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Question about biofilm infection diagnosis

21 year old
Bi-lateral deafness, Cochlear implant on left side, right side placement failed due to infection
We live in Utah
Otherwise healthy

I am writing on behalf of my daughter as I desperately search for answers.

Sorry, this is so long, there is a lot to cover, and a lot left out.

Her 2nd Cochlear Implant was placed on March 8th, 2021, She never healed correctly from the surgery and began treatment for infection at the incision site shortly thereafter. The infection became so severe that her incision opened back up despite her being on oral antibiotics at the time. The wound was cultured and came back positive for Pseudomonas Aeruginosa. She endured some excruciating treatment attempts to close the incision and treat the infection. (oral antibiotics only at this time Augmentin and Ciprofloxacin). Her pain continued to get worse, she was unable to turn her head, raise her eyebrows, bend over, or brush or wash her long, beautiful hair because the pain was so severe. The Dr. kept asking her to give it some time. Her incision stayed closed, but a lump developed on her head and slowly grew. We were at the doctor's at least once every 2 weeks. I have always felt like I’m a good advocate for my children, and in this situation, I felt totally helpless. (Still do!)

I couldn’t understand why she wasn’t getting better, so I started researching I found a lot of information on biofilm infections which I had heard of before but didn’t know a lot about. I discovered that P. Aeruginosa is notorious for growing a biofilm. I am careful not to sound like an “armchair coach”, and I do trust her doctors, so I asked a few questions about the possibility that the infection had developed a biofilm. I was briefly acknowledged and dismissed. For months they kept asking her to give it move time. She just wanted the implant out. Her life stopped and she suffered extreme pain for 3 months. The only diagnostic test the doctors were willing to perform was routine bloodwork which came back normal.

On June 25th the implant was removed and the surgeon reported to me that they removed a large amount of infection, it took over an hour to clean it out. The surgeon said it was probably a biofilm infection, but didn’t feel the need to send the implant for further testing, even though I asked.

They took a culture that came back positive for a strain of P. Aeruginosa that isn't sensitive to oral antibiotics. They wanted to admit her but didn’t have any beds. I took her to the hospital where they placed a mid-line and started a 7-day course of Zosyn. My daughter was terrified that 7 days wouldn’t be enough and practically begged for a longer course even though she suffered a blood clot on the midline which required a 12 hour ER visit and black and blue arms from access attempts. Her team declined and treatment ended on July 17th.  The incision site and ear canal are healed.

For the past 2 weeks, her pain has slowly been coming back. It is bad enough now that it’s waking her up during the night, and brushing her hair is painful.

She doesn’t want to go back to her ENT doctor as she doesn’t trust them to believe or listen to her. She is terrified and I want to find a way to get some answers.

Are there diagnostic testing methods to find biofilm infections where there isn’t an open wound? If so, what are they?

Where can we get them performed?

Are doctors reluctant to talk about biofilm infections? Why?

Any advice or guidance you can give would be so appreciated! Any Universities or agencies doing research that might be able to assist, anything at all.

Thank you for reading!

TLDR; Infected Cochlear implant removed due to infection. Biofilm suspected, IV antibiotics administered, course completed. Symptoms of infection are resurfacing after 1 month. What tests are available to test for biofilm infection, and where can we receive good treatment?
Are doctors reluctant to talk about biofilm infections? Why?
2 Responses
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Avatar universal
i have had, umm, 14 rounds of antibiotics for my ear.  unfortunately they are missing two key factors causing the infection and they will not listen to me because ''they cannot see anything''.  they do not want to find the causes.   ENT doctors are full of themselves and condescending towards my intelligence and my knowledge.  here it is.  i had an ear swab get sucked into my ear.  it just disappeared with a huge pressure.  this was almost 2 years ago.  i broke it into 2 pieces trying to remove it myself.  that snap was louder than a gun shot.  one piece runs up and down beside my earlobe.  the other longer piece is buried somewhere further along the ear canal lodged in there.  it is very painful.  worse than that, i also have a multiple parasitic infection in my head and right through my entire body, including my toenails.

you said they removed the infection.  yes, they sucked out the infection that was under 3 teeth that had to come out.  now, the infection is under all my teeth.  this infection is alive and squirming, yet it is not named anything.  ignored, alone, and dieing.

my advice to you would be to get a magnifying app on your phone and focus on that infection.  learn life cycles and match your pics to help you find answers.  they do not care.  covid killed our doctors' spirit.  we are on our own.
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1415174 tn?1453243103
So sorry for your daughter being I'll. I would see an infectious disease doctor right away.  The laboratory has to test for sensitivity to the antibiotics. The Augmentin wouldn't work on Pseudomonas but ciprofloxacin can most of the time zosyn should work.  Can you get the results of the antibiotic sensitivity test? I haven't heard of a clinical lab test for biofilms.  It is research.  There are some strains that can be resistant to a lot of antibiotics.  So the Infectious Disease doctor should be able to help. Stay on this. Did she have a CT scan or something that would show it isn't deep in tissue maybe?
Hope this helps
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