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Phrenic Nerve damage and paralyzed diaphragm: Anyone else have this?

Posted by jgreg1954 @jgreg1954, Nov 28, 2017

Phrenic nerve on the right side was destroyed due to radiation for breast cancer. Diaphragm is now paralyzed & taking away lung capacity. Anyone else experience this?

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nla4625 | @nla4625 | 8 hours ago
In reply to @mmclaugh2002 "Thank you and you are right. I had a zoom consultation with his NP to review..." + (show)
@mmclaugh2002

Thank you and you are right.
I had a zoom consultation with his NP to review my condition. She indicated Dr. Kaufman does not do this surgery on individuals over 69 . I was referred to Dr. Jarrahy at UCLA and he wants an EMG before he determines my fitness for this surgery. Dr Jarrahy comes across as very very knowledgeable, careful and competent in assessing candidates for this surgery. I would encourage anyone to reach out - also need to have relevant records you can send before a consultation - PFT, Sniff test , etc. to ensure a qualified diagnosis.

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I didn't realize UCLA has a center for phrenic nerve repair and a surgeon there who collaborates with Dr. Kaufman. Thank you for this valuable information. It will be interesting to see if you are accepted as a patient there, since you are over the age limit for Dr. Kaufman to do this surgery. Please keep us posted -- best wishes! https://www.uclahealth.org/medical-services/surgery/plastic-surgery/reconstructive-services/phrenic-nerve-repair

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nla4625 | @nla4625 | 7 hours ago
In reply to @nla4625 "If you have a Facebook Account, log on and type "paralyzed diaphragm" in the search feature..." + (show)
@nla4625

If you have a Facebook Account, log on and type "paralyzed diaphragm" in the search feature at the top right. The page for the group will come up. You can then click a button to "join" this group. If you don't have a Facebook account, you will have to join and then follow the steps above. I joined Facebook at age 72 just to join the paralyzed diaphragm group, so I'm not an expert on how Facebook works. If all else fails, try a google search on "facebook paralyzed diaphragm group". We hit 1500 members yesterday -- it's wonderful to connect with so many people who know exactly what we're going through to learn from and support each other. I hope you will join. P.S. The site itself has a search feature if there are specific topics you're interested in. Otherwise, I learned a lot from scrolling through different threads or posting questions.

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UPDATE -- there are evidently two facebook groups now supporting people with paralyzed diaphragms. I belong to the one with over 1600 members and don't know anything about the second group. I think it changed its name from something to do with the phrenic nerve damage to a wider topic of paralyzed diaphragm.

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