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Treatment Options for Paralyzed Diaphragm

Lung Health | Last Active: Jun 10 2:15pm | Replies (17)

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The facebook group for people with paralyzed diaphragms has around 1100 members. I'd estimate that more than half of them have had plication surgery, either a full thoracotomy or VAT minimally invasive surgery with robots. Where do you live? Members of the group could recommend a thoracic surgeon near where you live if they know of any. The top expert in the country for plication surgery and diaphragm issues in general that people in the group highly recommend is Dr. Mark Ginsburg at the Diaphragm Center at Columbia Medical Center in NY. I had a video conference with him because I wasn't quite sure that what my local highly qualified thoracic surgeon was telling me was correct. If you join the group, you could ask for recommendations; AND people could answer any questions you might have. This is a rare occurrence, and most doctors don't know much about it...so to have a group with over 1100 people with different knowledge and experienced is an amazing resource. Anyway, if you don't want to do that, please look for a thoracic surgeon who specializes in minimally invasive surgery using robots at a major medical center or a medical center affiliated with a university. Good luck!

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Replies to "The facebook group for people with paralyzed diaphragms has around 1100 members. I'd estimate that more..."

P.S. Who diagnosed your paralyzed diaphragm? Did you have a SNIFF test, which is the definitive test that determines if the diaphragm is paralyzed. The doctor who ordered and evaluated the SNIFF test should be able to help you find a qualified thoracic surgeon too.

@nla4625
I have diaphragmatic paralysis. My symptoms :
1. Difficulty with Inspiration
2. Tension, shakiness
3. Extreme tightness in diaphragm area.
4. Leading to posture issue
5 leading to fatigue
6. Leading to slight balance issues
I found Columbia Univ. Medical Center and Dr. Ginsburg’s group. I will see him July 14 after X-rays and PFT.
Call them and they will want all relevant documentation and test results - Sniff, PFT, Chest x-rays etc.
I have even done a profile so the doctor knows I work out 4 days a week , high protein diet - everything to show I am trying to get stronger, trying to be a good candidate for surgery and hoping my symptoms match procedures that can save me. I have been dealing with this for nearly 4 yrs and it has completely limited my life.
Getting an appointment will take a while. Once you get it I would plan for an overnight and there is a hotel across the streeet.