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Finally a Diagnosis: May-Thurner Syndrome

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After winding up in the ER in early 2019, I wrote a post about my year-long battle to discover the root cause of multiple mysterious symptoms. Below is a snippet of that post outlining two symptoms that have plagued me for some time. Last week I learned that those symptoms are caused by May-Thurner Syndrome.

But I still don’t know why my toes and the top of my left foot turn purple when I am standing or cold. My cardiologist said that my heart is not the cause. Multiple tests ordered by my vascular doctor have yet to diagnose my symptoms.

And there is an odd pain that I often feel on the left side of my abdomen. Both the endoscopy and colonoscopy that I had last fall revealed no known cause. A recent trip to the ER for severe pain in that region and in my back ruled out kidney stones. Though my appendix showed inflammation, the doctors could not diagnose my symptoms.

photo of my feet; left foot shows purple discoloration caused by May-Thurner Syndrome

What is May-Thurner Syndrome?

“May-Thurner Syndrome (MTS) is a mechanical problem that can increase your chances of blood clots. It is not an inherited or genetic condition. It occurs when the right iliac artery compresses the left iliac vein. This causes an increased chance of a deep vein thrombosis (DVT or leg clot) in the left leg.” (Source)

How was I Diagnosed?

It turns out that that trip to the ER last month, which revealed no diagnosis, was fruitful for two reasons.

  1. The cost of the ER visit consumed my health insurance deductible for 2019. Even though I ended 2018 feeling like I might never have answers, I now have no monetary excuse not to follow up with my doctors.
  2. While at the ER, I had two CT scans. The second included contrast as they were concerned with my appendix. In the end, I was sent home from the ER without a known cause for my back and stomach pain. Fortunately, my vascular doctor had access to this CT scan and could see the compression caused by May-Thurner Syndrome.

When I had my appointment with my vascular doctor’s assistant last week, I was not expecting to receive a diagnosis that day. I had already heard of May-Thurner Syndrome. In fact, I had asked about this particular diagnosis during my first appointment with my vascular doctor. She wanted to rule out other issues like Raynaud’s disease first, so I wound up doing several tests last fall that did not provide any answers.

My vascular doctor wants to perform a procedure called a venogram to measure the size of the compression. During the venogram, she will most likely stent the vein in that location with a stainless steel mesh to keep the vein open. If I have the procedure and receive a stent, I will have to have blood thinners for at least a month if not longer. My doctor will follow up with monitoring the vein several times in the first year and annually after that.

My leg and foot symptoms are much worse when my abdomen and back seem to be twisted and out of alignment. While my hope is that fixing alignment and posture issues might help, the reality is that I need to be willing to go the medical route to prevent blood clots and long-term issues with my veins. For someone who looks to nutrition to resolve health issues, that’s a hard pill to swallow.

Resources for May-Thurner Syndrome

I mentioned that I had heard of May-Thurner Syndrome prior to my diagnosis. That is because a friend who suffers from venous insufficiency added me to the Pelvic Congestion Syndrome Support Facebook group in the summer of 2018. In addition to that Facebook group, here are some other resources for information and support.