This is apparently our payback for my posting earlier that the neck dissection was over and everything was great.....it's not. Contact dermatitis this a.m. on the incision, additional weeping of the drain sites, itching, one drain had been pulled and then the color of the fluid in the drains changed - now being told it may have something to do with triglycerides OR it could be a blown stitch, something leaking. H is going nuts as they are talking possible return to surgery. Also changing him to a medium chain triglyceride diet. What can any of you tell me about any of this? It is my understanding that this is not a common thing.

Cheryl, Im so sorry to hear your husband is struggling right now. I wish I had some info to help you but Ive not been thru this. Im sure there are many on here who can give you the info you are looking for. I'll keep you both in my prayers.

ok, looks like I'm gonna help answer my question here. What's draining is chyle from the lymph area. Two drains still in. Doc has put Mike on a medium chain triglyceride diet (MCT) which involves apparently a type of fat that does not excrete through the lymph system. So, we get sent home on Friday and he's told to take 6-7 T of MCT oil daily and drink 6-7 Breeze to keep calories up. Apparently none of this stuff can be bought outright so we had to order through pharmacy and will finally get it tomorrow afternoon. I spent all day Saturday calling places and checked three including a specialty place in Indy before heading home. (If I could kick the nutritionist's a$$ I would. No mention from her that we couldn't actually obtain the stuff we needed. And the print out about the diet she handed me was the same article I had shown her on the net.) Anyhow, in the meantime I've been shoving high calorie/no fat or low fat food at Mike and the chyle is changing color which I will take to be a good thing as it is no longer whitish looking. So far my research has shown that only 1 - 2.5% of persons having a neck dissection get this complication. I've seen varying reports on the ability of this diet to stop the drainage - everything from 50-50% to 90% success rate. When I ran a search on the site for this I found only 3 posts ever. If anybody else has ever run into this and has words of wisdom let me know. Thanks.

Hi Cheryl,
I've had two neck disections and been on this board since 5/2002 and I don't remember anyone having this complication. Usually the neck dissection is the easy part of the treatment. Sorry your husband has all these complications and hope he is feeling better on the new diet.

Take care,
Eileen

Cheryl I really do wish I could've kicked my nutritionists a$$ as well, add physical and occupational therapists to that list too. Sometimes it just makes me sick how much these people just don't care about what they do or the people they are paid to help.

I'm sorry about what you are going through, I don't have any experience with it. Good luck dear!

Doc appt. today. One more drain out, one to go. Finally got the MCT oil and the Breeze in today. Doc upped the steroid dosage. Contact dermatitis almost gone, eye is looking much better. The chyle has changed color and so we are pushing this diet until Friday when hopefully the last drain will come out and the staples out. What a fiasco! Mike is feeling much better at this point so that's good. He has a "bruised" facial nerve which is causing some pulling of his mouth but other than that, much better today than Friday. I don't begin to understand all this - but it was amazing to watch this fluid change color after he ate as little as 10 grams of fat in his supper. Go figure. Hope no one else has to put up with this complication!

Just tell them no more I had 2 characters trying to get a line into my spine for the last aneurysm surgery. I finally had to threaten to open a casn of woop ass and use it if they didn't go away. LOL It worked and then i got the Dr to talk to them using very plain english. Good old anesthesia works just fine.

If the facial nerve is bruised then the "pulling" can take a while to correct itself. They compromised my facial nerve and the pulling is permanent unfortunately. Glad Mike is feeling better.

More to add folks - I'm writing this so that the next person who searches for chyle leak has something to read about If I'm not sticking this in the right forum, please move to appropriate place. H's last drain was pulled on Friday. MCT diet was followed faithfully. This is Sunday and we're back in the hospital. Neck swelled a bit more each day (with each meal where any fat was ingested). By this morning neck was swollen and voice was croaky (for lack of a better word) and difficulty swallowing. Occasionally difficulty breathing - wheezy. Called the doc's answering service and explained situation and told them we were coming in as we live 2 hours away. Got to hospital and neck had to be drained -immediate relief from pain and voice changed, wheezing stopped and he is eating by mouth - drain is still in and dripping and surgery will likely be tomorrow to close thoracic duct where chyle is leaking. Back on IV antibiotics. Surgery is supposed to take approximately 2 hours and they will go back thru existing incision from the neck dissection. More as it happens........

Hopefully just one last note on this thread. Mike had surgery on Monday morning to repair the chyle leak. Was actually in surgery for 45 minutes instead of the 2 hours they thought it might take. Docs went back thru same incision and surgeon said is was obvious where the leak was as it was flowing. He said he "threw everything but the kitchen sink at it" meaning stitches, glue, mesh and something else. At present we are home, still on the MCT diet at least until Monday. Mike is feeling much better now, incision looks good and he's having no problems swallowing, talking, etc.