{"id":18265,"date":"2026-08-19T06:05:02","date_gmt":"2026-08-18T18:05:02","guid":{"rendered":"https:\/\/thebuzz.apnanetwork.co.nz\/?p=18265"},"modified":"2026-08-19T06:05:02","modified_gmt":"2026-08-18T18:05:02","slug":"in-november-2024-two-new-zealand-women-arrived-at-the-same-private-clinic-in-germany-to-be-operated-on-by-the-same-83-year-old-surgeon-for-the-same-rare-condition","status":"publish","type":"post","link":"https:\/\/thebuzz.apnanetwork.co.nz\/?p=18265","title":{"rendered":"In November 2024, two New Zealand women arrived at the same private clinic in Germany, to be operated on by the same 83-year-old surgeon for the same rare condition."},"content":{"rendered":"

Sophie Roberts woke from surgery and could, for the first time in years, eat and drink without pain. Her seizures stopped, her bladder function returned. Within six months she had regained 20kg and was able to return to law school.\u00a0<\/span><\/p>\n

\u201cMy outcome from surgery was far better than we could ever have hoped, imagined or dared to kind of dream about,\u201d she says.\u00a0<\/span><\/p>\n

Leah Kennedy woke to a very different outcome. She believes the surgery has left her worse off and she regrets her decision to go.\u00a0<\/span><\/p>\n

\u201cHe has kind of left me in a mess. And I recommend they don\u2019t go to Germany,\u201d she says.\u00a0\u00a0<\/span><\/p>\n

The view from doctors is also split. Some say it\u2019s a lifesaving surgery while others are skeptical it is even needed and question the diagnosis that leads patients down this path. Health New Zealand, which does not offer this surgery, warns the operation is experimental and dangerous, urging patients not to travel overseas for it.\u00a0<\/span><\/p>\n

At the heart of both women\u2019s stories is a medical controversy with no easy solution. When does an experimental treatment become a breakthrough? And when does hope expose patients to unnecessary risk? These questions are dividing doctors and patients around the world.\u00a0<\/span><\/p>\n

The answers lie within a complicated, sprawling story that straddles the grey areas of medicine, science and humanity. It\u2019s explored in the RNZ podcast and multimedia investigation\u00a0<\/span>All In Her Head<\/em>.\u00a0<\/span><\/a><\/p>\n

A $200,000 chasm from diagnosis to treatment<\/strong>\u00a0<\/span><\/h3>\n

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Sophie Roberts and Leah Kennedy are among a growing number of New Zealanders diagnosed with the connective tissue disorder Ehlers-Danlos Syndrome (EDS) who are traveling overseas for the surgery Health New Zealand warns against.\u00a0<\/span><\/p>\n

They\u2019re desperate to resolve painful, even life-threatening symptoms from abdominal vascular compression syndromes (AVCS), which some doctors link to EDS.\u00a0<\/span><\/p>\n

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Leah Kennedy. Photo: RNZ\/Nate McKinnon<\/p>\n<\/div>\n<\/figcaption><\/figure>\n

There are four main types of this syndrome. In each, blood vessels are squashed, restricting blood flow to organs, causing severe pain, nausea and often an inability to eat.\u00a0<\/span><\/p>\n

All four are recognised in the medical literature, but there is debate about what some of them are, and how to diagnose them.\u00a0<\/span><\/p>\n

Having one is considered extremely rare. It is rarer still, therefore, that a person would have more than one. In fact, there is no scientific consensus on whether it\u2019s even possible to have more than one, or whether they are linked to the most common type of EDS.\u00a0<\/span><\/p>\n

Yet, an increasing number of people with hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD) are being diagnosed with several compressions at once.\u00a0<\/span><\/p>\n

This has created a controversial chasm in treatment.\u00a0<\/span><\/p>\n

In New Zealand, procedures to treat all four main compression syndromes in the abdomen are technically available but doctors rarely perform them. Patients with an EDS diagnosis say they\u2019re routinely blocked from accessing surgery that\u2019s given to others without the diagnosis.\u00a0<\/span><\/p>\n

But surgery to fix multiple compression syndromes in a single operation is now being performed in several countries including the US, Spain and more recently in Australia.\u00a0<\/span><\/p>\n

Most New Zealand patients head to Germany to see vascular surgeon Professor Wilhelm Sandmann, who has been performing this operation on EDS patients for more than a decade. However, he has attracted criticism from his peers over patient safety concerns.\u00a0<\/span><\/p>\n

Sandmann is one of the few surgeons globally willing to operate on multiple compression syndromes in a single procedure, sometimes on all syndromes at once. In Canberra, vascular surgeon Dr Gert Frahm-Jensen has started performing the operation in the last 18 months. He takes\u00a0<\/span>a more conservative approach<\/span><\/a>, treating up to three syndromes at a time, and only with patients over 17 years old.\u00a0<\/span><\/p>\n

RNZ<\/p>\n","protected":false},"excerpt":{"rendered":"

Sophie Roberts woke from surgery and could, for the first time in years, eat and drink without pain. Her seizures stopped, her bladder function returned. Within six months she had regained 20kg and was able to return to law school.\u00a0 \u201cMy outcome from surgery was far better than we could ever have hoped, imagined or […]<\/p>\n","protected":false},"author":6,"featured_media":18266,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[222,174],"tags":[],"class_list":["post-18265","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-latest-news","category-nz-news"],"amp_enabled":true,"_links":{"self":[{"href":"https:\/\/thebuzz.apnanetwork.co.nz\/index.php?rest_route=\/wp\/v2\/posts\/18265","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/thebuzz.apnanetwork.co.nz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/thebuzz.apnanetwork.co.nz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/thebuzz.apnanetwork.co.nz\/index.php?rest_route=\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/thebuzz.apnanetwork.co.nz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=18265"}],"version-history":[{"count":1,"href":"https:\/\/thebuzz.apnanetwork.co.nz\/index.php?rest_route=\/wp\/v2\/posts\/18265\/revisions"}],"predecessor-version":[{"id":18267,"href":"https:\/\/thebuzz.apnanetwork.co.nz\/index.php?rest_route=\/wp\/v2\/posts\/18265\/revisions\/18267"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/thebuzz.apnanetwork.co.nz\/index.php?rest_route=\/wp\/v2\/media\/18266"}],"wp:attachment":[{"href":"https:\/\/thebuzz.apnanetwork.co.nz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=18265"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/thebuzz.apnanetwork.co.nz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=18265"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/thebuzz.apnanetwork.co.nz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=18265"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}