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New here. Leak in the throat, a fistula

Josie60's picture
Josie60
Posts: 81
Joined: Jul 2012

I received my EC diagnosis (stage 3 with lymph nodes involved) in March. I have been through chemo and radiation and had a full esoughgetomy June 5. The stomach was resected into a gastric tube. About day 10 after surgery I developed a fistula just above the collarbone in the neck incision. My surgeon says this happens in less than 5% of his patients ( he does 2-3 of these surgeries each month) and will take about 8-12 weeks to heal on its own. He is doing weekly endoscopy to stretch the throat to insure any scare tissue does not form a stricture. The surgeon keeps telling me it's healing as expected and he isn't voicing any concerns..

Has anyone else have/had this problem? What has been your experience with the healing? I'm trying to be patient with the healing but it's slow and frustrating. I was rehospitalized for a week so they could open the incision and pack it while they monitored the fistula. The incision will now need to heal and fill in on it's own. Right now when I cough air escapes from the hole the fistula created. If I cough real hard, mucus is forced out of the stomach through the hole.

I am still on J-tube feelings and I am concerned about food getting lodged in the fistula channel and getting infected or something.

I will add that the biopsy on both the esoghus, stomach portion and the lymph nodes that were removed all indicated that the cancer had been killed, so at this time my oncologist and surgeon are both quite positive about my long term prognosis. I am hoping for several good years ahead of me to enjoy being retired.

monica_sss
Posts: 57
Joined: Dec 2011

Hi Josie,

My Mom had a similar experience. She doesn't visit this board personally but I forward things to her occasionally that I think she can relate to. I sent her your post and here is her reply:

I too had this problem 7 days after my surgery. No sooner was I sent home when I awoke to a ghastly odor. When I went into the bathroom, I noticed mucus oozing from the incision on my neck. We called the drs. office the next day to find out that this was normal. We covered the area but had to change dressings every 10 minutes. On Fri. my daughter called the office again and asked that I be seen. At this point, the infection was literally spewing from my neck. One look at this and I was readmitted for 7 days the same as you. One test showed where a hole was leaking from my neck. I also had the same procedure done whereas they packed the fistula. On top of that I was also not allowed to eat or drink anything for 4 days which lead to dehydration. Upon discharge on my 7th day, the nurses taught my daughter how to pack the incision and one of the nurses told me that eating protein is the best healing for these types of wounds. Long story short, yes it does heal up on it's own, I was discharged 4/20 and the incision was healed by Memorial Day. I did not have the stretching that you had during this but I did just go back in this past Fri for my first dilation. Eating can still be challenging but I keep a positive outlook and I sure do enjoy what I am able to eat. Best of luck to you. You've been through a lot. I too hope to enjoy many more years and look forward to my retirement in Feb, 2013.

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

I haven't had any leaks and I do not believe it is normal and would not feel comfortable if my surgeon told me just to wait it will heal up on its own. I was shocked to hear that you've had to go in for scopes to make sure your fistula doesn't close up with scar tissue. I have never heard of routine scoping to monitor and stretch for stricture post surgery. My surgeon claims that he has never had to do a stretch on any of his patients. I am seven months post surgery and no swallowing issues etc.. at all. I would look for a second opinion from a highly rated thoracic surgeon about your leak and the necessity to have the weekly scopes.

You don't say where you went for the surgery or who your surgeon is but if I were you I'd be headed to a major cancer center and searching out a top rated thoracic surgeon to get a second opinion. I wouldn't put up with this treatment plan for another day without getting a second impartial opinion.

Best of luck to you,
Dave

Josie60's picture
Josie60
Posts: 81
Joined: Jul 2012

The surgeon is monitoring the throat for strictures not the fistula, make sure scar tissue is not developing. If the leak hadn't developed he wouldn't be doing that.

This is through the University of Iowa Hospitals and Clinics and the surgeon is the department head of thoracic surgery. He spent several years at the University of Michigan with another surgeon developing a technique that greatly reduced the leakage rate on this type of surgery. I just happen to be the unlucky <5%. I feel very comfortable with my choice of surgeon. He does this a couple times a month and the hospital staff is well versed in working with esphogetomy patients. I was impressed all the way around.

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Thank you for clarifying that. U of M has a great reputation for their thoracic surgeons. Mine trained there in the THE.

Best of luck.

Dave

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