Deep Oscillation for Self Care of Primary Lymphoedema: Catherine Provides Updated Testimonial Six Years on
17th February 2021 Hi Mary and Julie It’s been several years since my first review of the Deep Oscillation Personal Sports which I call my PhysioPod that I bought in 2015, so I thought I’d send you an updated testimonial...
In February 2016, after 6 months of daily use, I had only praise for self-administered Deep Oscillation Therapy (DOT). Six years later in 2021, I can still only think of positive things to say about DOT with my PhysioPod. I’d give up my mobile, tablet and laptop before I’d give up my PhysioPod!
Not a day passes without my using my PhysioPod to complete DOT and simultaneous Simple Lymphatic Drainage (SLD) as part of my daily self-treatment regimen. As I have a diagnosis of Multi-segmental Primary Lymphoedema with Global Presentation, all four of my limbs, lower and upper torso, and my head and neck are affected. I regularly use my PhysioPod for a few hours daily (split between AM and PM) to complete SLD on all areas of my body that I can physically reach.
The qualified lymphoedema therapist that I go to for Manual Lymphatic Drainage (MLD) treatment also combines MLD with DOT. As I have witnessed how effective DOT can be for lymph drainage and also for reducing fibrosis/thickened tissue caused by disease progression, I always encourage others living with Lymphoedema to give DOT a try. Many qualified lymphoedema therapists in the UK offer DOT in their practice. I’m also aware that a few NHS Lymphoedema clinics have the Physio Pod which are available for patients to take out on loan; this is I how I first learned of and trialled the device in 2015.
As the PhysioPod model that I have is very small, light and portable, I’ve taken it away with me including abroad numerous times in my carry-on bag. I always ensure that I have it at the ready wherever I am. In the past 6 years I have experienced no significant technical issues with my PhysioPod, it’s been completely reliable day after day, despite the many thousands of hours I have put it to work.
In 2015, I described my new Physio Pod as my new life partner. In 2021, I really can’t imagine and would never want to imagine, daily Lymphoedema self-treatment without my faithful PhysioPod.
Thank you for offering such swift and helpful support when I’ve contacted you for advice or had any queries.
With best wishes,
"I was diagnosed with severe Primary Lymphoedema in my right leg in May 2015, after onset of symptoms since 2009 (however I didn't know the symptoms were indicative of what eventually became such a wretched, debilitating disease). I also have a secondary diagnosis, given in September 2015, of a very rare nerve disorder also in my right foot and leg, called Erythromalalgia; this has been exacerbated by the Lymphoedema swelling. It's exceedingly painful, in addition to the painful episodes from the Lymphoedeme swelling (especially in hot muggy weather).
I have been assessed numerous times by Consultants and Specialists, both NHS and paid for myself, in an attempt to determine precisely what is wrong with my Lymphatic’s and obtain medical intervention in the UK and worldwide. After assessments by Professor Mortimer and his team at St Georges Hospital in London, and very recently a further assessment by Professor Furniss and his team at Oxford University (in order to determine if I'd be a candidate for their pioneering Supermicrosurgery), the verdict is that the form of Primary Lymphoedema that I have is inoperable. The very few surgeries that are being trialled will not be helpful to me due to that nature of my Primary Lymphoedema: failing nodes in my groin, absence of any lymph vessels in 1/3 of my leg, and failing lymph valves in my foot up to mid-calf. Consequently, there is no lymphatic uptake, no lymph transport up my right leg. In February 2016, my legs underwent specialised testing; my right leg was found to have 900ml excess lymph/fluid trapped between my toes and mid-calf. My upper leg has trapped fluid too due to no working groin nodes preventing flow upwards into my trunk to drain.
So, how am I managing the debilitating symptoms of Lymphoedema?
My leg is very swollen and I must wear bespoke, thick compression garments. Between March - September 2015 I went into debt paying for an MLD therapist to undertake MLD twice weekly. I really needed it daily, but at £60 per session it was not feasible; I was already spending £120 weekly. I had not budgeted for this but it was essential to my coping with Lymphoedema, however I couldn't afford it year on year twice per week.
In September 2015, my local Lymphoedema Clinic in Surrey loaned me a DEEP OSCILLATION® Personal SPORTS - (DOPS) to trial for four weeks. I had no expectations, other than hearing a well-respected healthcare professional in London say she'd consider it a helpful management tool for Lymphoedema, based on what she'd seen anecdotally.
It only took four days of using the loaned DOPS to realise it would become my new life partner. That's no joke. I knew I would have to get my very own device.
One of the best features is that it's portable - I can take it from room to room, on holiday, to my workplace, anywhere, as it's light and small.
I haven't needed to pay for any MLD therapy since I received my own personal unit at the end of September 2015. The MLD therapist I went to from March - September 2015 has been able to see the effect DEEP OSCILLATION® has had on softening my thigh fibrosis between October 2015 - January 2016. She's a witness to the effectiveness of DEEP OSCILLATION® and is looking into obtaining one for her practice.
I've travelled abroad with my device to Spain, Germany and America and will take it anywhere I go, I would not cope without it in terms of managing the wretched Lymphoedema symptoms. I hope and pray that a cure for Primary Lymphoedema will be within my lifetime, I'm only 48 and its utterly depressing to think the disease will progress without a cure for my leg and the limitations it's imposed on nearly every aspect of my life. The DEEP OSCILLATION® Personal SPORTS unit has truly become my life partner, I wouldn't be without it - I would not be able to go to work and get through my day-to-day life without it - and I'm not exaggerating or dramatising when I say that.
I can't recommend the DEEP OSCILLATION® Personal SPORTS highly enough as an essential management tool for anyone who has Primary or Secondary Lymphoedema.
I would genuinely like to make contact with others living with Primary Lymphoedema, in person, online or both, as having this disease is very isolating. Please contact PhysioPod® UK Limited for my email address, if this is of interest to you."
9th March 2016
Catherine Tucher has the DEEP OSCILLATION® Personal SPORTS, ideal for "home use" and travelling abroad, taken as carry on luggage