What was up after Allen & Hines (1940)?

By Tatjana van der Krabben

When you zoom in on lipedema literature, you mainly find Allen & Hines (1940) in the USA and a huge leap towards the late nineties. That’s where it seemingly resurfaces in Europe, mostly in the German context of descriptive cases and liposuction. This blog is an attempt to partially bridge this gap. I’m jumping from one paper to the next to see where it takes me. Obviously I found heaps more. In this blog I highlight the more interesting finds.

Other research on lipedema in the US

My first lead was L.E. Wold, who published with Allen & Hines on lipedema. He too vanished into thin air together with Allen & Hines.  The last reference being a publication by Hines (1952): http://www.researchgate.net/publication/8750774_Lipedema_and_physiologic_edema.

 J. Beninson and J.W. Edelglass from the Henry Ford Hospital in Detroit, Michigan published on it in 1984. The paper has an intriguing title: Lipedema: the non-lymphatic masquerader. They already observed it may be (part) hereditary. They also mention treatment with diuretics was unsuccessful and they actually refer to the extraction of fat: “Rank and Wong have had some success with surgically debulking some fatty tissue.” Alas, no other publications I could find on lipedema by these gentlemen. Plenty on lymphedema, though.

I also found G.H. Rudkin and T.A. Miller from UCLA School of Medicine. This is the abstract of their paper: http://www.ncbi.nlm.nih.gov/pubmed/7972431. While looking into lymphedema, they also found lipedema cases (1994). The lipedema paper was unfortunately a onetime thing. For the both of them, as far as I can tell.

There were a few other dotted incidents, mostly of a descriptive nature, expressing surprise on the existence of lipedema and/or debating the name tag. Like Eisman and Swezey from the University of California (1979) advocating the term ‘juxta-articular adiposis dolorosa’ or JAD for short, mainly making an issue of fat hindering the joints – with good reason, it being a source of pain and damage to the joints. Yet it just never quite sticks anywhere, not until much later when dr. Herbst picks up on the subject – nothing within that gap until the mid-nineties.

From mostly descriptive stuff to some serious content

“We found cases of women with fat legs etc.” I found enough papers from ‘the gap’ along those lines to wallpaper my entire house! I pushed onwards, trying to get to the good stuff. My definition of that? A doctor looking beyond quoting Allen & Hines and trying to learn or find something new on lipedema.

The first I found from ‘the gap’ was in German, but…from Switzerland, official translation of the title: Vascular diseases in lipedema of the legs. Special symptoms, common therapeutic results, viewpoint on vascular surgery, by U. Brunner (1982). Brunner seemingly also had a non-sticking attitude towards lipedema: no other publications on the subject. It’s a vital piece, (already) warning to take particular care when proceeding with vascular surgery in case of lipedema.

Next, I found a real treat: Experimentelle Untersuchungen zur Frage akrocyotischer Zustandsbilder by Moncorps, Brinkhaus and Herfeld-Münster. It mentions the specification on the ‘Moncorps’ type of lipedema. I knew of the Moncorps type – was diagnosed with that myself – but never saw the details of the relevant publication. Currently not really en vogue anymore, but reference to lipedema nonetheless. This is the fun part: published in Berlin in…1940!

I still have a gap to look at, but apparently the Germans never jumped on the train, they were already on it from the start.  

Finally a pattern started to emerge. Scattered across Europe, tucked away between a long list of mostly descriptive papers, I found more in-depth research. Bilancini et al (1995) touch upon a long list of significant references regarding research on our lymphatics and veins. They boldly call lipedema a chronic vascular disease and quote German, Dutch, French and Italian literature from the eighties and early nineties. A theme, cross references and a subcutaneous sneak peek! In short, in the 1980’s it picked up speed, mostly in Europe. Not just Germany.

Very vital findings available on healing issues after surgery (Tiwari et al, 2003 and Macdonald et al, 2003, Brunner, 1982), our lymphatic and venous functions (for instance Harwood et al, 1996 and Wittlinger & Wittlinger, 1978) and the use of scans to help differentiate lymphedema en lipedema and other conditions leading to swollen legs (for instance Boursier et al, 2004 and Dimakakos et al, 1997). A pleasant surprise among all that European input was ‘CT of swollen legs’ by Australian B.F. Vaughan (1990). Unfortunately these efforts received far less attention than the descriptive stuff and liposuction.

Besides liposuction

When liposuction made medical headlines, most quotes, also among patients, evolved around liposuction papers: results, risks, long-term results, techniques. I get it: it’s the closest thing found to a cure – although it’s not a cure, but a road to relief. You get the false impression nothing much went on after Allen & Hines. The research on our veins and lymphatics got covered in dust. Bloody shame if you ask me. Most doctors are clueless you can’t just dive in with a scalpel, what people like Brunner already warned about in 1982. Now we mostly still need to warn our doctors ourselves – if we know there are increased risks of complications after surgery in case of lipedema.

Yet, there is light at the end of the tunnel. Until the 1990’s publications were highly incidental. Severely hindered by the fact virtually each researcher only touched upon it briefly, rarely proceeding more in-depth. The last few years there are many, many publications. Not just on liposuction. Research on the exploration of suspected further symptoms like hypermobility, vitamin B12 and D3 deficiency and the genetic factor, further research on our capillaries and veins, our fatty tissue: it’s happening as we speak. Either recently published or about to be published. The abundance of papers gives me hope it will percolate its way into medical praxis more broadly.