Chyle leak- Complication

jennie813
jennie813 Member Posts: 3
HI- i just wanted to post about my Thyroidectomy experience- Because it was rare and there was hardly any information out there for me. last April I had my thyroid removed do to a small cancerous tumor. I also had 80 lymph nodes removed- 8 were cancerous. At the age of 29 it was a pretty rough experience, especially because I was getting married 4 months after my surgery. The worst was after the surgery- the normal 2 night stay at the hospital turned into 7 nights due to a .05 chance of a Chyle Leak. When i finally did leave the hospital i had to have that bag hang off my neck for an additional 2.5 weeks. Just wanted to put it out there- if this happens to anyone- please feel free to ask me about my experience.

Comments

  • amorriso
    amorriso Member Posts: 185
    What is Chyle
    First - I hope you are doing well. I have never heard of a Chyle leak...what is it?
  • songsmithp
    songsmithp Member Posts: 2
    chyle leak
    I too had a chyle leak after a Dec. neck dissection for recurrent thyroid cancer. The RAI 2 times did not work to kill the cancer so I had surgery to remove lymph nodes. The chyle leak required 3 Jackson Pratt drains in my neck and the surgeon went back in to tie and stitch the thoracic duct because the chyle would not stop.It took two extra surgeries and then it stopped.It was scary to see that white milky stuff but it has stopped after about 2 months. I am told the chyle finds a way to get back into the blood wherenit belongs. Please let me know if yoy are doing better. Richard
  • Baldy
    Baldy Member Posts: 243
    amorriso said:

    What is Chyle
    First - I hope you are doing well. I have never heard of a Chyle leak...what is it?

    Hi amorriso,I haven't been
    Hi amorriso,

    I haven't been here in a while. Hope you're doing well.

    Did you have a neck disection as well as a thyroidectomy? If so, the surgeon should have talked to you about the possibility of a chyle leak. The thoracic type can be caused when a neck disection removes lymph nodes near the thoracic duct in the neck. It's uncommon, but does happen. The problem is the stuff that leaks is full of nutrients and a person with the condition can become seriously malnurished and possibly dehydrated as well.

    Alan

    PS I need a better picture of the cat. Done.
  • amorriso
    amorriso Member Posts: 185
    Baldy said:

    Hi amorriso,I haven't been
    Hi amorriso,

    I haven't been here in a while. Hope you're doing well.

    Did you have a neck disection as well as a thyroidectomy? If so, the surgeon should have talked to you about the possibility of a chyle leak. The thoracic type can be caused when a neck disection removes lymph nodes near the thoracic duct in the neck. It's uncommon, but does happen. The problem is the stuff that leaks is full of nutrients and a person with the condition can become seriously malnurished and possibly dehydrated as well.

    Alan

    PS I need a better picture of the cat. Done.

    leaks
    Ok - I did have a neck dissection, but I dont remember him mentioning that..though he could have. I made a good recovery with no complications so I guess it wasnt a factor.

    Doing well now - had another good checkup - one year from my last RAI - fingers crossed it stays that way!

    Oh - I like the cat!
  • Baldy
    Baldy Member Posts: 243
    amorriso said:

    leaks
    Ok - I did have a neck dissection, but I dont remember him mentioning that..though he could have. I made a good recovery with no complications so I guess it wasnt a factor.

    Doing well now - had another good checkup - one year from my last RAI - fingers crossed it stays that way!

    Oh - I like the cat!

    Chyle Leak
    Now that I think about it, he didn't bring it up, I did.

    It was on the release form I had to sign {along with 2 or 3 dozen other possible complications} before they would do the surgery. He handed it to me and I read through it and asked him what it was. I guess if you don't ask, they don't explain, even though they probably should. Just another example of being your own advocate and questioning everything.

    I bet when he saw me start to read through the release form, he heaved an inward sigh and said to himself, "This is going to take longer than I'd like."
  • jennie813
    jennie813 Member Posts: 3
    Baldy said:

    Hi amorriso,I haven't been
    Hi amorriso,

    I haven't been here in a while. Hope you're doing well.

    Did you have a neck disection as well as a thyroidectomy? If so, the surgeon should have talked to you about the possibility of a chyle leak. The thoracic type can be caused when a neck disection removes lymph nodes near the thoracic duct in the neck. It's uncommon, but does happen. The problem is the stuff that leaks is full of nutrients and a person with the condition can become seriously malnurished and possibly dehydrated as well.

