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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@sonshine161

I had apneumonectomy in November. My surgeon said he had to sacrifice my vocal cord. I was scheduled to get a surgical implant to fix my voice but it came back in its own After 5 months. Thank God. Living without a voice is hell. Maybe you’ll catch a break.

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Thanks for your prompt reply. Did your surgeon tell you up front or after?
Was it as I describe? I can only whisper in measured words. But my throat is not sore. I am not talking much but it is not getting better.
Living without a voice can be a real handicap. I am happy you got yours back. Is it normal?

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@vic83

How do you know your phrenic nerve was damaged? Did they test and tell you?
I had video assisted thoracic surgery for lung cancer 3 days ago and I lost my voice immediately. I have no volume and can only speak in a whisper and it is hoarse. I have never lost my voice before. I asked the attending surgeon of the day who only replied she was not worried but offered no information on it, or how long it would take for my voice to get back to normal. I live alone and it is now hard for me to communicate with others on the phone.

Jump to this post

I had apneumonectomy in November. My surgeon said he had to sacrifice my vocal cord. I was scheduled to get a surgical implant to fix my voice but it came back in its own After 5 months. Thank God. Living without a voice is hell. Maybe you’ll catch a break.

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@sonshine161

My phrenic nerve damage is the result of a pneumonectomy last week. My voice is hoarse and weak. After i recover from the surgery, I’ll explore ENTs and try and find someone who has experience in this area. I live in the Pacific NW but I’ll travel if i get a recommendation of a great doc somewhere.

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How do you know your phrenic nerve was damaged? Did they test and tell you?
I had video assisted thoracic surgery for lung cancer 3 days ago and I lost my voice immediately. I have no volume and can only speak in a whisper and it is hoarse. I have never lost my voice before. I asked the attending surgeon of the day who only replied she was not worried but offered no information on it, or how long it would take for my voice to get back to normal. I live alone and it is now hard for me to communicate with others on the phone.

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@nla4625

Your poor brother. I'm so sorry he is going through all this! After damage to the phrenic nerve, most doctors recommend waiting up to 2 years to see if the phrenic nerve will repair itself before thinking about doing anything else. If the damage occurred a year ago, it still might heal itself. He is lucky to have you in his corner. Best wishes to you both!

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I wasn't very clear in my previous post because I was thinking about the present, ie what doctors could do for your brother's paralyzed diaphragm now. After waiting 2 years to see if the phrenic nerve heals itself, there are a few things he can investigate that can be done if his symptoms are causing huge problems: diaphragm pacing, plication surgery, and nerve grafts onto the phrenic nerve. The main doctor who is doing the nerve grafts has an age limit for his patients, which I can't remember at the moment -- maybe 69? Hope this helps.

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@nurseb93

My brother had a double lung transplant a year ago. He has been hospitalized except for 3 weeks . His Phrenic nerve was damaged, he has a trach, on tube feedings, has had Klebsiella twice, CMV, told a couple weeks ago he was in acute rejection and was treated twice with IVIG. Now they are saying he has Chronic rejection, before that they said he had AMR. His kidneys have also failed due to all the meds and problems. He has fought so hard to live. Now he is getting rATG. He has been told nothing can be done for his diaphragm or Phrenic nerve. Please advise. He has suffered a lot but continues to fight to live.
Pam

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Your poor brother. I'm so sorry he is going through all this! After damage to the phrenic nerve, most doctors recommend waiting up to 2 years to see if the phrenic nerve will repair itself before thinking about doing anything else. If the damage occurred a year ago, it still might heal itself. He is lucky to have you in his corner. Best wishes to you both!

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@alison2

Hi everyone I am also going through this but my injury was due to an ablation and the doctor hit the phrenic nerve. there is a doctor in New Jersey who is doing a surgery to repair the nerve I’m not sure if you Google the phrenic nerve and New Jersey doctor it will come up. There is also a surgery where they can staple your diaphragm down but it’s very invasive. I have been told I need to wait at least a year to see if it is permanent, that normally it goes away within a year. crossing my fingers!!

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They can put in a device like a pacemaker, it’s a nerve stimulator, for some cases. It is very successful in helping treat phrenic nerve damage.

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My brother had a double lung transplant a year ago. He has been hospitalized except for 3 weeks . His Phrenic nerve was damaged, he has a trach, on tube feedings, has had Klebsiella twice, CMV, told a couple weeks ago he was in acute rejection and was treated twice with IVIG. Now they are saying he has Chronic rejection, before that they said he had AMR. His kidneys have also failed due to all the meds and problems. He has fought so hard to live. Now he is getting rATG. He has been told nothing can be done for his diaphragm or Phrenic nerve. Please advise. He has suffered a lot but continues to fight to live.
Pam

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I have the same problem on the right side. Doctors think it was some kind of damage. I do a lot of swimming and kept it up while trying to figure out what to do. My pulmonologist thinks the swimming helped keep my lung expanded and overcome the diaphragm problem. Passed all my pulmonary function tests and unless some thing comes up the doctor sees know reason for anymore visits. This may not be the answer for everyone, each situation is different.

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I recommend dr. Gordon at Temple/Philadelphia

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@epd

I have issues in my diphragms from complications from a lung surgery a number of years ago. Can anyone suggest a doctor in the Washington DC area that specializes in diseases of the diaphragm? I have had trouble finding a pulmonologist or thoracic surgeon that can really address my issues. Mine are not paralyzed yet, just partially functional. Thanks.

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I did a videoconference with Dr, Mark Ginsburg at the Diaphragm Center at Columbia Medical Center in New York and highly recommend anyone with a weak or paralyzed diaphragm do the same. Many consider him to be the leading expert in the country on diaphragm issues. One of the things I've learned since my paralyzed diaphragm was diagnosed is that most doctors don't know much about diaphragms. Pulmonologists know a lot about lungs and thoracic surgeons know a lot about chest surgery, but few doctors in either discipline know much about diaphragms. Thus, I was really glad to find the Diaphragm Center in New York and have my case reviewed and get all my questions answered. People in the facebook group for people with paralyzed diaphragms have recommended doctors they've had great success with around the country, but I couldn't find one reported in the DC area. Good luck!

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