Next steps: opinions
Dr Christina Yang, NYU (pediatric ENT surgeon) – video consult 11/21
Approach
She said she wanted to “see for herself” that E’s tonsils and adenoids are small, that laryngomalacia is gone, and that there’s tongue and epiglottic collapse happening during sleep. She also did not want to rule out that tracheomalacia is present, given the expiration symptoms. She recommended:
Bring E into office for an awake endoscopy AND a pulmonary function test with pulmonologist
Schedule a procedure for them to repeat DISE as well as a bronchoscopy at the same time (propofol – twilight sedation again)
DURING the diagnostic procedure, they’d confirm or deny the presence of tracheomalacia (for medical management) and “fix what they found” in the upper airway – whether that’s supraglottoplasty (any kind of airway reconstruction), epiglottopexy, tongue-base reduction, etc.
My concerns
Putting Elsie through an awake endoscopy after the last one was so traumatic (and nothing was found, when she’s healthy and awake)
Repeating DISE after we already paid for it and put her through it!
Doing a bronchoscopy “just to know” whether there’s also tracheal collapse when Dr Vicencio explained that even if she has some degree of tracheomalacia, we’d just continue to manage it with Atrovent and no surgical interventions
Main concern is that they would decide on and conduct surgery in the same session as diagnosing issues – no time for us to understand what they found, or get on board with their surgical approach, or research whether she/they are the right team for that type of surgery.
Dr Vikash Modi, Weill-Cornell (pediatric ENT surgeon) – in-person visit 12/4
Approach
Like Yang, Modi advocated for “starting from zero” and doing all evaluations from scratch as a comprehensive aerodigestive team: “The problem is that you’ve gotten individual opinions, in siloes. You haven’t had one whole airway clinic evlauate her.” Excuse me, sir, we went to CHOP! Their airway clinic blew us off! “Yeah, that doesn’t surprise me. They only care about extreme cases.”
He wants to scope her in office with GI and pulmonologist present, then bring her back for a drug-enduced (gas first, then IV) upper and lower airway endoscopy AND potentially also a GI scope, if the GI specialist feels it’s warranted (since her issues are exacerbated by acid and she does have a reflux history). He didn’t think Scheid seemed qualified and couldn’t validate that her approach to DISE was “correct” because her notes in the report were limited and he “wouldn’t trust the video even if you had it.” He felt “there’s a right and wrong way to do a DISE” and suspected she did it wrong, especially since she “wasn’t part of an academic hospital” and he “knows everyone in this field but I’ve never heard of her.” Re: the idea (from Vicencio and Phinizy) that even if she had tracheomalacia, they wouldn’t do anything and would just continue giving Atrovent and wait til she grows larger, Modi felt that was incorrect, and he’d want a bronchoscopy to rule out vascular rings or cysts or other causes of expiratory stridor from the trachea.
My concerns
He was pompous, unfriendly, and judgmental (re: Scheid)
Reviews about him are really mixed – skilled surgeon who avoids surgery unless necessary, but a total asshole, with several accounts of him being not just unfriendly but actually rough physically with kids during exams
Dr Maresh (part of his team at WC) was the first ENT we saw, and the first to totally blow me off and not investigate or believe us.
Starting from zero! Again!
Dr Eric Gantwerker, Northwell Health (pediatric ENT surgeon) – in-person visit 12/18
Approach
Nice guy, read my site and printed reports before talking to us. Like the others, his mind immediately went to tracheomalacia, and he wanted to figure out for sure if it’s a tracheal problem (but he thinks it is) – specifically, bigger issues like trachael rings or vascular rings or cysts or anything else pressing on the airway. Said that the sudden onset nature of the problem could occur with rings, as one day the airway would grow enough to be restricted by them, but also admitted that the surgery for that is “major” and often they just monitor the problem if it exists. He explained that a high Mallampati score as well as tongue and epiglottic collapse and OSA are all issues that affect inhalation, not exhalation, and the exhalation is the main clue that the issue is most likely tracheal. He asked if we had done XYZ diagnostic procedures, asked why Scheid hadn’t included a bronchoscopy during DISE, but he didn’t shit on her and he didn’t discount her report. He didn’t seem surprised that the BiPAP titration wasn’t tolerated and caused more exhalation issues. I also loved that he was fine with me collecting opinions from a range of doctors before deciding what to do, and he said, “I have no ego! Feel free to talk to as many people as you want, and go with whomever you think is best.” To which I said, “So far, that’s you!” He seemed really curious about wanting to find the explanation, and said that since it’s been 3.5 years of this, “we have to treat this like a zebra” because all the other docs have treated this as a by-the-book case, but Elsie’s symptoms are not by the book.
For next steps, he wants to take a conservative approach and do imaging first – an airway flouroscopy, then an esophagram (with contrast but not barium) in consultation with Dr Maria Santiago, the Bechanecol study lead and head pulmonologist, before she retires this summer. At that point he will do some kind of in-office endoscopy with a high res camera (there’s some name for this procedure) and they will decide if/when to do a combined upper and lower endoscopy. The goal is to rule out more serious causes, establish definitively whether tracheomalacia is the issue or not, and then develop an appropriate treatment protocol.
My concerns
Modi and Yang warned me to stop seeing docs in isolation and knock out an eval at an airway clinic where ENTs & pulms & GI work together; Dr G is referring us to Dr S, but ostensibly I’d guess they’d work together if an upper/lower DISE was indicated.
The drive! 1:30 there through SI and BK, and 3 fucking hours back! It hurts, man. So we’d need to strategically schedule labs and follow-ups so they all occur in the same day.
I’m unclear on next steps: he said we knock out the imagining and the appointment with Santiago on the same day, but I was left wondering whether she’d immediately see those results or not. He also didn’t specify if we should follow back up with him after imaging. So I might try to do the imaging in Manhattan (he said it should be a place that works with kids) and then schedule follow-ups with him and Santiago in the same day.