    Alan

    PS I need a better picture of the cat. Done.

    Drs
    Even though the Doctor - briefly discussed the chances of a leak - he said it was such a small chance- like .5%
    I could not believe it happened to me- I had a drain for weaks- sewed to my neck- That scar is worse than the Thyroidectomy/neck disection scar.
  • NLMCEM
    NLMCEM Member Posts: 50
    amorriso said:

    What is Chyle
    First - I hope you are doing well. I have never heard of a Chyle leak...what is it?

    What is chyle
    As part of your treatment, you are to follow a very low fat diet for 1 to 3 weeks
    or as directed by your doctor. Your goal is to eat as little fat as possible and no
    more than 20 grams of fat per day. Eat and drink only fat free or very low fat
    foods and beverages. The small amount of fat allowed in your diet should not be
    eaten in one serving. Try to spread the little fat in your diet out over the day.
    If this diet helps your condition, your doctor will tell you when you can start to
    add foods with fat back into your diet. If your condition does not improve, your
    doctor will talk to you about other treatment options.
    What is chyle?
    Chyle is a milky fluid that contains lymph and fat. It is made in the small
    intestine during digestion. Lymph is a watery fluid that carries nutrients like
    protein, salts and sugar. The lymphatic system sends chyle into the blood stream
    to nourish your body. This system also collects extra fluid from your body to
    return it to the blood and helps your body fight infection.
    How can a very low fat diet help?
    If there is a chyle leak, the chyle can build up and cause swelling and other
    problems in your body. The leak may happen after an injury or surgery to the
    chest or neck. Cancer of the lymph nodes, called lymphoma, can also cause a
    leak.
    When fat is reduced in the diet, the body makes less chyle. With less chyle, there
    is less fluid to leak into the body. The leak may heal and stop the problem.
    Special Instructions
    Talk with your doctor and dietitian about taking a multivitamin and the
    use of protein and calorie supplements. It can be hard to meet the nutrition
    needs of your body on this very low fat diet.
    the above is from a pdf file from http://medicalcenter.osu.edu/Pages/index.aspx
  • happidad
    happidad Member Posts: 1
    Chyle Leak
    I had my second neck dissection surgery at Stanford on August 20th and had a chyle leak. Had the hang bag and no fat diet until September 12th. The doctor told me of the possibility. All cancer was removed and the next step is external beam radiation. Good luck to all.
  • jennie813
    jennie813 Member Posts: 3
    NLMCEM said:

    What is chyle
    As part of your treatment, you are to follow a very low fat diet for 1 to 3 weeks
    or as directed by your doctor. Your goal is to eat as little fat as possible and no
    more than 20 grams of fat per day. Eat and drink only fat free or very low fat
    foods and beverages. The small amount of fat allowed in your diet should not be
    eaten in one serving. Try to spread the little fat in your diet out over the day.
    If this diet helps your condition, your doctor will tell you when you can start to
    add foods with fat back into your diet. If your condition does not improve, your
    doctor will talk to you about other treatment options.
    What is chyle?
    Chyle is a milky fluid that contains lymph and fat. It is made in the small
    intestine during digestion. Lymph is a watery fluid that carries nutrients like
    protein, salts and sugar. The lymphatic system sends chyle into the blood stream
    to nourish your body. This system also collects extra fluid from your body to
    return it to the blood and helps your body fight infection.
    How can a very low fat diet help?
    If there is a chyle leak, the chyle can build up and cause swelling and other
    problems in your body. The leak may happen after an injury or surgery to the
    chest or neck. Cancer of the lymph nodes, called lymphoma, can also cause a
    leak.
    When fat is reduced in the diet, the body makes less chyle. With less chyle, there
    is less fluid to leak into the body. The leak may heal and stop the problem.
    Special Instructions
    Talk with your doctor and dietitian about taking a multivitamin and the
    use of protein and calorie supplements. It can be hard to meet the nutrition
    needs of your body on this very low fat diet.
    the above is from a pdf file from http://medicalcenter.osu.edu/Pages/index.aspx

    I was on  a complete non fat

    I was on  a complete non fat diet for weeks and they tried the old school pressure bandages as well. Nothing worked for me and the leak was very inconsistant each day. Eventually the doc just took it out and hoped for the best. Told me to watch my neck and make sure it didnt swell up with fluid and it didnt! 3.5 weeks with a drain was the pits! good luck to all!

