View Full Version : Of DLBs, LTRs and second opinions ...
03-30-2009, 10:55 PM
Quick update on Sahana ... it's been a fairly uneventful winter, with mild resp./trach infections and allergies. Thankfully, we've managed to stay off the vent for 3.5 months now and have managed to stay out of the ER/hospital.
Sahana had a DLB today and we learned that her subglottic stenosis is very much there and probably worse than what the first ENT (the one who trached Sahana) had observed and led us to believe about 10 months ago. The new/current ENT who did the DLB, who came recommended consistently by each of the doctors we see, estimates about an 80% - 90% blockage primarily due to scarring (no granuloma or swelling due to reflux, etc.).
He's outlined a 4-step process over a 2 month period leading to decan, beginning this July:
1. Rib-cartilege grafting - anterior and posterior and stenting
2. Stent removal
While we believe our ENT's judgement, we feel this is a large enough decision to warrant a second opinion.
What's been people's experience seeking second opinions (we're thinking Dr. Cotton and team), providing the "second" ENT all pertinent records and pictures, handling egos, etc.?
03-31-2009, 12:51 AM
Tommy's ENT was trained firsthand by Dr. Cotton and many here on the board know him from his fellowship at Cinci. (Dr. David White) He consulted with Dr. Cotton many times where Tommy was concerned because Tommy had (in addition to his subglottic stenosis) a very rare birth defect in his esophagus preventing a correct swallow. So, pretty much our second opinion WAS Dr. Cotton in a round about way. We never sought out any other opinion because we felt we were in great hands.
I know many people on here have gotten an opinion from Dr. Cotton's team and from what I understand, it can be a bit of a wait, plus there is the travel to Cinci. If you're up for it, I'm sure it would be worth the time and travel.
The plan that you have outlined is exactly what we did with Tommy, except we added a couple short steps. After the stent removal, he had a PMV, a tonsillectomy, then the capping. Tommy had a 100% subglottic stenosis. We were told he would need two, possibly 3 repeat surgeries, but after the first one, Dr. White was pleasantly surprised to see repeat surgeries would not be needed.
I hope whatever the outcome, Sahana will be trach free by this fall! Congratulation on being vent-free. That is awesome!
03-31-2009, 01:51 PM
it's good to read that Sahana is off the vent and has had a relatively trouble free winter. This is a pretty tough surgery she faces and you are right to get a second opinion. good luck (sorry, I have no experience of this to pass on), just hope she can come through this and be decanned this year!:)
03-31-2009, 06:28 PM
We were in the same position awhile back. Here is what we did: we called Cincinnati and explained our position and gave extensive history. They talked to Cotton and he suggested that we come down for a scope. Adding to our complexity was that we were going to be repatriating back to the US at about the time that Parker was going to need surgery so we wanted to set up shop somewhere in the US and why not Cincinnati.
One thing you do in addition is inquire about a Cincinnati trained ENT that is local or more local to you.
I always think a second opinion is a good thing. Keep in mind though the expense of going somewhere like Cincinnati. If you decide to go ahead with procedures there you have several years of follow up. That can add up. Thankfully, we are a mere 5 hour drive now but it still adds up in both financial and time commitments.
03-31-2009, 10:57 PM
I think a second opinion is always worth it. If &/or when you do get a second opinion, make sure you understand there is more to all of this airway reconstruction than just the surgeon. You need to take into account where the patient will recover and the experience of the staff who will be taking care of your child post-op. Try to take a tour of the recovery ward in all the institutions you are considering. It's a package deal.:D
Good luck in your decision making process!
04-01-2009, 09:48 AM
We were fully prepared to get a second opinion and had everything lined up to do so. In our research, however, we discovered that our local ENT was in fact trained by Dr. Jacobs in Philadelphia, who was trained by Dr. Cotton. We also had an indepth 1 hour consult with our local ENT, with every question imaginable (compliments of the trach board;) ) and he answered every one, with confidence. The real deciding factors for us were his absolutely confident, supportive manner, when we stated we wanted a second opinion (not the least bit defensive) and the fact that Jacob is so well known at our local hospital by all the specialties and they absolutely adore him. This has made an incredible difference pre and post op.
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