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NUTCRACKER SYNDROME (NCS)

top view of man lying in bed and suffering from stomach pain.jpg

This site is only for informational purposes. 

NUTCRACKER SYNDROME FEELS LIKE...

 ‘NCS feels like pain and pressure throughout the left side of my body that comes and goes and moves around all day, every day. It’s daily headaches. It’s constant pressure in my abdomen. It’s chronic fatigue. It’s an overall feeling that something is slowly robbing me of life.’  - NCS Patient 

WHAT IS NUTCRACKER SYNDROME?

Nutcracker syndrome is a condition where the left renal vein becomes compressed, leading to persistent and oftentimes debilitating symptoms. The type of NCS seen most often is anterior NCS, where the renal vein is compressed by the abdominal aorta and the superior mesenteric artery. In posterior NCS, the renal vein becomes compressed by the abdominal aorta and a lumbar vertebral body of the spine. Despite the presentation of the renal compression, the symptoms are similar in nature and vary in severity. 

 

The clinical symptoms of NCS are most often acknowledged by doctors as abdominal and left flank pain present with hematuria (blood in the urine), but specialists and studies are finding that there are many other symptoms associated with this compression syndrome. Symptoms reported by patients include:

 

  • headaches

  • coat hanger pain - cramping pain or constant tightness in the shoulders and back of neck

  • digestive issues and abdominal pain 

  • low back pain/flank pain, especially left-sided

  • symptoms associated with Pelvic Congestion Syndrome (PCS) 

  • urinary symptoms without sign of infection (urgency, pain, cloudy urine)

  • orthostatic intolerance or POTS

  • tachycardia

  • fatigue, some have incapacitating fatigue diagnosed as ME/CFS

  • wearing anything tight around the abdomen causes discomfort, bras especially

      cause discomfort; some are unable to wear them 

  • nausea

  • vomiting

  • bloating

  • pain during and after sexual intercourse; some cannot have sex due to NCS pain

  • vaginal pain and swelling

  • dysautonomia

  • left-sided swelling, from foot to shoulder or just in one area, like the hip or calf

  • some doctors believe that NCS affects only tall, very slim people; many patients who have been diagnosed with NCS do not fit this stereotype, NCS patients seem to be all ages, shapes, and sizes

Laying on Mattress

HELPFUL RESEARCH ARTICLES AND MEDICAL SITES

Research articles can be helpful and validating, but frequently there's not enough research.  This list is to help get you started.

 

Please note that we begin with wikipedia because it seems to be one of the most comprehensive places, besides scientific journal articles, to read about NCS on the internet.  As time passes more and more places are providing information about NCS, but you'll notice in many of the articles that I've shared below, even journal articles, that the authors don't share the same symptoms or the same available/recommended treatments.  I believe this is because the NCS standard of care/best treatment and even symptom list continues to evolve and be researched. 

 

If my NCS were not destroying my quality of life in 2020, I would have waited to receive treatment.  I felt like moving a kidney was extreme and hearing negative stories about all treatment options; I didn't know what to do.  I felt very overwhelmed.  After great deliberation, I chose an autotransplant; it continues to be a successful treatment for me with no major complications.  I have friends who are waiting for treatment because their lives are manageable, but also have many friends who have chosen treatment, some even donating their kidneys or traveling to Germany for surgery to relieve the terrible pain and pressure of NCS.  Deciding if and how to treat NCS is complicated and personal.  Notice that treatment is evolving.

 

When looking for research articles, it can be helpful to search other conditions you have and NCS to see if they are related. If you are specifically concerned about the treatment, it can be helpful to search that specific treatment.  Check with your local library if the articles you need aren't free.  Google Scholar is helpful and has a lot of free resources.

GETTING A DIAGNOSIS AND TREATMENT

If you think you have may have NCS, use this info to get to the right doctor or ask your primary care doctor to order the imaging.

  • The type of doctor you see will be determined by which treatment you choose.  A kidney transplant surgeon does an autotransplant (type of treatment) and a vascular surgeon preforms other types of procedures and sometimes directs NCS treatment with other specialists.  Because treatment is emerging, it does not seem to be standardized. 

  • Ask your doctor how much experience they have treating NCS and find a doctor in your area that is familiar with it. Look in the NCS Facebook Groups listed below for recommendations of doctors in your area who specialize in treating NCS.  Doctor knowledge is key to getting a proper diagnosis due to the misconceptions of NCS and lack of awareness of the full list of symptoms.

  • NCS is generally diagnosed with CT or MRV with and without contrast. The gold standard of diagnosing the degree of the renal compression is done via venography and intravascular ultrasound (IVUS) to measure the pressure gradient.  Before finding a specialist, especially if there isn't one in your area, you could ask your primary care doctor to order the CT or MRV.  A diagnosis through one of these tests would cause you to take the next step, a venogram/IVUS. 

  • If you have symptoms that match NCS, but it does not show up on your imaging, it could be important to have a specialist familiar with NCS review your imaging, double-checking for the renal compression.  Many people in the NCS Facebook Group have reported finding the compression themselves, and then by a specialist after it was missed by a radiologist unfamiliar with NCS.  I went to Germany for my initial NCS and MALS diagnoses because I had such a difficult time getting a diagnosis in the US; the doctor I saw said I wasn't tall enough or thin enough to have NCS.

  • Because NCS can often exist with other abdominal compressions, it is imperative that a full workup and adequate imaging be done prior to treatment.  Patients find that having veins removed or blood flow changed when there is another vascular compression present can increase pain dramatically.  Patients have reported that having a hysterectomy and/or getting an iliac stent before treating NCS caused an extreme increase in pain and other symptoms.  Some, not all, who treated NCS previous to treating MALS see an increase in MALS symptoms after treating the NCS compression.  Many believe that the vascular system needs to be treated from the top down, like plumbing; others disagree, and believe that the compression causing the most suffering needs to be treated first.

  • It is important to find a surgeon who is well versed in the diagnosis and treatment of NCS.  It is especially important that the doctor be familiar with the treatment outcomes of their other NCS patients, complications that could follow the treatment, and the possibility of other vascular compressions affecting the outcome of your procedure.

  • Deciding when, how, and if you treat NCS is a personal decision.  For many cost, availability, and being desperate for relief affect the procedure they choose.  Others are able to/have to travel across the country/world for treatment.  It is important that you can trust the treatment that you choose either after speaking with your doctor or through your own research on the internet.  Read my story about choosing a treatment for NCS here.

Look at our pages on SMASPelvic Congestion SyndromeMay Thurner Snydrome, and MALS if you think you may have other vascular compressions. Other pages of diagnoses that co-occur with NCS include hypermobility spectrum disorders, POTS, ME/CFS, Fibromyalgia, and Deep Gluteal Pain Syndrome, and CSF Leak

Doctor Operating CT Scanner

IN THE NEWS

Many people share their stories because it was so difficult to get a diagnosis.

FACEBOOK GROUPS FOR NCS

It can be helpful to connect with others about their experiences.  You can ask about doctors in your state, how their treatment went, compare symptoms, and get support from others who understand what it's like to have NCS.

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  • Try to join groups with the most members to give you a larger sample size and a higher probability of finding someone with symptoms like yours. 

  

  • Remember that Facebook is public and follow the group rules. 

  

  • Go to this page for more helpful hints on using Facebook as a resource.

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