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!

Blocking sweet taste receptors can help body fight off sinus infections

http://www.medicalnewstoday.com/releases/319372.php?utm_source=newsletter&utm_medium=email&utm_campaign=daily-us

Bitter taste receptors in the upper airway are a first line of defense against sinus infections, but their ability to kill harmful toxins and pathogens is blocked when the sweet taste receptors are also stimulated. While glucose and other sugars are known to Continue reading Blocking sweet taste receptors can help body fight off sinus infections

Patients with Severe Chronic Rhinosinusitis Show Improvement with Verapamil Treatment

http://www.newswise.com/articles/view/668018/?sc=mwhn

A clinical trial studying the use of Verapamil (a drug currently in use for cardiovascular disease and cluster headache) in alleviating chronic rhinosinusitis (CRS) with nasal polyps revealed significant improvement in the symptoms of this subset of patients. It is the first study of its kind to explore Continue reading Patients with Severe Chronic Rhinosinusitis Show Improvement with Verapamil Treatment

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

Announcing a Patient-Engagement Study for Women with CF about Their Experiences throughout the Reproductive Life-course

Written by Sandy Sufian, 48 year old woman with CF

I have recently had the great pleasure to join a diverse team of esteemed colleagues and researchers to finally explore a topic I have been passionate about for many years: how women with CF experience our reproductive lives Continue reading Announcing a Patient-Engagement Study for Women with CF about Their Experiences throughout the Reproductive Life-course

Mutations and What They Might Mean

Why did I go through the effort of finding out my CF mutations? I am a recipient of a bilateral lung transplant, I no longer have CF in my lungs and I am living post transplant now 16 years. So, what can knowing my alleles do Continue reading Mutations and What They Might Mean

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?

One more reason to exericse

My friends say I am a little excessive regarding exercise. And maybe I am. But aside from clearing my head, it helps to keep my sinuses clear. It also helps me cough out any stuff percolating in my lungs. But since I am a bilateral lung transplant recipient, my lungs (thankfully) are more clear than clogged with the usual CF gunk.

The way it works, I think, is, if I bike for about 30 minutes on my stationery bike, my sinuses seem less inflamed. But what I was told by my ENT is, exercise releases many things like endorphins and epinephrine, which reduces inflammation and makes it easier to for the our think mucus to drain or dislodge from our sinus tissue. Hence it can be removed more easily. I notice this is true after I exercise and do a nasal lavage, even if the lavage is 10 hours later. The days I bike or play tennis, the crud just comes out easier. Sometimes even in chucks–gross! And if I go in there with a Q-tip, even better. You didn’t hear that last bit from me though.

There are many times I am not motivated to exercise, believe me, but I do it because I prefer having clearer sinuses to taking antibiotics several times a year for chronic infections. To take my mind off of the task at hand I watch whatever can keep me pedaling. And really, a half an hour is not so long but decent enough to get some aerobic benefits. While they are not always immediate, it helps me feel like I am doing something to prevent future illness.

What are your tips about exercise?