Klippel Trenaunay and May Thurner

Every case of KT is extremely different. Some people have larger limbs, some people have smaller limbs. Some have extreme pain, and some have hardly any at all. Ulcers are common, so are blood clots.

My case is not nearly as severe as some of those I’ve seen in my support group.

I suffer in my left leg. I was diagnosed a little over a year ago. They found I had May Thurner as well, which they had to operate immediately on.

My case of May Thurner meant that my left Iliac Artery was so large, it was crushing my left Iliac vein. The Iliac Artery controls all of the blood that goes into your leg, and the Iliac Vein controls all the blood that exits the leg. Since my Artery was so large, and was crushing the vein, blood was going into my leg but not out of my leg. It pooled in my leg, causing massive swelling, pain, & blood reflux. First surgery was to remedy this. They installed a metal stent into my left Iliac Vein to keep it open so the blood would exit the leg. During surgery, I was able to opt out of sedation and watch which was really great for me because I directly saw everything they were doing. They didn’t have a stent strong or large enough mid-procedure, so had to go to the hospital next door during surgery to get one. This made me laugh! The stent was installed and I saw the INSIDE of my upper leg. The installation had a camera on it, it was very neat!

After this surgery we had hopes it would help my Klippel Trenaunay, but unfortunately for me it did not. While this surgery was absolutely necessary, now my lower surface leg veins were extremely large. The blood was going into the vein, but not out. The blood was going backwards. This is called refluxing. Refluxing felt like [to me] extreme burning sensations accompanied by cramps in my leg. They also found that my veins were creating veins, so blood was going NO WHERE.

The next step was removing the large veins. They removed some of my surface veins, in hopes that would help. Unfortunately again, this did not. Next surgery they had to go to my lower veins and remove a few of those. With a disease this rare and unique to each case, it’s really impossible to know what will work. I’m so lucky that my Doctor is just absolutely amazing. She explains everything to me in extreme detail, and is so positive that everything they’ve done will indeed help me in the long run.

Now I’m in a place where I don’t want any more surgeries, but may end up needing them regardless. I have to say it’s very frustrating. But again, my “therapy” is swimming and biking. Who can really say that?! These two things take my pain completely away. That is better than any medicine anyone can prescribe, and my Doctor loves that I’m doing these things to help.

I’m so thankful I found the amazing KT support groups I’ve found through social media where everyone shares their stories. I started to think, we should really start sharing these things with everyone, and not just each other.

I go back next week, and will update what the next steps will be!





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