A few weeks ago, I also joined The Pectus Awareness and Support Foundation, at pectus.com The site is run by a 41 year old man who's had the Nuss procedure by Dr. Jaroszewski at Mayo in Phoenix, and at this writing, he is one year out post bar removal.  The cool thing about the internet is that community is found anywhere.  I have never met anyone with a hole in their chest, like I have. 

The site is patient-run, but does have a lot of information about surgeons who do the Nuss and the Ravitch and where to find them.  There is a system to rate the physician.  (Which has upside and downside, and should be taken with a grain of salt.)  (I'm a little wary of any type of "Angie's List for Doctors".)  The site has four or five different journal articles uploaded, and links to some webinars (which I also plan to link to). 

You have to be a member to get in and interact, which is good because people do post photographs of their chest.  Given that I have created this site several weeks ago, and haven't opened it up to ANYbody yet and STILL won't post a photo of my own deformity might tell you that I'm not the only one that doesn't want to share photos of my jacked-up chest with people who don't understand. 

I love the site, though.  Being part of the forums gives me the privilege to listen to other people's stories.  There are a handful of NPs on the site who work with pectus patients.  But they interact the way the best nurses trying to facilitate a support group...they contribute facts here and there that may be helpful, but it is a discussion among patients.  Because most pectus patients are teenage boys, there are many out there that are pretty freaked out.  But there are several people my age, too, who've been able answer my questions about their experiences.

I get that it hurts.  I don't underestimate that.  It is going to SUCK, I'm sure.  I don't ask, "Does it hurt?" but I do ask when people are able to go back to work.  How is their perception of their activity tolerance post-procedure vs pre-procedure?  (That being the golden question.)  Does it feel like you can breathe?  Are you still getting arrhythmias?

It's been a really great resource.  I know you can't believe everything you read on the internet.  But it's a nice community, and amazing to me sometimes how some people's posts affect me.  It's like, "holy shit!  That's totally how it is!"  And that's been pretty cool. 
/m

I received an email on September 29:

Hi Michelle,
 
I did your echo recently.  I met a patient today that I thought might be a great resource for you.  Her name is Tammy, she is a paramedic, and she had a NUSS bar procedure at the Mayo Clinic 6 months ago.  Unfortunately, she did not have a good experience, but she is aware of an alternative option at UCH.  She recommends Dr. Maguid, who sees patients out of our cancer center.  He apparently does a different type of surgical repair for pectus. 
 
I think it would be helpful to hear about her first hand experience before you make a decision to move forward with the Mayo.
 
Anyway, I hope you don't mind, but I asked Tammy if she would allow me to give her number out to a patient I met recently (you).  I encourage you to talk to her. (phone number)

Good luck!

Tracy H.

I felt so humbled and grateful that she thought of me.  And I did call Tami, and had a half hour conversation with her.  I'm also deeply grateful to her for her time.  She had a terrible experience with Dr. J. 

She is 50 years old, and she hasn't improved pain-wise and hasn't been able to go back to work (she's a paramedic) for eight weeks.  She said, "They won't take any accountability; they just keep telling me to go back to my PCP."  "I can't get off the pain meds; I'm miserable."  "I'm not the kind of person who needs or wants pain meds."  She said her pain comes from the fact that "her ribs are cracked, and they didn't even acknowledge that."

She told me her Haller was actually only around 3.0, barely at the 3.25 needed for most insurances.  I asked how she got the surgery approved, and she said "They must have fudged a bit."  There's nothing weird about that.  (If there's a patient who needs a procedure, and the physician agrees and the patient is suffering or the procedure is diagnostic to help the patient in the long run, I will happily find what is needed to get the procedure covered.)

She encouraged me to see Dr. Meguid at CU.  He works out of the cancer center, and he does a lot of general thoracic surgeries, emphasis, it appears, on cancer surgery.  She  says, "He says the Nuss in adults is torture; it should never be done."

I thanked her for her time.  I really am grateful for it. 

She's a paramedic.  I imagine that the medical/nursing world is something like what 14th century guilds in Europe were like.   There's a subset of this among nurses, and also a strong odd bond among people who work in critical care (which actually includes MDs, paramedics, ER techs and cath lab people).  You give your trust more easily to medical people.  You're part of the guild, the club.  So even though I've never met her, I'm inclined to trust that not only does she believe what she says, but also trust that she means to advise me well. 

She told me that there was a webpage about her story, and I found it (use the button below).

So I have been ruminating on it these past few days.