  • Jeweleeboo
    Jeweleeboo Member Posts: 1
    Chyle leak

    Well I just had a supraclavicular lymph node "packet" removed Thursday. Was going great until last night & my drain turned milky white. :(  Jennie, what did you have to do? They did a compression bandage last night & I now have a fat free diet. Did that with for you ? It wad weird enough to relapse street 25 ca free, but to have this very rare complication too? I feel like an over achiever!  I hope you're doing well!!

  • jlevy
    jlevy Member Posts: 1

    Chyle leak

    Well I just had a supraclavicular lymph node "packet" removed Thursday. Was going great until last night & my drain turned milky white. :(  Jennie, what did you have to do? They did a compression bandage last night & I now have a fat free diet. Did that with for you ? It wad weird enough to relapse street 25 ca free, but to have this very rare complication too? I feel like an over achiever!  I hope you're doing well!!

    Chyle Leak: Minimally Invasive Procedure to Stop the Leak

    Hi Folks.

    My father is a cancer survivor and had successful surgery, which resulted in a chyle leak as a complication.  The dietary treatment worked for a while, but the chyle came back.  The ultimate solution was through the Department of Interventional Radiology, which performed a lymphangiogram and embolization.  This means they used a new procedure (ie invented around 2005) to run a thread up his lymphatic system, taking images as they went, until they spotted the source of the leak.  Then, using the same thread-tool, they injected the leaky spot with material that embolized the opening.  This is a technique often used to seal leaks in arteries and veins.  It took 3 separate procedures, each of which was successful, before all the leaks were closed.

    The surgeon as well as my father's PCP had not heard of this procedure.  We found it online and sure enough, they do it in many, many hospitals through the Dept of Interventional Radiology.

    Everyone should be aware of this procedure, especially since chyle can cause physical "wasting away" which mirrors cancer symptoms.  In addition, a chyle leak can cause the organs that are depleted of nutrient to "light up" in a CatScan and make them seem to have metastatic cancer when they don't.  After the procedure, my father's CatScans stopped lighting up.

    I wonder how many people are told they have a recurrence of cancer when they actually just have a chyle leak that can be treated with this new procedure.  Please look into this if you or a family member has a postoperative chyle leak.

     

    -Josh

  • Sharky2580
    Sharky2580 Member Posts: 1
    jlevy said:

    Chyle Leak: Minimally Invasive Procedure to Stop the Leak

    Hi Folks.

    My father is a cancer survivor and had successful surgery, which resulted in a chyle leak as a complication.  The dietary treatment worked for a while, but the chyle came back.  The ultimate solution was through the Department of Interventional Radiology, which performed a lymphangiogram and embolization.  This means they used a new procedure (ie invented around 2005) to run a thread up his lymphatic system, taking images as they went, until they spotted the source of the leak.  Then, using the same thread-tool, they injected the leaky spot with material that embolized the opening.  This is a technique often used to seal leaks in arteries and veins.  It took 3 separate procedures, each of which was successful, before all the leaks were closed.

    The surgeon as well as my father's PCP had not heard of this procedure.  We found it online and sure enough, they do it in many, many hospitals through the Dept of Interventional Radiology.

    Everyone should be aware of this procedure, especially since chyle can cause physical "wasting away" which mirrors cancer symptoms.  In addition, a chyle leak can cause the organs that are depleted of nutrient to "light up" in a CatScan and make them seem to have metastatic cancer when they don't.  After the procedure, my father's CatScans stopped lighting up.

    I wonder how many people are told they have a recurrence of cancer when they actually just have a chyle leak that can be treated with this new procedure.  Please look into this if you or a family member has a postoperative chyle leak.

     

    -Josh

    My daddy is struggling please help

    Hi there, my dad had his gal bladder removed almost four months ago and since then he drained about 20 to 25 liters of fluid a week. He has been to three hospitals so far the second hospital sent him to another hospital as the surgeon there was supposedly good. And so far he is the most helpful but at the moment he doesn't know what to do he has had a small surgery to locate the leak and that failed and then they did a major surgery to go in and try to seal off the leak which to our surprise didn't work either doctor says he has a chyle leak and it's tricky because he isn't sure what to do now. He had two draines in and apron removing the second drain they discovered that the first drain is now over 3 liters a day. His next step is to go for radiation treatment. He is on a low fat diet and he is wasting away as he used to be a big man. He has been in icu for over three weaks and I'm getting worried that they won't be able to fix him. Doctor says its tricky as he also has liver cirrhosis. Any ideas would greatly be appreciated please.. Please help. What can be done and how do we stop the leak so he can finally go home and live a normal life?

    thanks for your time.

