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Author: Subject: Introduction/Acquired Restrictive Thoracic Dystrophy
harmony
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[*] posted on 4-7-2017 at 03:51 PM
Introduction/Acquired Restrictive Thoracic Dystrophy


Hi Everyone,

This PE message board rocks. I feel like I've finally found my peeps. :)

Here's my story thus far...

At 4 years old I had 2/3 removal of my right lung due to a congenital deformity. It was called sequestered lung syndrome, and basically it was getting infected regularly, so out it came. While I was at UCLA recovering from this surgery, the surgeon suggested my parents also address the cosmetic fix of my PE. After what I'm sure was a very challenging decision, they agreed that it would be best for me to go through life without ridicule, so I had the surgery. I only have a few memories of the recovery. Maybe that's a good thing!

All my life I can only remember struggling with exercise. Every doctor I saw said it was in my head because the existing partial lung would have expanded to fill the space. When I was 18 one doctor even said I wasn't trying hard enough when she had my use a spirometer. She basically kicked my out of her office. Ay ay ay. Even though I mentioned the PE surgery every single time, no one ever mentioned that could contribute to my breathing struggles.

It wasn't until now (at 48) that a doctor finally ordered a CT scan. My Haller Index on inhalation is 5.5. Between scar tissue in my right lung and my heart being pushed into my left, my gas exchange is only 32%.

After learning that Dr. J no longer performs surgery with patients with my history, I went to see Dr. Lee at UCLA. He noticed my rib cage is tiny (I'm certain it is due to my early surgery), I have slight PE with some scar tissue behind the sternum, and my spine is pushing inward. My heart and lungs are being squeezed from all sides. He says he wouldn't do the surgery, be cause the sternum is pretty close to straight. The improvement would only be slight and not worth the risk.

Other than that, I'm a super healthy life-loving person who just wants to breathe! My exercise tolerance is getting worse and worse. I used to be a personal chef, but now even the thought of lugging bags of groceries and cooking gear exhausts me. Now a walk around the block or two is about all I can do.

I'm grappling with accepting that this is just how life has to be and searching for a solution. I really want to be hopeful, but the last month has been a roller coaster of emotion. I feel like Dr. Lee saying surgery is a bad idea, and Dr. J no longer doing this type is sign that all roads to help are dead ends.

If anyone has any suggestions about who next to contact, bring it! I've heard of Dr. Lasasso. Anyone have experience with him doing a complicated Acquired Restrictive Thoracic Dystrophy? And what about John Hopkins?

THANK YOU to everyone one here who shares their stories. You are not alone.
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ginmom
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[*] posted on 8-22-2017 at 10:08 AM


Hi harmony, My son also had a Ravitch surgery at UCLA at a young age and now also suffers from Acquired Thoracic Dystrophy. I've sent you a U2U. ginmom
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Fresh
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[*] posted on 8-29-2017 at 10:15 AM


What was the philosophy behind Dr. J's decision to refrain from performing the hybrid procedure on redo patients? She had a whole clinical study that seemed to generate positive results and feedback.
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harmony
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[*] posted on 9-11-2017 at 02:08 PM


Hi GinMom,
I just responded via U2U. So happy you reached out!
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harmony
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[*] posted on 9-11-2017 at 02:12 PM


Hi Fresh,

The official response from her office was they don't have time for this procedure. They are taking new patients, just not ones with Acquired Thoracic Dystrophy.

I have thoughts on why she no longer risks working on this complicated repair, but just my personal theories.
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Halcyon22
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[*] posted on 9-12-2017 at 07:00 AM


Hi harmony, I'd like to hear your personal theories :) I'm hopeful you are able to find answers, never stop searching. Somewhere out there is a surgeon willing to help you, he/she just hasn't been found yet!!



"Man never made any material as resilient as the human spirit."--Bernard Williams

My journal: http://www.pectusinfo.com/board/viewthread.php?tid=11088
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harmony
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[*] posted on 9-14-2017 at 03:24 PM


Hi Halycon22,

I just sent you a U2U.
:)
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[*] posted on 9-16-2017 at 05:48 AM


I'd be interested in hearing your theories also, harmony! :)
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jeddie2
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[*] posted on 9-16-2017 at 09:40 AM


I called Dr. J's office on Thursday to ask about a consultation on some issues and was told she no longer sees anyone who is a re-do. At all. Yes, she had seen me before, no she wouldn't see me again (or anyone else - even for a consultation to provide advice and direction on other surgeons or to give the perspective of an adult chest wall specialist).

I'm guessing her results were not up to her expectations so she had to change the focus of her practice. ??

They did direct me to two places that now see adult patients. 1. the adult pectus program at Cleveland Clinic, no doctor in particular. 216-444-2273 2. Washington University Physicians in St. Louis. 314-362-9181.




Modified ravitch with permanent titanium plates (on top of sternum).
My images:
Before http://imgur.com/a/ZfqYA
After: http://imgur.com/a/QXyWN
My journal: http://www.pectusinfo.com/board/viewthread.php?tid=10194
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[*] posted on 9-17-2017 at 09:19 AM


As disappointing as that is to hear, being someone that has consulted with her and scheduling surgery twice with much hope, I applaud her for being able to make that decision which is I'm sure was next to impossible to do.

Instead of operating on people she's not sure she'd be able to help and may even leave worse off, she made the responsible decision to withdraw from severe redos.

I hope myself and other like cases will have a plan B in the near future. Don't lose hope.
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harmony
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[*] posted on 9-25-2017 at 04:04 PM


Hi Jeddie2,

I can understand how frustrating not being able to consult with Dr. J is, especially since you've already had one with her. Thinking of you and wishing you the best.
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harmony
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[*] posted on 9-25-2017 at 04:12 PM


Fresh,
I'm in agreement with you. Acquired Asphyxiating Thoracic Dystrophy is a very complicated operation and surgery is very risky. I have absolute respect for
Dr. J, her expertise and her decision.

Sending you lots of good vibes!
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harmony
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[*] posted on 9-25-2017 at 04:48 PM


Hey Fresh,

I just read through your entire Post: 3rd times a charm? 32/M - Haller 5.53 - Surgery scheduled for 10/2015 with Dr. J @ Mayo.

You've probably posted an update since then that I haven't seen... that said, your attitude and perseverance are incredible. It is such a roller coaster. Even though I'm pretty sure you've had your share of frustration and low moments (or is that just me? ha ha) I bow my head to you in gratitude for sharing your story and spirit.
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