My Condition and the Road to Treatment
Monday, September 13, 2010
Monday morning- surgery day. Four year old Drew is overnighting at Aunt Lisa’s for a few days. He’s known for awhile that September is the “mumph” that mommy will have nose surgery. “We’ll have to be gentle with her and she won’t be able to talk very much at first… no ‘kip lisses’…, but she’ll feel better in October.” According to daddy, upon arriving in Belvidere yesterday, he bounded out of the car- eager to get his first big boy spend the night adventure underway. Early reports tell us that he’s riding the gator, he’s visiting cows and pigs, playing in the dirt with his cousins and he’s loving farm adventures.
We dropped Blaine off at school at 8am and immediately Tommy and I are headed to Vanderbilt. Surgery is traumatic enough in itself, but I joke that a trip downtown without makeup or hair product can be equally traumatic.
Wondering why I am here? I don’t really have a choice. According to the CT scan, there is an infection that won’t drain and negative pressure in my left maxillary sinus cavity. This will eventually cause the sinus cavity under my left eye to collapse. If it collapses, my eye socket will follow. I intend to grow old gracefully, but let’s draw the line at facial deformity. In addition, I’m having migrane type headaches, can barely breathe out of my nose, and I am exhausted.
I have never really been able to breathe and I never really cared to notice. Until lately, I have found ways to function around the issue and perform at a relatively high level. Example: in 2007, I had a newborn baby and a kindergartener, took my growing consulting business independent, and served as Board Chairman of one of the largest Habitat for Humanity affiliates in the world (during a period of record growth). It was both exhilarating and exhausting. I roared through 2008 & 2009 with equal gusto and somewhere along the way I got really tired…. really, really tired. I thought that it was my body telling me to slow down and take it easy, so I did… I cut out every extra activity possible on my busy agenda… amped up my workouts… but I was still exhausted. And I suddenly noticed that I was working and playing and managing the family through daily headaches and nasal conjestion and a general, miserable fog.
In May 2010, I was ending a very large, high profile project and decided to take a month off. I took three amazing young boys to Disney World for eight days as my last spur-of –the-moment hurrah and then visited Vanderbilt’s ASAP program to get an allergy/sinus assessment on May 21. This is officially the first time I have ever attempted to get treated for sinus issues… I always just assumed that I was ‘allergic to everything’ and my condition only recently became unbearable. Within 3 hours of my visit, I had allergy test results (only allergic to mold, mildly) and was looking at a CT scan of my sinuses. We can see what appears to be a sinus infection in the left maxillary sinus, and as legend now has it, the largest concha bullosa that they have ever seen- greatly inhibiting my breathing and likely contributing to the headaches. The ASAP docs give me some nasal sprays, an irrigation bottle with instructions to irrigate twice daily, steroids, and antibiotic. I am told to come back in a month for follow up. It is likely my anatomy causing the issues, but we should give meds a shot to solve the problem before we sign up for a complicated surgery. If things aren’t better in a month, I’ll need to see an ENT.
One week later, I call Tina, my PA at Vanderbilt ASAP, and tell her that I am absolutely miserable and my headaches have become unbearable. She and I both agree it’s likely an anatomy issue and it’s time to go ahead and schedule the ENT visit. She refers me to Dr. Duncavage who can’t see me until June 30.
I go ahead with my ASAP one month follow up appointment on June 25. The follow up CT scan reveals that the left maxillary sinus is WORSE even after steroids and antibiotic. There is now negative pressure in the cavity. Tina and I agree that we did the right thing by scheduling the ENT appointment. She pats me on the leg and says, “You know that I look at a lot of noses… and… your poor nose…” I agree to keep her posted.
I see Dr. James Duncavage a few days later. Duncavage is a nasal sinus disease specialist, a Vanderbilt professor, and considered one of the best. Here’s an article on Duncavage http://www.mc.vanderbilt.edu/reporter/index.html?ID=1220. The first thing that he said to me when I saw him in June: “Most people in your condition are only able to sleep sitting up in a recliner.” He says that I have no room to breathe, there’s no way that I am sleeping, and the headaches are likely migranes from lack of sleep. He writes ‘silent sinus syndrome’ on a business card and tells me to google it. He explains the likelihood that the maxillary sinus cavity (the one under the left eye) will eventually collapse, and that surgery is the only option. He and a room full of students send a camera wand up my nose, marveling at the size of the concha bullosa, etc.
Duncavage tells me that I likely have nasal valve collapse as well and wants to refer me to Dr. Ries. I hear the words ‘plastic surgeon’ and I cringe. He emails Ries’s nurse immediately…asks her to call me to schedule an appointment. Duncavage insists that if Ries needs to treat the nasal valve collapse, he’ll also do the septoplasty.
