lymphfantastic

Die Suche geht weiter- The search goes on

Is the problem lymphoedema and its treatment or is it our knowledge?

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Unglaublich, ich würde sofort um die Welt reisen um diesen Mann kennenzulernen , es muss doch langsam klar werden das alle gemeinsam arbeiten müssen damit etwas global bewegt werden kann. Hut ab Prof. Piller !

 

Editorial: Prof. Neil Piller , Neil Piller is Director Lymphoedema Research Unit, Department of Surgery, School of Medicine, Flinders University, Adelaide, South Australia, Australia.

 

Journal of Lymphoedema, 2014, Vol 9, No 1

Why do we struggle gaining recognition from patients and healthcare systems about the importance of the early detection of signs of lymphatic system failure, when we have tools available to do this? Why do we struggle getting funds for lymphoedema screening programmes, when we have strong indications they work? Why do we struggle with a serious lack of knowledge in the healthcare professional population when it comes to lymphoedema? Why do we see apparently contradictory outcomes reported in the literature in trials, systemic reviews and meta-analyses? Why don’t our healthcare systems seem to care ? So many questions. Maybe it’s us. Maybe its the words we use to describe lymphoedema as one form of chronic oedema. Maybe it’s the lack of — or relatively tight — funding available to undertake reasonably large clinical trials. Maybe we don’t collaborate closely enough, or maybe we just don’t know what to do and neither do the patients. Knowledge starts with education and, certainly, there is very little in medical courses focusing on lymphoedema. Vuong et al (2011) summarised findings from prior papers and discovered that about 50% of the Chairs in physiology departments at medical schools in the US indicated that 30 minutes or less are dedicated to lymphatics teaching with about 40% receiving 1–3 hours, while some only received 15 minutes. Incredibly, more than 60% thought this was sufficient! Furthermore, when lymphatic information was presented, it was only taught under the heading ‘lymphatic information’ 6% of the time. In the remaining 94% instances, it was presented in discussions relating to/as part of another of the bodily systems. So we have much to do in terms of enhancing knowledge then. How can we expect a GP or specialist to effectively deal with a patient presenting with lymphoedema with just this basic level of training? How can we ever expect them to gain an interest when they know so little about the lymphatic system and its disorders? There is significantly more information presented in the area of chronic oedema. Maybe, since lymphoedema is a form of chronic oedema, we could think about changing the term we use? However, on the negative side, we would then lose ‘lymphoedema’ as being associated with damage, malformation or destruction of the lymphatic system. We would also perhaps lose the ability to develop the area of lymphatics and lymphoedemas into a speciality area in the future. The origins of lymphoedema treatments (massage and compression) are many decades old and we are still discovering new things about the structure of the lymphatic system, with new imaging techniques, such as indocyanine green (Pan et al, 2008; 2013). Many treatments are undertaken based on information from trials that often were not conducted with as much control and rigour as they would be today. Trials often include a small sample size and can be heterogenous, leading, as could be expected, to differing or equivical outcomes that when read by practitioners, patients and healthcare system insurers are unlikely to instil confidence in many treatment or management strategies. Results from a recent trial, for example, showed no benefits from compression stockings for the prevention of lower-leg lymphedema after inguinal lymph node dissection (Stuiver et al, 2013), but perhaps the a priori criteria of effects were too high. As another example, a meta-analysis by Huang et al (2013) indicted little or no effect of even one of the mainstays of treatment — manual lymphatic drainage — while a systematic review and meta-analysis on pneumatic compression pumps for breast cancer-related lymphoedema showed that while intermittent pneumatic compression could alleviate lymphoedema, there was no significant difference between routine lymphoedema management with or without a pneumatic pump (Shao et al, 2014). So why this variation in outcomes and uncertainty about treatment? Many review authors indicate it is related to methodology issues and rigour but, more often, related to the study group size. The confusion and uncertainty can be unsettling, but must be dealt with. We can only do better for our patients by working together, combining resources and, therefore, having a stronger voice. I believe one step towards this can be made through our individual links to national and international groups, such as the International Lymphoedema Framework (ILF) and the International Society for Lymphology. At present, the ILF is working with its members and national frameworks to raise the profile of lymphoedema nationally and internationally, and to make lymphoedema a priority on national healthcare agendas. The ILF also aims to help clinicians lobby for appropriate funding or reimbursement for lymphoedema care; address inequality of provision issues; implement and evaluate lymphoedema services based on best practice; and create an international lymphedema community that collectively strives to improve the evidence base for treatment and professional practice.

