The onset of Catherine’s symptoms began in 2009, Primary Lymphoedema was diagnosed in May 2015. In September 2015, a very rare nerve disorder was also diagnosed in the right foot and leg, called Erythromalalgia exacerbated by the Lymphoedema swelling. In this very honest account of feelings Catherine reports how the DEEP OSCILLATION ® Personal has become an essential management tool home and abroad.
Nottingham, Nottinghamshire, UK, March 10, 2016 — The onset of Catherine’s symptoms began in 2009, Primary Lymphoedema was diagnosed in May 2015. In September 2015, a very rare nerve disorder was also diagnosed in the right foot and leg, called Erythromalalgia exacerbated by the Lymphoedema swelling. In this very honest account of feelings Catherine reports how the DEEP OSCILLATION ® Personal has become an essential management tool home and abroad.
“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 was amazed during the first week it was on loan to me at its ability to move lymph up my leg and into my trunk i.e. the same outcome as when my MLD therapist worked on my leg. Moreover, tissue that had become fibrotic throughout my inner thigh started to soften after about ten sessions with the unit (using the 30 minute bespoke Lymphoedema programmed card circling applicator in the direction of flow as instructed by the Lymphoedema Clinic). My thigh had sensation again! I’d not had any sensation or proper feeling in my inner thigh for months as the fibrosis had increased.
I bought my own DOPS unit at the end of September 2015 and use it everyday, for 30-45 minutes every morning and again every evening. It’s the only way to effectively drain my leg of the accumulated lymph. The DOPS unit essentially does for my leg what it can’t do for itself anymore, transport lymph up into my trunk. At the same time, it’s helping my tissue to remain softer and work against tissue fibrosis, an ugly and unpleasant feature of Lymphoedema. 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 it’s 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.”
About PhysioPod® UK Ltd:
PhysioPod® UK Ltd is directed by Sisters, Julie Soroczyn and Mary Fickling who exclusively supply the UK and Ireland with internationally patented DEEP OSCILLATION® electrostatic massage therapy. Non-invasive, non-traumatic, electrostatic impulses are delivered (without pressure, saving the clinicians hands) through vinyl gloves or applicator heads. DEEP OSCILLATION permeates an 8 cm tissue and it is fast becoming the tool of choice for Lymphoedema and Lipoedema, treatment and management, with patients self-managing with the personal unit. PhysioPod® UK Limited are approved NHS Suppliers.
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PhysioPod UK Limited
Daybrook, Nottingham, NG5 6AS
0115 9167 685