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Treatment Options for Paralyzed Diaphragm

Posted by nla4625 @nla4625, Nov 6, 2021

This is an excellent video that discusses various treatment options for paralyzed treatments.


https://www.youtube.com/watch.

Interested in more discussions like this? Go to the Lung Health Support Group.

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ialogic | @ialogic | Mar 5, 2023

I’d ask about ozempic or try noom for weight loss and PT for myofascial release. Don’t get on oxygen, you need NIV.

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nla4625 | @nla4625 | Mar 18, 2023

I recently read about a couple of possible new treatments for paralyzed diaphragms on the facebook page for people with paralyzed diaphragms. Reference links are included.

One -- an implantable ventilator -- is being developed at MIT. https://news.mit.edu/2022/diaphragm-implantable-ventilator-1212

Two -- the paralyzed diaphragm muscle is being replaced by new muscle. This is apparently being done at The Reconstruction Center in New Jersey where Dr. Kaufman does nerve grafts onto the phrenic nerve. I haven't heard of anyone who has had this done so would advise really checking out their results rates before pursuing it. . https://www.advancedreconstruction.com/blog/faqs-about-diaphragm-paralysis?

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lululinden | @lululinden | Jan 23, 2024
In reply to @jenniferhunter "@nla4625 Thanks for posting the video with Dr. Kauffman and I look forward to watching it..." + (show)
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@nla4625 Thanks for posting the video with Dr. Kauffman and I look forward to watching it as he discusses his nerve grafting for the phrenic nerve for other doctors. I learned about him here on Connect when other patients posted his name, and I have relayed that information to other patients from time to time who are seeking help in this area. I have learned a lot by watching surgical conference videos and it is very valuable information. I'm glad you shared this!

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I'm new to this group, & wondering if anyone in MN does this phernic nerve reconstruction surgery,
and whether anyone from MN has travelled to New Jersey to have surgery done by Dr. Kauffman, & how that went.

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Jennifer, Volunteer Mentor | @jenniferhunter | Jan 24, 2024
In reply to @lululinden "I'm new to this group, & wondering if anyone in MN does this phernic nerve reconstruction..." + (show)
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I'm new to this group, & wondering if anyone in MN does this phernic nerve reconstruction surgery,
and whether anyone from MN has travelled to New Jersey to have surgery done by Dr. Kauffman, & how that went.

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@lululinden I really don't know as I have heard this information from other patients on Connect. You can always search online and on Google Scholar for any medical literature which would list authors.

Jennifer

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nla4625 | @nla4625 | Mar 18, 2024
In reply to @nla4625 "P.S. Who diagnosed your paralyzed diaphragm? Did you have a SNIFF test, which is the definitive..." + (show)
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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.

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The latest technology for determining a paralyzed diaphragm is a SNIFF test using ultrasound. This replaces the fluroscope SNIFF test.

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yooper1949 | @yooper1949 | Jun 12, 2025

I was diagnosed at Mayo's in 2018 with paralyzed left diaphragm. 76 yr. old male. I have A-fib, had a bleed from blood thinners, and failed 2 tries of getting a watchmen device , Dr. said my heart is twisted and appendage is not right. Has anyone been told that the left diaphragm being pushed up is twisting the heart. I feel it is but the Dr. doing watchmen device surgery said no. Failed watchmen device was on 06/09/2025.

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mmclaugh2002 | @mmclaugh2002 | 1 day ago
In reply to @nla4625 "The facebook group for people with paralyzed diaphragms has around 1100 members. I'd estimate that more..." + (show)
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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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@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.

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