I leave Duncavage’s office with a sheet of paper that has checkmarks beside the following diagnosises: deviated septum; hypertrophic turbinates; chronic maxillary sinusitis; concha bullosa; nasal congestion; vestibular stenosis. The following operative procedures are also marked: nasal septoplasty; computer assisted, stereotactic image guided surgery; submucous resection inferior terbinates- right and left, concha bullosectomy- right and left, endoscopic maxillary antrostomy; possible nasal vestibular stenosis (referred to Dr. Ries). I note that about half of the list of available operative procedures are selected for me. This seems like a lot.
I left with a folder full of paperwork- what to expect after surgery for all five procedures. I was overwhelmed, but I already knew three things from this first meeting with Duncavage: 1. Our next meeting would be pre-op; 2. I had no choice; 3. I was in the care of the right person.
I saw Dr. William Russell Ries a few days later in his Vanderbilt office. Here’s a write up on Dr. Ries http://www.mc.vanderbilt.edu/reporter/index.html?ID=2035 As it turns out, Ries will perform the septoplasty for my deviated septum and nasal vestibular stenosis. You can google these terms to find out more, but I’ll oversimplify nasal valve collapse/ nasal vestibular stenosis for you: I need permanent breathe right strips installed inside my nose to make it work. This will alter the appearance somewhat, but it should still be my nose. I’m obviously nervous about this idea. I understand that he will have to cut my nose externally to do the procedure and I’ll have recovery much like that from plastic surgery. This is a hugely invasive process. He examines my nose and then pulls up the CT scans. “You really don’t have any room to breathe… and that’s the ‘good’ side… yes, this is a very large concha bullosa… it’s curved around like you have an elf’s shoe shoved up your nose.” I leave his office with a couple pages entitled ‘What to Expect After Septoplasty/ Repair of nasal vestibular stenosis’ and ‘Home Care Instructions for Facial Plastic and/ or Reconstructive Surgery.’ I stop by the surgery scheduler’s office on the way out on the off chance that I can secure a surgery date- I am very nervous about all this but I am also miserable. September 13 will be my surgery day.
I realize that I need to take some drastic measures if I am to continue to work and function anywhere near normal until September 13. I collect all of the information on my condition and decide that the best that I can do is try to keep the tissue in my nose from swelling as much as possible and get plenty of rest. For the remainder of the summer, I avoid all outdoor activities and almost anything that will make me hot. This is drastically different than my normal routine, but the entire family realizes it is temporary and we make it work.
Pre-Op, Surgery Day
Duncavage tells Tommy that his wife has never been able to breathe, and gets caught up in reviewing the CT scan with him to show him where the problems are and what is to be done. I can tell that Tommy is graciously nodding through a dictation of medical terms, and that’s okay because I have done the research and I follow most of what Duncavage says. He tells us that a few folks will be observing today and his ‘five year’, Dr. Chris Mantle, will be assisting. I tell Duncavage in prep-op that I have also googled him; I ask him if he knows that he’s “world renowned.” He smiles.
Ries comes in and begins almost immediately evaluating my nose- he’s poking around it and I can tell that he is beginning to sculpt it. To repair the nasal valve collapse, the lower portion of my nose must be widened. He says something about angling up the tip of the nose. I tell him to go ahead and shave off as much of the hump as he can since he has to shave it for the septoplasty anyway. I begin to babble, and he seems slightly annoyed that I am still not sure what my nose will look like after this. “Didn’t we go over it? You want YOUR nose, but a variation that works, right?” I agree and that’s the end of it. He continues again to poke around, talks through some of the sculpting verbally to Dr. Mantle, and examines the nose. I decide to trust him and his skills.
He reminds us that Tommy must do everything for me for the first few weeks, that I am not to lift anything over 2 lbs, keep my upper lip still, stay away from anything that could injure my nose (rambunctious 4 year old), etc.
Dr. Mantle comes in and talks to us about post surgery care. He mentions a cast on the nose. “Are you the five year?” I ask. He nods affirmatively. “This is the first that I have heard about a cast on the exterior. I’ve heard about stints on the interior.” He informs me that I will have both. Wow. This is more invasive than I thought.
The Operating Room
I have the surgical report, I have read it thoroughly and googled terms like Killian submucous resection and Metzenbaum swinging door procedure. I’ll be happy to share if you are interested. Here’s an overview of my procedures:
Duncavage performs the computer-assisted stereotactic image-guided surgery, bilateral resection inferior terbinates, bilateral concha bullosectomies, and left endoscopic antrostomy with tissue removal. It went as expected EXCEPT the infection expected in the left maxillary sinus was actually a large CYST instead. This CYST was according to Duncavage the reason my sickness escalated.
Next up, Dr. Ries performs the repair of the vestibular stenosis via open approach with septoplasty and speader grafts placed. The cartilage would be harvested from the nasal septum. My septum was deviated to the left with a large spur posteriorly on the left.
“I... bruise... easily.” These are the first words that I recall speaking as they wheel me out of surgery. I can’t make out all of her words, but the nurse seems slightly alarmed about my appearance; a male voice says something about this being a regular occurrence in young, female patients. I assume it’s bruising, but I find out later that it’s a strange bump on the top left forehead- something to do with the anesthesia.
“Socks... off.” This is my next recovery room sentence.