Consider contributing to CF Roundtable’s summer issue

Focus topic for Summer 2019 CF Roundtable:  ENT Problems and Sinus Disease

(Submissions due June 15, 2019)

Below are thoughts and questions regarding the focus topic to give you some writing prompts. Please feel free to write whatever you want regarding this topic and/or anything you think might help someone else with sinus issues.

General Questions:

  1. Do you have sinus disease or ear problems? Have you had treatments or surgeries that helped? Tell us how you handled your problems.
  2. If post-transplant, did your symptoms worsen or improve?
  3. If you are taking CFTR correctors/modulators (Vertex drugs), did your symptoms improve or worsen?

Sinus-specific

  1. Have you had sinus surgery? How many? Were they beneficial? Frontal obliteration? Removal of turbinates? Removal of polyps? Are you satisfied with surgery? If many, how long do they usually give you relief?
  2. Do you use any nasal lavages? Steaming? Antibiotic rinses? What kind? What do you find helps with your sinus disease other than medications or surgeries?
  3. Do you have post-nasal drip, mucus going into lungs? Coughing at night, inability to sleep without coughing?
  4. Do you have sleep apnea? Do you use a CPAP or BiPAP at night? Does it help with sleeping? Do you wake up feeling better or worse?
  5. Has your ENT or surgeon performed in-office procedures to open up closed sinus cavities or removal or polyps? What helped?
  6. Do you use any alternative therapies to help control your sinuses (e.g. colloidal silver, essential oils, etc.)?
  7. What’s your biggest obstacle in managing your sinuses?

Audioliogy/hearing-specific

  1. Do you have hearing loss (from antibiotics)? What do you do for this? Cochlear implants? Hearing aids?
  2. Inner ear, vestibular and balance issues? Did you try any therapies to help? How has this been treated and if so, did they help alleviate the problem(s)?
  3. Ear infections? Tubes in your ears?

Article submission requirements:

Article and photo requirements for CF Roundtable:

  1. Title
  2. Byline (how you want your name listed)
  3. Lengthis 750 to 1500 words and must be original (not previously published)
  4. Bio- at minimum it includes your age and where you live (city, state) and anything else you’d like to add, e.g. contact to your webpage or email; hobbies, pets, family, SO; If you look at past CF Roundtable issues, you’ll see the bio at the end of each article to give you an idea.
  5. Picture(s)- one high resolution picture (500K to 2MB in size, an unaltered, un-cropped smart-phone pic will do) to go with the article. We would also like an additional picture of you with your friends, family, pets or hobby, etc for our 4-color section. Include a caption (when, where or event) and the first and last names of anyone else in the picture.

Sample caption: Joseph Smith with his sister, Joanne Smith, in New York City.

  1. Article and pics would need to be emailed to the editors (Andrea Eisenman & Sydna Marshall). cfroundtable@usacfa.org

Holding Out for 3D-Printed Sinuses

By Sydna Marshall

I often suggest that I should model for the artist-rendering of worst-case scenario CF-sinuses. I’ve had countless sinus surgeries and my ENT (“Dr. E”) has tried everything along the way. Dr. E has opened up my cavities by cutting back some of the bone and membranes, he’s put a flap of sorts in the base of my sinus cavities to help the cheek cavities drain better. He’s fixed my septum and he’s removed a huge number of polyps in multiple surgeries, both under general anesthesia and at his office with local anesthetic. At Dr. E’s suggestion, I’ve also undergone the frontal obliteration. All of this, and my sinuses just plain suck. It’s the number one struggle I have as far as managing my CF.

A year ago, I decided it was time to just see him every two weeks to keep things flushed out routinely and help cut down on hospital time and/or IV antibiotics. Pseudomonas has plagued me for ten years now and just like Bob in the movie, What About Bob, my colonization won’t leave. It’s a resilient little bugger! Because my sinuses are so swollen, we’ve had to think outside the box when it comes to numbing methods before they get washed out in-office. Years ago, three sprays of lidocaine did the trick. Now, I get a spray of lidocaine followed by two gauze pads soaked in lidocaine, which sit in my nostrils for thirty minutes or so. After that, I sometimes get the numbing gel and/or a shot of lidocaine directly in my sinus membranes. Just last week we tried tetracaine, which helped tremendously. It takes roughly 90 minutes for everything to work before we can start the process of suction, extraction, and flushing with huge syringes of water. My favorite part of this whole routine is the immense relief when he extracts something with the alligator tool. It’s the very definition of instant gratification and I’ve spent so much time in his office that my husband bought me my own alligator tool to hang as a Christmas ornament on our tree. One of these days I’m going to ask to decorate what is now my plastic bowl for the rinses. Sydna’s Snot Bowl has a nice ring to it!

