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Unusual lymphatic/thoracic duct leak - help!

Posted In: Medical Stories 6 Replies
  • Posted By: Baffler
  • July 12, 2008
  • 08:57 PM

I have been experiencing symptoms over the last 2 years that, through many tests and the wonderful resources at the Mayo Clinic, has been diagnosed as a lymphatic or thoracic duct leak. This leak is not like any others that I have read about and has my thoracic surgeon baffled. The leak occurs sporadically - 2 times in 2006, 4 times in 2007, and once thus far in 2008. It starts with pain in my lower back near my spine which eventually moves around to my abdomen area creating a circle of cramp like pains. Sometime later (4 - 8 hours) I develop an instant swelling at the base of my neck on the left side (between the neck and the clavicle). This swelling gradually resides over 1 -3 days. While the swelling is residing, I have significant pain in my stomach area and my abdomen area, reduced when I am laying, increased when I am standing. I had an incident on June 12th and they ran a specialized MRI test on me (2 hours in the tube) which showed them great pictures of what was happening. There is a leak that is occurring in my lower back area and the chyle is moving up through my chest where it is somewhat hampered by organs, bones, muscles, etc. Once it gets up past my clavicle it is "released" into the soft tissue area at the base of my neck (hence the swelling). The chyle then travels back down and ultimately ends up in my abdominal area and is reabsorbed into my body. My team at Mayo has never seen anything like this, can't explain why it is happening, aren't sure why or how it heals itself (since it only happens periodically) and is not sure how to fix it. Has anyone ever experienced or known someone that has experienced anything like this?

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6 Replies:

  • We suspect that my wife has a similar problem. Her swelling is constant and over the whole body. The intensity varies from day to day, with chyle collecting under the skin and in the chest area. This results in a serious lack of breath. She has no pain, fortunately.My wife received a procedure where over 4 litres of chyle were removed from her lungs. The swelling returned at the same intensity a week later.The only thing we know was that the condition was brought on by an adult occurrence of mumps. We have not really received any proper diagnosis - noone seems to know where the chyle leak is and how to prevent it. We have not had an MRI scan yet.
    Anonymous 42789 Replies
    • January 22, 2011
    • 05:44 AM
    • 0
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  • It certainly sounds very similar to what was going on with me! Interestingly, I have not have not had an incidence since December, 2008. It seems to have just stopped. I also never had to have any chyle removed, it simply absorbed back into my body. I had mumps as a child so that wasn't what started my issues. In fact, we never could pinpoint a factor. I don't know where you live but the MRI/MRA scans they ran on me were specially designed by a radiologist at Mayo clinic in Phoenix, Arizona for this problem. They could see where the leak started but since the lymph ducts are so small, it was impossible to pinpoint its exact location. And, there are few doctors who specialize in the lymphatic system. I wish you both the best of luck and would love to hear from you with any updates. We suspect that my wife has a similar problem. Her swelling is constant and over the whole body. The intensity varies from day to day, with chyle collecting under the skin and in the chest area. This results in a serious lack of breath. She has no pain, fortunately. My wife received a procedure where over 4 litres of chyle were removed from her lungs. The swelling returned at the same intensity a week later. The only thing we know was that the condition was brought on by an adult occurrence of mumps. We have not really received any proper diagnosis - noone seems to know where the chyle leak is and how to prevent it. We have not had an MRI scan yet.
    Baffler 2 Replies Flag this Response
  • I'd be shocked if mumps actually started a lymphatic system leak but, of course, the big issue now is to stop the leak. Trying to condense my potentially 100-page story down to just a paragraph or two, I can add this to the dialog: The chyle leak in my "thoracic duct" began May 2000 but was not affirmatively diagnosed until I had a lymphangiogram in November 2001 by a radiologist at UCLA Medical Center. I actually watched the leak on a live x-ray on a TV monitor hanging over the bed while a dye flowed through my lymphatic system. A good surgeon should be able to close the hole using endoscopic surgical techniques. Unfortunately for me, my surgeon did a major slice-and-dice, leaving behind an 8" incision in my right side along with pain for the rest of my life. He basically tied a knot above and below the hole in the duct, and the leaking stopped. I asked, "How does the lymph fluid now get around my body?" His answer: "We don't know, but it does find a way." That's a bit unsettling, but I've been very healthy since the operation. I believe the original leak was caused by a traumatic event while I was sleepwalking, something I probably had never done before. I nearly jumped out of my skin when I awoke, on my feet, in another part of the house. A few days later, I had shortness of breath and cardiac arrhythmia. Odd symptoms continued for more than a year, then the leak grew and I started having a thoracentesis every two weeks to draw at least two liters of chyle from the pleural lining around my lungs. Sadly for me, I bought a rebounder, which is a small exercise trampoline, a couple of months ago, and after just a few days of great exercise, I started getting the same symptoms I had in May 2000. I have no doubt that I have sprung a new leak.
    Anonymous 42789 Replies Flag this Response
  • I'd be shocked if mumps actually started a lymphatic system leak but, of course, the big issue now is to stop the leak. Trying to condense my potentially 100-page story down to just a paragraph or two, I can add this to the dialog: The chyle leak in my "thoracic duct" began May 2000 but was not affirmatively diagnosed until I had a lymphangiogram in November 2001 by a radiologist at UCLA Medical Center. I actually watched the leak on a live x-ray on a TV monitor hanging over the bed while a dye flowed through my lymphatic system. A good surgeon should be able to close the hole using endoscopic surgical techniques. Unfortunately for me, my surgeon did a major slice-and-dice, leaving behind an 8" incision in my right side along with pain for the rest of my life. He basically tied a knot above and below the hole in the duct, and the leaking stopped. I asked, "How does the lymph fluid now get around my body?" His answer: "We don't know, but it does find a way." That's a bit unsettling, but I've been very healthy since the operation. I believe the original leak was caused by a traumatic event while I was sleepwalking, something I probably had never done before. I nearly jumped out of my skin when I awoke, on my feet, in another part of the house. A few days later, I had shortness of breath and cardiac arrhythmia. Odd symptoms continued for more than a year, then the leak grew and I started having a thoracentesis every two weeks to draw at least two liters of chyle from the pleural lining around my lungs. Sadly for me, I bought a rebounder, which is a small exercise trampoline, a couple of months ago, and after just a few days of great exercise, I started getting the same symptoms I had in May 2000. I have no doubt that I have sprung a new leak.My husband also had a thoracic duct ligation. They performed a double pleuradesis so that the chyle wouldn't get back in the plueral cavity. Did you also have that procedure done? Were you put on a low fat diet for the rest of your life? Are you experiencing any pain? Sorry for all the questions. Mary
    Anonymous 42789 Replies Flag this Response
  • My husband also had a thoracic duct ligation. They performed a double pleuradesis so that the chyle wouldn't get back in the plueral cavity. Did you also have that procedure done? Were you put on a low fat diet for the rest of your life? Are you experiencing any pain? Sorry for all the questions. Mary\Mary, how is your husband? Mine just had a pleuradesis and has a huge leak too.2 liters a day.
    providenza 1 Replies
    • November 19, 2011
    • 09:06 PM
    • 0
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  • I have the same synonyms....Mine happens much more though, like once every other week. I eat a low fat diet already. They are saying it is a blood clot and that the pain in my back and stomach is not associated with the swelling in my neck...however it always comes together, what have you found out about your condition?
    Anonymous 1 Replies Flag this Response
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