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

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.

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

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.

I have diaphragmatic paralysis and damage to both phrenic nerves which we believe was caused by cervical spinal surgery.
I had a consultation with a Dr. Rena Jarrahy who is a colleague of Dr. Matthew Kaufman and they do reconstructive surgery. I am 75 and the oldest patient they have had is 69. We are proceeding with an EMG to provide further information for a decision on whether I am a good candidate for their surgery. There is much background on the internet. I have had multiple tests - PFT, Sniff, Blood Gas. I also had a consultation with Duke Medical pulmonary to confirm the diagnosis. I have issues with breathing and fatigue and consequently activity is limited.

Yes - similar enough

I will, I know the feeling as I am 73. Some of these web sites can be very confusing

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.

Could you give me a little more information on how to access this site on FB?

Thanks

My understanding of what Dr. Kaufman is most known for is a nerve graph. He takes a functioning nerve from your calf and grafts it onto the nonfunctioning phrenic nerve. If the graft takes, the renewed phrenic nerve will start working, which means the diaphragm will start working again. From what I understand, he has an age limit and doesn't accept patients over 67, I think it is, for doing the nerve graft. He probably does other procedures too. You can contact his office to find out more information. Every surgery is risky, which is why it's important to find the best most experienced surgeon and facility you can. Best wishes as you figure out your next steps!

I’m thinking about contacting Dr. Kaufman in NJ to have my paralyzed Diaphragm repaired. According to what I’m reading he has a 80 to 90% success rate. I really don’t want to wait 6 months to see if the Diaphragm will come back. It looks from what I’ve been reading it is not very likely to come back, even my pulmonary doctor was not encouraging, he told me not to expect it to come back. So which is better or safer? The Plication surgery or the Diaphragm repair surgery? My insurance is going to be a problem also because some doctors won’t take my supplementary insurance, only Medicare.