May-Thurner Syndrome

Wednesday, 24 November 2021

May-Thurner Syndrome

I had never heard of May-Thurner Syndrome until August this year. I was an active, reasonably fit, 45 year old Mum. So, when I couldn't walk one day, my world was turned upside down.

Just before taking the kids to a waterpark I had a slight twinge in my back. I thought nothing of it and carried on. We had such a fun time. Fast forward a few days and my back was getting worse. I believed I might have sciatica. I took it easy but kept moving.
Wednesday morning came and my husband was off to work at the office for the first time in weeks. I said I thought my back was bad and I was not sure if I could walk. He kissed me, said he would get some painkillers on the way home and I rolled over to get more sleep.Later that morning I tried to get up. I couldn’t walk properly. My left leg was really heavy. I shouted my eldest to tell him my concerns and he replied with “I’m not surprised as it’s swollen and a funny colour.”


I called the doctor and husband turned back home.I found myself with a next day appointment at a DVT clinic and on blood thinners as a precaution I wasn’t too worried as I still thought I had hurt my back and there was no reason for me to have DVT.It was at the DVT clinic that the nurse first mentioned May Thurner Syndrome. Her friend had had it and she told me not to worry. I had an ultrasound and the DVT clinic said I was ok. No clot. Just a sluggish vein at the top of my leg. But my D Dimer levels were high so I was told to come back in a week. (The D dimer level is an indicator to blood clotting.)  I was a bit annoyed. My walking was getting better and this just meant I had to cancel my trip to the spa with my sister. Which thanks to the pandemic was a year overdue.Anyway, I came off the thinners, started moving better and decided to head off to my father in laws for the weekend. I mean, it wasn’t a problem as I didn’t have DVT.We were meant to visit the sea side. I visited A and E. My leg had swelled, parts of me were blue. They poked me and said you need to go to a DVT clinic.So full circle I was back on thinners and after many phone calls and an out of hours doctors call I went back to the DVT clinic as planned.I already knew what was wrong with me. Or at least hoped. I felt the nurse on the previous visit was right when she suspected May Thurner syndrome. It had been dismissed by the ultrasound lady as I wasn’t pregnant. However, Dr Google was leading me down this route.I explained this to the ultrasound guy. “God Forbid it’s May Thurners” he replied. Then he found the clot in my thigh. “God forbid it goes all the way up here” he said going towards my belly button. His face said it all. I hobbled back to the DVT clinic trying not to cry.It was then full steam ahead. MRI within an hour. (Not the nicest procedure when you are 1 claustrophonic and 2. anxious. Breath in, breath out and hold your breath. It was a long 15 minutes of scanning.The doctor then came to see me with the news I already knew. I had May Thurner syndrome. I would have been born with it. My vein has been squashed between my vertebrae and artery in my pelvis. This had done damage to it and then caused the clot. I could stay on thinners forever or I could undergo an operation where the clot is removed and stent put in. With the latter the idea was that I may be able to come off thinners in the future and post thrombotic syndrome may be less. It wasn’t something they had much data on to show it was better. The decision needed to be made quickly as it’s only successful before the 2 week mark of clot formation.I changed my thinners and later emailed to say I would go ahead with the operation.It was then time to do a PCR and self isolate with the family until the day of the operation.The first procedure was to insert a catheter via my knee up through the clot. This would then allow thinner into the clot and dissolve it. I had to lay on my stomach while they did this and was awake. It was uncomfortable. I could hear him say that there was even clot in my calf by now. When done I needed to lay down for 24hrs attached to Flowtron boots that squeezed each calf every 15 seconds. I came out in pain. In my back. The Dr found this odd but said I could have IV paracetamol. Thankfully it did the trick. I was in the HMU and got very little sleep that night.


The next day it was time to see if the drugs had worked. There was no guarantee as I was borderline 2 weeks. Thankfully it had. Two stents were inserted to open up the damaged vein. I had loads of drugs and gas and air and was sent back to the ward to have the tiny cut squeezed for 15 minutes to help with the clotting.I am pleased to say that my leg is no longer swollen and I have no post thrombotic syndrome. I am currently on blood thinners with regular blood tests. It is hoped that I will be able to come off these in 6 months time. There is no guarantee and it may be for life. Either way, I feel lucky that I have come this far. Waking up one day and not being able to walk is scary. Not knowing if you may be in chronic pain for the rest of your life is too. It has been a warning of how life can change overnight and has made me realise that you shouldn't put things off as you never know whats round the corner. Ski trip 2023 here we come!

7 comments:

  1. How scary, I'm sorry to hear that you've been going through such a difficult time and I'm glad to see that you are on the mend. Thank you for sharing your story, I had never heard of this condition either!

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    1. Don’t worry most doctors haven’t either! I was really lucky to have an expert on it at my hospital!

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    2. Don’t worry most doctors haven’t either! I was really lucky to have an expert on it at my hospital!

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  2. Oh no! Sending hugs. It sounds like you've really been through it. It must have been so scary for you. I've not heard of May-Thurner Syndrome. Thank you for sharing x

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