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

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.

The three main ways to treat paralyzed diaphragms are plication, nerve graft, and diaphragm pacing. I don't know anything about the center at the University of Utah doing plications, which is why I would go to a center like the Diaphragm Center at Columbia Medical Center in NY, the Cleveland Clinic or the Mayo Clinic, where doctors have decades of experience doing successful plication surgeries. The Utah Center says it has 100% success rate. What does that even mean? No one died? I know there are dozens of qualified skilled thoracic surgeons around the country doing plications, and I'm sure some of them are at the University of Utah. If I had the option, though, I would go to one of the three places listed above.

As I'm sure you know, there are two main ways plication surgeries are done: a full thoracotomy where the surgeon opens your chest cavity or minimally invasive VATs surgery with robots. I asked my prospective thoracic surgeon who diagnosed my PD and specializes in minimally invasive thoracic surgery if he could guarantee he would do my plication using minimally invasive techniques, and he said he could not. He would decide once he started the operation how he would proceed depending on how well he could see. Scar tissue seems to be a big issue impacting plication surgeries. I only mention this because I think patients who want plication surgery assume they can have it done with minimally invasive techniques, where this might not be the case. It is definitely something to ask your thoracic surgeon about. Best wishes as you figure out your next steps!

I really recommend you join the facebook page for people with paralyzed diaphragms. Fortunately I don't need supplemental oxygen with my left paralyzed diaphragm, but many of the people in that group do. They would share their tips on how they cope with breathing and dealing with Medicare and the insurance companies to get the oxygen supplies they desperately need. Most doctors don't know much about this rare condition, and I've learned so much about it and gotten amazing support from people there. Best wishes!

I have a friend who uses a portable oxygen concentrator to increase oxygen. It uses the air in the room, removes hydrogen, and provides concentrated oxygen to breathe.

She has a different reason for using it, and right now is only using it while on an elliptical exercise machine. Not sure if Medicare will pay for it, but it’s probably less expensive for them to pay for. Her husband is a retired general surgeon and would not have her using it if it didn’t work.
https://my.clevelandclinic.org/health/treatments/25183-oxygen-concentrators