hadn’t thought of that possibility. Yes I had a lymphoscintigram which resulted in the crunch diagnosis. Prior to that I had CT, Ultrasound and MRI. I’ll look for the consultants letter and see if there’s anything else you might recognise to suggest primary instead of secondary
I've had a Physiopod DOT device for nearly 2 years; I use it most mornings to facilitate my SLD routine, prior to putting on my compression stocking.
I decided to choose the Physiopod over a compression pump because I'm a fidget and couldn't see myself sitting still whilst the pump went through its programme.
However the one thing that has been the most beneficial, by far, in controlling my swelling is a well fitting custom made flat knit stocking.