Let’s Talk About Second Opinions!
Let’s talk about second opinions! How far do you go?
We actually moved our family from Virginia to Cincinnati to get Soraya the best care. We truly feel we’ve found that! However, that doesn’t mean that every one of her 15 sub-specialists have been the best interaction.
The toughest part (I imagine) of being Soraya’s physician is not having a diagnosis and having a clinical picture that is changing.
When Soraya used to walk and then became weaker in her legs, her geneticist referred to a neuromuscular physician. We met them, they ordered labs and muscle biopsy. The results (like all of ours in the past) were inconclusive.
Safi and I requested a care conference with the most relevant physicians on her team as we were wanting to discuss the big picture – we knew she was clinically changing.
Our neuromuscular doctor stated that they could not find a primary neuromuscular condition in Soraya and therefore did not need Soraya to follow up. She could try going to Mayo Clinic.
We’ll just say this sentiment wasn’t well received by Safi and I. Here we have a child that is changing in front of us and it’s impacting her muscles and this doctor won’t help us or even follow up?!
Fast forward 3 years…Soraya needs a ventilator and it’s obvious that this is a neuromuscular disorder. Our pulmonologist wants us to see neuromuscular at Cincinnati. No way. How could we go back when they didn’t care or listen?
So we decided we would only be seen by someone who was interested in helping and had her records to review to decide whether it was worth both of our times.
Off to the NIH! We went to Maryland and found that the neuromuscular doctor there agreed to communicate and work with a neuromuscular doctor in Columbus (much closer!!!).
The biggest factors that drive our decisions to seek further evaluations:
• How will the travel impact Soraya’s sisters?
• How would this evaluation add to Soraya’s current care?
• At what physical and emotional toll would this be for Soraya?
Overall, we already know we may not have answers – but we expect to be heard, cared for, and we want her doctors to walk through the unknown WITH us ❤️
How do you decide when to get a second opinion?