I was diagnosed with Nutcracker Syndrome over a year ago. What is this, was my first question. Some doctors don’t even know about this syndrome e.g. my GPs had no clue about it and unfortunately were not helpful enough. I started to search vigorously for any information and which doctor could help me.
Nutcracker syndrome (NS) is a condition that affects your left renal vein. This is the vein that carries blood away from your left kidney and back to your heart. Nutcracker syndrome is a type of extrinsic vein compression syndrome. In these syndromes, the structure of your blood vessels puts pressure on one of your veins.
If you have nutcracker syndrome, two arteries in your belly compress part of your left renal vein. This compression raises the blood pressure in your renal vein and forces some blood to flow in the wrong direction. As a result, nearby veins swell, causing symptoms and potentially leading to complications.
Researchers consider nutcracker syndrome a rare condition, but they don’t know exactly how many people have it.
There are more people with NS than we think. I decided to share my experience publicly because I know this information can help and, in some cases, safe lives. I suffered in the past from many health issues and now I see where some of them were coming from. The human body is an amazing and complex pandora. Many health issues have the same symptoms and make it difficult for doctors to make the right diagnosis. We have to know enough ourselves. Nobody will help us (even doctors!), if we won’t willingly want to help ourselves.
Fortunately, I was successful with my research and found a consultant who referred me to the right surgeon. There are different vascular surgeons out there; so you need the right one for this type of operation, if you need an operation.
Nutcracker syndrome may cause mild or no symptoms, and it may resolve on its own (especially in children). However, it can sometimes harm your body over time if untreated. Possible complications of unmanaged nutcracker syndrome include:
- Blood clots in your renal vein.
- Kidney damage caused by increased pressure in your renal veins over time.
- Male infertility or female infertility.
- Severe pain that interferes with your quality of life.
Nutcracker syndrome surgeries and procedures include:
Renal vein transposition – moves your left renal vein so it attaches to your inferior vena cava at a different location. This allows your renal vein to avoid traveling between your superior mesenteric artery and your aorta. Laparoscopic methods are an alternative to traditional open surgery.
Stent insertion – uses percutaneous (minimally invasive) methods to insert a stent into your left renal vein. This small tube helps open up your vein so blood can flow through it.
I had both of these procedures – open surgery when a surgeon moved my vein into a safe position and then inserted a stent. There is no surgeon in Ireland who can do such surgery. I had therefore to travel to London.
My symptoms for years were: low back pain, left side pain which travelled often to my chest and heart area, basically pain was everywhere. Now I know it was because of pressure and slow blood flow. I had seen a cardiologist, gastroenterologist, dietitian, gynaecologist and spinal consultant. Why a spinal consultant you may ask? When I was preparing to have surgery to treat NS, I received another diagnosis. Oh, yes, there is always a room for more unwanted surprises. Not more diagnoses please! I want to mention this as well because I believe partly it relates to NS as difficulties with blood flow can create problems in bones and joints too. So, I had to have neck surgery urgently. Again, GPs didn’t do enough to explore my neck and shoulders pain until I asked for a MRI scan. I believe that my past pancreatic issues could be also connected to NS because medical report shows that my left renal vein was trapped and hidden somewhere behind my pancreas.
Doctors can be confused too as we often bombard them with our symptoms. I learned to be patient and kept learning by myself from different but reliable sources. We can be overwhelmed with the information and diagnoses or more often (what stresses us) with the unknown. We often ask: What really gives me a problem? How to sort it? What doctor can help me? And when?? Doctors might not answer all the questions. We have to think and search ourselves too.
From my personal experience what helped me:
First of all, I started to slow down in everything; in thinking, in doing things, and socialising virtually (social platforms). Physically, I already couldn’t do much, so going out was reduced automatically. My weight dropped to 47 kg. Many women are trying to lose weight, I was fighting to keep it. I never was a fan of strict diets and would never recommend them to any woman. You should only consider them if you are clinically diagnosed as being overweight and need help. Just eating healthy is enough, but what is healthy? That’s a story for a book, not a post on the website. I was always a healthy eater, but from time to time, I went off the rails. We all do. The difficulties we have nowadays are with our food providers/supermarkets. In my opinion, there is more food which damages our health then benefits it. It’s up to us to learn and recognise which food is safe to eat.
