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My DVT/May-Thurner Syndrome Story for ClotCare.org

DVT and May Thurner Patient Story from Phyllis Hayes

Phyllis Hayes
Posted July, 2012

In 2005 I was standing in front of my TV doing some Yoga stretching when I felt a sharp pain in my left groin. It went away and I forgot it. The next morning my leg felt “different” and my calf was a little swollen, but I had a busy, active day which included mowing the front yard, and I ignored it, even when it was painful to walk on early that evening. I always mow in jeans, so I was shocked to see a deep lavender and very swollen left leg as I stepped into the bathtub.

I called my son, a PA who lives out of town, and he said, “You’ve got a DVT. Call someone to take you to the ER now and don’t rub it.” I couldn’t reach anyone so I drove myself, and later could barely limp into the ER. The Doppler showed “echogenic material with the common femoral vein extending into the junction of the greater saphenous vein and the superficial femoral vein and the popliteal vein with poor compressibility at all levels. No spontaneous flow is identified.” It was diagnosed as an “old” clot that just got around to showing itself.

During my four days in the hospital, I received the standard Lovenox and warfarin anticoagulation treatment. I stayed on warfarin for six months and was diagnosed with “mild to moderate post DVT syndrome” and wore the RX compression stockings for over a year, then only when traveling. Everyone thought the 81 mg of aspirin daily would keep me out of trouble, but no one mentioned a rare and little-known anatomic “oddball” know as May Thurner Syndrome.

Five years after this DVT I noticed varicose veins in my pelvis. When I asked my doctor about it, he replied, "If it’s not causing you any problem and you have no pain, let's just watch it." Two years and two months ago, the veins really buldged and I noticed a lump about the size of a nickel in my left groin and pain in both groins. I went to my internist right away and she ordered a pelvic CT scan and a lumbar MRI for my back pain. When the reports came in, the radiologist who read both procedures told my internist to have me see an Interventional Radiologist. When I met with him, he told me two things: I have May-Thurner Syndrome (named after the two doctors who first observed this condition in 1957) which caused my 2005 DVT and that it involves compression of the left iliac vein by the right iliac artery. Additionally, he said it was treated by placing a stent/s in the left iliac vein, a procedure done by either an IR or vascular surgeon.

Ironically, while waiting to schedule the stenting procedure, I ended up in the hospital with another left leg DVT less than two weeks after meeting with the IR! At the hospital no nurse, no doctor had a clue to what this strange thing called May-Thurner is all about. Now I’m back with my hematologist, also unfamiliar with MTS, who is working to get my INR up to an appropriate level for stenting. He prefers to wait three months. In the meantime, the pelvic pain is almost unbearable from time to time. At first I was very upset that none of my health care professionals, other than the IR, even considered MTS when no apparent reason was discovered for the first clot. Since doing massive amounts of research on MTS and joining a support group, I’ve been informed by a medical expert in this area that it’s estimated that MTS is responsible for only 2-5% of venous disorders. Still, many “victims” have suffered needlessly for years with no diagnosis and treatment. The word needs to get out about MTS, and I’m doing my best to do this.

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Saturday, April 29, 2017