Many years ago, I upgraded from the sinus rinse bottle to a SinuPulse machine (think Waterpik for your sinuses) as they really need the extra oomph to power through the mucus and crusting from the infection. I highly recommend it if you’re struggling to get relief from the regular sinus rinse bottle. Over the years, I’ve tried it all: silver sprays, essential oils in my rinse, nebulized antibiotics with a sinus nebulizer, and manuka honey. The latest attempt is a compounded drug consisting of two antibacterial meds, an antifungal, and a steroid, which gets mixed in my sinus rinse along with Alkalol and manuka honey. So far, this seems to help tremendously.

So, what does severe sinus disease look like? It looks like routine visits and trying new therapies, often with little change in outcome and/or comfort. It’s an ever-evolving process and I’ve had a long time to accept that with the therapies available now, my sinuses won’t really get better, as I previously thought they would. Back in 2007 when I first started seeing Dr. E, I mistakenly assumed that one sinus surgery would fix my sinus issues and I’d be on my way to relatively normal sinuses going forward. In hindsight, that was a poor expectation on my part as a routine adenoidectomy at 11 led to my CF diagnosis with the discovery of polyps in my sinuses.

Meanwhile, I’m holding out for 3d-printed sinuses!

Sydna lives in Austin, TX with her husband and fur baby. She loves to read, is a part-time practicing yogi, and enjoys cooking!

Manuka honey sinus irrigation for the treatment of chronic rhinosinusitis

Manuka honey sinus irrigation for the treatment of chronic rhinosinusitis: a randomized controlled trial.

Int Forum Allergy Rhinol. 2016 Dec 9. doi: 10.1002/alr.21898.
Lee VS1, Humphreys IM1, Purcell PL1, Davis GE1.
BACKGROUND:
Manuka honey (MH) has been shown in vitro to be effective against biofilm-producing bacteria. This study assessed the effectiveness of MH for patients with active chronic rhinosinusitis (CRS) and prior sinus surgery. Continue reading Manuka honey sinus irrigation for the treatment of chronic rhinosinusitis

New Drug Shows Promise Against Severe Sinusitis

An experimental drug for the treatment of nasal polyps has shown promise in a small, preliminary trial involving a group of patients struggling with chronic sinusitis.
Dupilumab, which is injected, is aimed at helping those patients who do not Continue reading New Drug Shows Promise Against Severe Sinusitis

Sinus Surgery Again?

Yes, I just had sinus surgery again: my fourth or fifth in fifteen years. All were done post-transplant and were performed by my favorite and only ENT, Dr. Lanny Close at NY- Presbyterian.

There were a few reasons to have this surgery now. My last surgery was in October 2010. My head Continue reading Sinus Surgery Again?

Wind Sprint 45: Sinus Irrigation with Cystic Fibrosis

After six sinus surgeries, Jerry considers himself an expert on sinus irrigation and care. He suggests a number of techniques, including saline spray, a water pick, and Nasatouch. No matter what technique you prefer, irrigation in an important step in staying healthy and Continue reading Wind Sprint 45: Sinus Irrigation with Cystic Fibrosis

Sinus Solutions? By Andrea Eisenman

What can be done for sinuses that seem to get infected quite frequently? Oral antibiotics, IV antibiotics, nasal lavage, inhalations and lions, tigers and bears, oh my.

But seriously, aside from the easiest, oral antibiotics, which can wreak havoc on the rest of our Continue reading Sinus Solutions? By Andrea Eisenman

A solution to sinusitis from the sea

A team of scientists and surgeons from Newcastle are developing a new nasal spray from a marine microbe to help clear chronic sinusitis.

They are using an enzyme isolated from a marine bacterium Bacillus licheniformis found on the surface of seaweed which the scientists at Newcastle University were originally researching for the purpose of cleaning the hulls of ships.

 Continue reading A solution to sinusitis from the sea