My menu had many changes throughout the years. I had difficulties to figure out which food gives me a problem. I had many medical tests done and ended up with five diagnoses before the Nutcracker Syndrome and neck diagnoses dropped on my head. It knocked me down, but I didn’t have time to worry. I know from my past experience (I have been through tough times) that if I start to feel sorry for myself, I will lose it and welcome depression. I started to search about NS again and made more changes to my diet. That is a must! With NS, we have to eat carefully and little by little, to avoid pressure on the left renal vein which goes to our left kidney. NO to salty, smoky, spicy food. I stopped eating 4 hours before bed (still do). I drink water as much as I can in small sips during the day, but without pressure. I listen to my body. One day it could be 1 litre, another day more. Too much water or food in one go can create pressure in the body. There is more information on the internet about what to eat and what not to eat with NS, but listen to your body.
The next problem was with exercising. As I had no energy, sometimes even walking was hard – what exercise could I do? I already dropped gardening which I loved, but eventually my body gave up. Moving around, bending and lifting things was not possible for me. You will laugh when I tell you that on many occasions, when my husband Niall and I went for a short walk, we checked the weather first particularly to find out if it was going to be windy. I could be blown away easily with strong wind. Yes, I was that thin with my bones showing through my skin.
Just to clear a bit here. I lost weight not only because of NS, I had other issues before that. From my observations, NS probably created problems for me in other areas of my body which led me to lose weight. As we know, everything in our body is connected. Doctors might say “no, it’s not because of that” but we have to analyse what happening inside us by ourselves. Unfortunately, each doctor is looking at one particular problem he/she is specialising in and often they don’t look outside that box and don’t make a full picture of our health. An holistic approach is a rare thing in general healthcare systems. On the other hand, we have to be careful who we listen to and where we gather the necessary information. Even my post here is my personal experience. Somebody with NS can have a different experience. General information about Nutcracker Syndrome is out there on the internet. The rest is up to each of us, individually. Always talk to your doctor.
NS is difficult to diagnose. We can live with it for many years with no symptoms. Pain can come and go and we won’t even pay much attention to it or doctors would treat us for something else without realising where the root of the problem is. An abdominal CT scan with ink helped me. My blood tests were OK and GPs relied on them too much, but a blood test is not enough to find the problem. If you have a back pain (low back pain, left side from back to shoulders, pain around your heart, abdominal pain) for a long time, I would recommend you do an abdominal CT scan and look for an area around your left kidney/renal vein.
There is an option to avoid surgery. I was advised to have a protein drink every day. It helped me to gain more weight, but unfortunately it didn’t help to improve my health. That’s why I had surgery. Protein is important for us. Actually, it’s skinny people who suffer and get Nutcracker Syndrome more often than those who are not skinny. We need fat. Please don’t lose weight if there is no problem clinically. My dream is now to have more fat around my bones. We often see the right things when it almost too late. Try not to come to that situation. It’s not pleasant experience. I had two surgeries in one year and went through so many medical tests/scans, I wouldn’t wish anybody to experience. Any surgery is hard on our body and is the last thing any of us want. To avoid them, we have to look after ourselves well.
This type of surgery was tough on me (recovery from neck surgery was shorter and less painful) and with all the preparations I didn’t know how I would feel until it happened. Surgery was successful and I am recovering well. I was told it could take up to three months before I could come back to a normal routine and up to a year before whole body recover. The body needs time to heal.
The most important and hardest thing to do in any situation is to avoid stress. I had to learn the hard way how to do this. All our health issues start from stress. When I thought “that’s it” what is next? I turned to meditations. I started to read more and what surprised me, I started to collect my notes and came back to my first draft of what happened to be my debut novel. While I was waiting to be treated I focused on writing and it really helped me mentally. I would recommend to anybody who goes through a difficult time or has health issues, to read and write. Writing exercise is a very healing process. It doesn’t have to be a novel. Just a page of your story every day is good enough. Sometimes I am looking out the window watching birds or just observing the landscape around our house, I feel the urge to drop everything and write a short story of what I see right now. I do it just for myself, not for publishing and also it improves my writing skills. Meditations, writing, reading, walks in nature, classical music/pleasant melodies, slow living, healthy eating, good sleep, all helped me and I would recommend these exercises to everybody.
I learned that the best solution for all our problems is calm and stillness of our mind and body. We have too much pressure on our body and mind with all the modern technology and social media/platforms. Our brain collects and digests too much information each day and this affects our nervous system, breathing, digestion and overall well-being.
My deepest gratitude goes to medical team in London who was involved in surgery for Nutcracker Syndrome and after care; to my consultant in Ireland who sent a referral to London and to the lovely nurses who took care of me after surgery when I came back home; to my friends for their wonderful support via messages and phone calls. And, of course, to my darling, Niall, for his understanding, knowledge he shared with me, his loving care, love and Irish sense of humour. I couldn’t go through and be where I am now if not for Niall’s support in many ways.
I wish everybody a good health!
With love and gratitude,
Tatiana