Iris' Story

My name is Iris and I am 36 years old. Since birth I have had an abnormality called “predominantly venous malformation". I only found out that I have this specific condition in recent years. This is mainly down to the fact that vascular malformations are not well known and I had an odyssey of visits to doctors behind me before I finally came across Prof. Loose in Hamburg, who immediately offered me help.

It was only at around 12 years old that my parents and I established that there was something unusual about my left leg. Oftentimes, venous malformations occur in conjunction with ‘port-wine marks’ on the surface of the skin, however with me this was not the case. By contrast, my left leg had always been a little shorter and a little thicker than the other and I also had an unusually large swelling of approx. 5 cm in diameter and 3 cm in length on the arch of my left foot. At the time doctors assumed that this had been caused by malposition as an embryo. Therefore we initially thought very little about this anomaly. 

I remember that I never enjoyed sport as a child. The rest of my family were very sporty and I often felt like an outsider, including among fellow school pupils and friends. At the time no-one could give me an explanation of my condition. Because I had had this malformation from birth, I didn’t even know how it felt to move without discomfort. So from an early age, I tried to avoid sport and movement in general. For every time my blood circulation was stimulated, even more blood accumulated in my leg. My defective venous system could not reduce this build-up of its own accord. 

When the swellings in my leg increased painfully during puberty, we began visiting one specialist after another. After many examinations and having had various pictures taken of my leg, it became clear that the problem was rooted in the deep venous system. Other than wearing a compression stocking, no-one could suggest any other measures. At the beginning, the compression therapy did provide relief, but I also noticed that the pain and the strain got worse from year to year. When I was told that compression was the only long-term treatment method, I didn’t want to go on.

Until I reached 35 - so for a period of more than 20 years - I continually underwent examination by specialists, in the hope that someone could help me. Many of these doctors had never seen what I had on my left leg, and I was repeatedly told that there was nothing else they could do. I was often initially given hope of a treatment, however, these promises were always then retracted once the doctors had had a closer look at the findings or at the pictures of my leg.

The fact that I eventually found Prof. Loose at the age of 35 was no coincidence. I repeatedly told my story among friendship circles, and finally a friend of the family gave me the valuable information about a doctor with whom he was a friend. 

On 23 June 2011, the time came for my appointment with Prof. Loose in Hamburg. He suggested to me that my venous system could be reconstructed by means of a series of operations and that much of my pain could in future be relieved. Of course I could scarcely believe what he was saying to me. For the first time someone could explain to me what the problem was in detail, and how it could be corrected. He immediately gave me the feeling that I was in the right hands.

You cannot imagine what this doctor’s visit meant to me. After this appointment, the first thing I did was to sit on a bench in front of the Facharztklinik Hamburg, where Prof. Loose was meeting with patients, weeping for jo[RR1] y - overwhelmed.

Because, on account of his age, Prof. Loose now only works as a private physician, and I only have statutory health insurance, a short time later I was facing a completely different problem. The State Health Fund refused to pay for the surgery with Prof. Loose, without being able to demonstrate a genuine alternative to me.

Prof. Loose has extensive experience in various surgical techniques and is one of the world’s leading vein specialists. I have now got to know some other patients with the same clinical picture, who have also undergone surgery very successfully.

If there were greater understanding and more specialists in the field of venous malformation, who could detect what type of illness they were dealing with at an early stage, many patients could receive help during childhood. How much pain could be relieved or even eradicated for patients? According to Prof. Loose, the earlier this malformation is detected, the more successful the intervention.

In 2013, I underwent the first two stages of my surgery with Prof. Loose, which were very successful. My movement is much less restricted, with less pain and fewer problems. I no longer have any pain whatsoever when moving. For the first time in my life, sport and movement have even become something that I enjoy.

Incomprehensibly, I initially had to pay for the operations performed by Prof. Loose myself. The dispute over the costs has now been ongoing for two years, and has been pending before the courts for one year.