My name is Evita Gamber. I am 22 years old, I am from Koblenz/Germany, but I study Maths and Physics in London. I love the sciences (especially quantum mechanics and cosmology), solving riddles and exploring hidden places.
Never having experienced any forms of major illnesses before, my struggle started in summer 2016. Months of pain and various other symptoms, starving and complete desperation followed, led to the diagnosis of vascular compression syndromes, surgeries and post-op complications/pain. An the journey isn’t over yet.
I suffer(ed) from
- vascular compression syndromes (MALS, NCS, MTS) - motility disorder - chronic abdominal pain - severe left flank pain - chronic nausea, vomiting - severe weight loss, malnutrition >>10kg - circulatory problems - severe weakness and fainting - irregular bowel habits - pain in my right leg ...and many other symptoms
The next step is to treat (again) Nutcracker syndrome.
In September 2016 everything started with abdominal pain. It was a really uncomfortable feeling at the same spot 24/7. Eating made it even worse as the pain became much sharper and it was added by heavy cramps. The doctors couldn’t find out what was wrong. I had several A&E visits, but nobody could help me with the pain. From Winter onwards, I also suffered from severe constipation, chronic nausea and very uncomfortable bloating and distention of my abdomen. I flew back to Germany and spent some weeks at my local hospital in Koblenz, but the typical tests (MRI, colonoscopy) couldn’t reveal anything. So I went back to London. The pain and nausea got worse and worse. At that point I already lost about 5kg and felt that I got weaker. In March, I flew back to Germany to a hospital in Hamburg which specialises in gastrointestinal illnesses. The tests showed that I suffered from a motility disorder, but they couldn’t find its cause. I started taking a drug, which should speed up the motility. The constipation got better, but not the pain and nausea. I barely managed my day. I spent my nights without sleep, laying in embryo position in the bathroom, vomiting and just hoped that I was soon over. I spent the days writing my exams in severe pain, chronic nausea, hungry and weak such that I collapsed a few times. I tried to eat as much as I could, but I lost more weight. In summer, I flew back to the specialised hospital in Germany. But again, the tests just confirmed the motility disorder without a cause and the medication didn’t help. It was summer, I wasn’t able to work, was in too much pain and too underweight to do my beloved sports, had to cancel meetings with my friends, wasn’t able to stay in public for long. In August, I had another stay at a hospital and an MRA could show a slight compression of my truncus coeliacus, suspected Dunbar syndrome/MALS (median arcuate ligament syndrome). We drove to a specialist in the diagnosis of vascular compression syndromes and during a duplex ultrasound scan he diagnosed me with MALS, Nutcracker, May Thurner, compression of the femoral veins, Vena Cava compression and a recommendation for surgery. At that time I wasn’t even able to eat two spoons of soup without pain, even drinking became difficult. Heavily underweight, malnourished and suffered from malabsorption. A diagnosis for an illness isn’t often relieving, but it was for me. I knew were the pain came from. Before a surgery I wanted to get a second opinion so I arranged another appointment and flew back to London to start my third year at uni. On the 3rd of November I went to Cambridge to visit the open day just to land in A&E again due to the feeling of numbness in my left leg. I consulted the specialist vascular surgeon I got recommended and was advised to flew back to Germany. Then everything went quite fast, I had the ‘big’ surgery on the 6th of November. I couldn’t wait to have finally no pain anymore. Now I am sitting here, after 15 months, still recovering from the surgeries, new and recurring symptoms, pain and nausea. The desperation forced me to agree to the surgery.
They decompressed the truncus coeliacus, resected parts of my diaphragm and solar plexus to treat MALS, transposed my superior mesenteric artery and sewed in a vein patch of my left groin to treat NCS and elongated my right iliac artery with the other part of the vein patch to treat MTS. That means they cut my stomach open, from my sternum around the navel to my lower abdomen open, put aside my intestines and transposed/elongated etc the vessels. Unfortunately, the elongation didn’t work, such that I needed another surgery in order to treat an occlusion of a blood clot in my right iliac artery. They removed the vein patch and inserted a PTFE graft. I was in unbelievable amount of pain. They sent me back to the ward. Due to a mistake in the heparin perfusor (I got a heavy overdosis of that blood thinner), I needed another life-threatening emergency surgery because of acute bleeding in the surgical area two days later. Recovery from such a big surgery where multiple compressions are treated at once is hard. The other two surgeries made it even harder. If you want to know more about vascular compressions, please look at the website here .
I returned to London in September 2018 to redo my third year.
As I still suffered from severe abdominal and flank pain and nausea, I consulted a vascular specialist here in London. Until December I was somehow able to manage the pain. Unfortunately, the pain and nausea increased again such that I was unable to gain any weight and started losing weight again. The left flank pain has worsened a lot. It feels as if someone is stabbing a knife constantly in my back. Furthermore, in autumn, I was still able to hike, now I get tired or I am in so much pain that I have to lay down after a few minutes of walking. After MRV/A, a duplex ultrasound scan and a venogram I was again diagnosed with Nutcracker Syndrome.
It is called Nutcracker Syndrome as the left renal vein becomes compressed between the abdominal aorta and superior mesenteric artery or between the artery and the spine. The symptoms can vary. For me, it is severe left flank pain, abdominal pain, nausea and chronic fatigue symptoms. Due to the pain and nausea I lost again weight, such that I am with 41kg again more than 10kg under normal weight.
A venoplasty without stenting and, if successful, an LRV transposition with patch grafting is planned with a surgeon from Imperial College London. Along with that a gastrointestinal and cardiological (for POTS) review is planned. Due to my severe weakness and the constant high pain level with several spikes per day, I cannot manage the day alone anymore. I visited the A&E several times the last two months. Unfortunately, the only solution for NCS is surgery. In January, my mum had to come from Germany to support me.
Update: The LRV transposition wasn't possible. I want to undergo another surgery, a renal autotransplantation, in the US. This method has been successful for many patients suffering from NCS/LPHS even with former other surgeries.
In the last 2,5 years we have spent tons of money on medication, medical tests (gastrointestinal, diagnosis of vascular compressions etc), transport to various specialists in Germany (including several times Koblenz-Hamburg, Koblenz-Leipzig, Koblenz-Köln) and the transport between London and Germany via plane, car and bus, accommodation near the hospitals, high calorie drinks (as a semi-liquid diet is easier to digest), special food diets, physio and psychological treatment (the past years, especially the time at the hospital after the surgeries were both, physically and mentally, exhausting.) In the past months I relied on the support of my mum. My student accommodation doesn’t provide enough space for us two and furthermore, we also have a (therapy)dog, Bo. Bo helps me a lot, he is still a puppy, but realises when the pain is much worse before anyone else does. As I tend to faint and my mother cannot be with me all the time, he takes care of me, when I am alone. Thus, we have to pay to rent (cheap) apartments in London, near the hospitals. I cannot walk far anymore, so she has to drive me to the hospitals and university, resulting in a big amount of costs for parking…and I could go on. I would be very grateful if you could read this, share it, raise awareness and maybe donate some money. Please text me if you want to transfer money via another method. If you have any advice for a short-term accommodation in London, we would be very grateful as well!
I am in pain every single second. If people ask me how I am, I answer ‘I am ok’ as I know it could be much worse, because it just got worse and worse the past 2,5 years. I am not ok.
Of course, a further surgery wouldn't be without risk. But I just want to have a normal life again, a life without pain.
Thank you to everyone who has supported me in the past few months, on a medical and personal level. There aren't enough words for my gratitude. I am lucky to be alive and will keep fighting every day.