• ​​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 SMAS, Pelvic Congestion Syndrome, May 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.