  • marysmith2
    marysmith2 Member Posts: 1
    edited April 2017 #14
    jlevy said:

    Chyle Leak: Minimally Invasive Procedure to Stop the Leak

    Hi Folks.

    My father is a cancer survivor and had successful surgery, which resulted in a chyle leak as a complication.  The dietary treatment worked for a while, but the chyle came back.  The ultimate solution was through the Department of Interventional Radiology, which performed a lymphangiogram and embolization.  This means they used a new procedure (ie invented around 2005) to run a thread up his lymphatic system, taking images as they went, until they spotted the source of the leak.  Then, using the same thread-tool, they injected the leaky spot with material that embolized the opening.  This is a technique often used to seal leaks in arteries and veins.  It took 3 separate procedures, each of which was successful, before all the leaks were closed.

    The surgeon as well as my father's PCP had not heard of this procedure.  We found it online and sure enough, they do it in many, many hospitals through the Dept of Interventional Radiology.

    Everyone should be aware of this procedure, especially since chyle can cause physical "wasting away" which mirrors cancer symptoms.  In addition, a chyle leak can cause the organs that are depleted of nutrient to "light up" in a CatScan and make them seem to have metastatic cancer when they don't.  After the procedure, my father's CatScans stopped lighting up.

    I wonder how many people are told they have a recurrence of cancer when they actually just have a chyle leak that can be treated with this new procedure.  Please look into this if you or a family member has a postoperative chyle leak.

     

    -Josh

    Chyle leak

    Hi Josh,

    My husband had a neck dissection (and tonsillectomy) 2 weeks ago.  24 hours after the surgery his neck swelled up, and the chyle leak was discovered.  He has been on the JP drain with a pressure dressing every since, but the leak isn't slowing.  He is scheduled for the procedure you had this coming week.  

    Have you experienced any side effects from the procedure?  We have read that lymphadema swelling in the extremities may occur.. have you experienced that?  Any other side effects?

    We have our consultation Monday with the Interventional Radiologist who will perform the procedure.  Any questions you can recommend asking (beyond the basic ones)? 

    Many thanks for any input you may have, really appreciate it!!

  • visionquest2017
    visionquest2017 Member Posts: 1
    edited May 2017 #15
    Chyle leak

    Had a diagnosis of thyroid cancer that spread to my lymph nodes and had JP drainage for a week and now removed. My neck is swollen and most often I feel pressure on my trachea and sometimes cramping of muscles around the area. I know that the swelling is normal according to surgeon but Im worried about the pressure on my throat. I am also on a fat free diet that i'm following dilligently. Not to mention that it is hard to sleep at night because of positioning. any suggestions?

  • Michael119
    Michael119 Member Posts: 1
    Chyle Leak

    Had Modified Radical Neck Dessection to remove lymph nodes on the 22nd of March and was about to be discharged when Chyle Leak was discovered. Was sent home with a drain that promptly clogged up and ended up swelling up like a balloon in my neck. Fluid was draining ot of the sutures on my neck so they removed old drain and installed a new one. That one worked for about 3 days and then clogged like the other. Have been on the ultra low fat diet for over a month now and am giving myself shots of Octreotide three times a day in the stomach. Have developed a fistula in my neck that has finally stopped weeping. Have to fill it with a gauze cording every morning and I don't see any chyle in the stuff that comes out. Am hopeful that the surgeon will take me off this diet tomorrow so I can eat some of the things I like. I have lost 25 pounds since starting this chapter of my life and really don't know how much more I could lose. For anyone that is going through this know that you are not alone. This has been one of the most difficult things I have ever had to deal with. I am exhausted by the end of the day, and always hungry. My saint of a wife has done her very best to find and make things that I can eat and still stay within the parameters of the diet but they are limited as you all know. 

    I sound like I an complaining and that may be true but the only advice I can give is to stay strong and try to keep your temper under control. Those around you didn't sign up for this either and are all just trying to help, 

    God Bless you all.

     

  • janiakjq
    janiakjq Member Posts: 1 Member

    Hi My son is going they this right now The Dr removed his drain but he is still leaking Chyle so he remains on the no fat diet and is losing weight quickly and is so weak. It’s been a month since his first neck surgery. And before that he was doing chemo and radiation for Nasopharyngeal carcinoma