References

Huang TW, Tseng SH, Lin CC et al (2013) Effects of manual lymphatic drainage on breast cancer-related lymphedema: a systematic review and meta-analysis of randomized controlled trials. World J Surg Oncol 11: 15

Pan WR, Suami H, Taylor GI (2008) Lymphatic drainage of the head and neck: anatomical study and clinical implications. Plast Reconst Surg 121(5): 1614–24

Pan WR, Wan D, Levy S, Chen Y (2013) Superficial lymphatic drainage of the lower extremity: anatomical study and clinical implications. Plast Reconst Surg 132(3): 696–707

Shao Y1, Qi K, Zhou QH, Zhong DS (2014) Intermittent pneumatic compression pump for breast cancer-related lymphedema: a systematic review and meta-analysis of randomized controlled trials. Oncol Res Treat 37(4): 170–4

Stuiver M, de Rooij JD, Lucas C et al (2013) No evidence of benefit from class II compression stockings in the prevention of lower limb lymphoedema after inguinal lymph node dissection; Results of a randomised controlled trial. Lymphology 46(3): 120–31

Voung D, Nguyen M, Piller N (2011) Medical Education: A deficiency or disgrace? Journal of Lymphoedema 6(1): 44–9

http://www.woundsinternational.com/pdf/content_11320.pdf

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Autor: monica boersch

Vor ein paar Jahre bin ich an Krebs erkrankt, bedingt durch meine Wertheim OP, Bestrahlung und Afterloading habe ich Lymphödeme bekommen, für mich sehr überraschend da ein paar Jahre dazwischen lagen, ich wusste das etwas nicht stimmt aber leider konnten unzählige Ärzte nicht helfen. Hier ist es auch so, wie in viele viele andere Länder auch, dass Lymphatische Erkrankungen erstens nicht wirklich ernst genommen werden und zweitens das kaum ein Arzt darüber Bescheid weiß, wie den auch, wenn in den Lehrbüchern so gut wie NICHTS steht. Mein Bestreben ist alles zu tun was in meiner Macht steht um dafür zu sorgen das jeder der betroffen ist weiß was er/ sie tun kann um sein Leben wieder so gestalten zu können wie er/sie das möchte. . Ich suche und suche immer weiter nach alternativ Möglichkeiten um meinen Leben so normal wie möglich zu gestalten. Die Empfehlungen die ich gebe sind bei mir durchaus wirksam und ich erziele gute Erfolge und behalte meine Lebensqualität. Mein Blog ist kein Ersatz für eine Ärztliche Betreuung und ich empfehle jeden mit seinem Arzt über Therapie Möglichkeiten etc. zu sprechen. Ich kann nur anregen und durch meine eigene, persönliche Erfahrung eventuell einen weg aufzeigen. Seit 2009 beschäftige ich mich weit über das übliche hinaus mit Lymphödeme. Nicht nur die „Diagnose“ interessiert mich, sondern ebenso was für einen Effekt es hat auf unser Sozialleben und unser Selbstwertgefühl. Ich habe viel Zeit und Geld investiert in andere Länder zu reisen um alternativen kennenzulernen, ich war bei Internationale Firmen als Gast um zu sehen welche Lösungen geboten werden, habe fast jeden Lymphologischen Kongress besucht um mich weiter zu bilden und einige Projekte als Freelancer machen können. Wie ihr sieht ist das weitaus mehr als nur ein Blog, es müssen sich grundliegende Dinge verändern um uns alle das zu geben was wir verdienen, Respekt, Empathie und das Bewusstsein das wir nichts Vorübergehendes haben, sondern das dieses ein Teil unseres Lebens ist und auch bleibt. After being diagnosed with Cancer and going through treatments, Wertheim operation, radiation therapy and afterloading I was suddenly hit by Lymphedema. Totally surprising since nobody even gave me a hint that this could happen. Running from one doctor to the other trying to find out what is wrong with me and why my body was changing so quickly, once again being in the situation of not having control of anything. This made me so angry that I started studying like crazy, I wanted to find out why we are left alone, why doctors don’t have a clue (sorry, most doctors) about Lymphedema and the consequences in all aspects of our lives. Sadly, I had to realize that hardly anyone knows anything about it. I started my quest to find alternatives in treatments, I traveled around the world investing my time and money, fortunate enough to spend time in companies specialized in Lymphedema treatment to learn all that I could and can. I hardly miss any Lymphatic congress, listening to the internationally known doctors, discussing what is important for us as patients. I have done some freelance work for the companies that I believe in and had the chance to work with a wonderful company in New Jersey. I have tested alternatives and I am still searching and studying because it is my quest to change things for all affected by this, not only our physical wellbeing but most importantly the impact that it has on our daily life. It’s not something that’s going to go away, it’s with us until the end and the minimum that we can expect is being taken seriously, respect and empathy for our situation and the importance for all of us that have the possibilities to change things for the better. There is so much work to do, and I am not going to give up. As you can see this is more than a blog. If you find something interesting on Lymphfantastic but you are having problems with the German, then just send me a message and I will be happy to translate that for you, my native language is English so that is no problem. Have a great day and looking forward to hearing from you soon. Bless you all, Monica

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