Paralyzed Diaphragm -Shortness of Breath

[bigfish35]

Sometime ago I thought my shortness of breath problem following valve replacement/repair surgery was on the way to being cured. I happily posted here that, following a cardioversion, breathing was markedly better. My optimism proved to be premature.

Shortness of breath continued and seemed to reach a plateau so I therefore sought the help of a pulmonologist. After many questions, some preliminary tests, and a review of my chest x-ray, the pulmonologist tentatively concluded that I have a paralyzed right diaphragm, most likely caused by phrenic nerve palsy. The phrenic nerve controls the movement of the diaphragm when breathing in and out. The right side of my diiaphragm is significantly higher than the left and impinges on the lower part of the right lung. Because of the nerve palsy, the right side of the diaphragm does not move with breathing.

I am now scheduled for a CT scan, a sniff test, and pulmonary function test to help solidify the diagnosis.

Apparently phrenic nerve complications following cardiac surgery, while not common, occur in approximately 10% of cases. I had never heard of this condition and was somewhat surprised that this could be the cause of my continued shortness of breath. Based on what I have read, reversal of phrenic nerve palsy does not look promising.

I would like to hear from anyone who has dealt with this problem.

 

[Ross]

I have the same thing only on my left side. My left lower lobe of my lung is collapsed and not exchanging oxygen and carbon dioxide properly, resulting in low oxygen saturation levels. Someone at one time discussed options to correct the situation, but I really don't see how. I cannot bend over, move, stretch or anything without falling into the 80's saturation and very very short of breath with minimal exertion.

This is what I was trying to think of:

When the diaphragm doesn�t move, it is effectively treated by a surgical procedure called diaphragmatic plication.

http://mmcts.ctsnetjournals.org/cgi/content/full/2007/1217/mmcts.2006.002568

 

[bigfish35]

Thanks for the link, it was very helpful, but I'm not sure I want another operation involving the chest cavity right away. Ultimate;y, the plication procedure may be the only way to go. I have also read about th possibility of diaphragmatic pacing - either distal phrenic nerve stimulation or direct muscular stimulation with implanted electrodes. Not sure of success rates of either of these approaches but they may be worth a try prior to opting for the plication. I'v got to have some serious discussions with my pulmonologist about the various options. I'll pass along any news I get.

Sorry to hear about your problem. I know breathing problems can seriously curtail life's activities.

 

[Jeanie]

This is a long shot and not likely to be a quick fix, but I recently found somewhere online a reference to the nutrient Acetyl L-Carnitine having among other uses, beneficial effect upon nerve regeneration. So, hypothetically, if the nerve problem is reversible, that nutrient might help? That really is a bummer you have this, but am glad you brought it to all of our attention by taking time to share that info.
http://www.lef.org/magazine/mag2000/may00-cover2.html scroll down to nerve regeneration
http://recoverydoctor.blogspot.com/2009/08/acetyl-l-carnitine-may-increase-nerve.html

 

[Ross]

Thanks for the link, it was very helpful, but I'm not sure I want another operation involving the chest cavity right away. Ultimate;y, the plication procedure may be the only way to go. I have also read about th possibility of diaphragmatic pacing - either distal phrenic nerve stimulation or direct muscular stimulation with implanted electrodes. Not sure of success rates of either of these approaches but they may be worth a try prior to opting for the plication. I'v got to have some serious discussions with my pulmonologist about the various options. I'll pass along any news I get.

Sorry to hear about your problem. I know breathing problems can seriously curtail life's activities.

Supposedly Topomax is shown to improve lung function, but I don't know about that. I myself, cannot endure another surgery, so it's not an option for me. I'm saddled with high output oxygen now and still have a hard time maintaining 97% for any length of time.

 

[Jeanie]

Ross, I am in awe of you, anew, just thinking of the time and effort you put into this forum, when you have such severe health challenges yourself. I just wanted to let you know I appreciate your hard work administering this forum.

 

[Ross]

Ross, I am in awe of you, anew, just thinking of the time and effort you put into this forum, when you have such severe health challenges yourself. I just wanted to let you know I appreciate your hard work administering this forum.

Thank you. I can't keep it up much longer.

 

[bigfish35]

Thank you Jeanie. It looks like Acetyl-L-Carnitine may be worth a try.

 

[Kathleen]

Bigfish I have had the diagnosis of paralysis of the diaphragm and mine is left hemi. I did undergo a plication of the diaphragm. If you have any questions please let me know. One thing to remember even after the plication paralysis is paralysis. My doctors said at times the nerve can regenerate within a year time frame. Nerves are amazing things.
Kathleen

 

[Ross]

Bigfish I have had the diagnosis of paralysis of the diaphragm and mine is left hemi. I did undergo a plication of the diaphragm. If you have any questions please let me know. One thing to remember even after the plication paralysis is paralysis. My doctors said at times the nerve can regenerate within a year time frame. Nerves are amazing things.
Kathleen

Well I have questions, not that I could do the surgery, but how are you feeling now? Can you honestly breath better or is it just so so?

 

[buncle]

Ross-Ditto Jeanie-Thank you!

 

[Kathleen]

Thats a tough one to answer since the surgery was 13 years ago. I had pneumonia in the left lower lung for about 8 months before the surgery since it was like yours collapsed. My organs began to move into the dead space so they had to re-inflate the lung and move some of the organs down into place. The incision began under the armpit and moved to the center of my spine then slightly upward. They removed a rib and I have had extensive nerve damage from the incision. I can still not sniff and move the left nostril and have very little air in the bottom of the lung although once inflated it was pink and healthy. Within a few months of the surgery I felt I could breathe better but I attribute that to the pneumonia finally being gone. I feel the only good part was getting rid of the pneumonia and putting the organs back in place. It was without a doubt the most painful of the four heart surgeries I have had. As you understand any upper respiratory issues are much worse with the ongoing paralysis.
Kathleen

 

[Ross]

Thats a tough one to answer since the surgery was 13 years ago. I had pneumonia in the left lower lung for about 8 months before the surgery since it was like yours collapsed. My organs began to move into the dead space so they had to re-inflate the lung and move some of the organs down into place. The incision began under the armpit and moved to the center of my spine then slightly upward. They removed a rib and I have had extensive nerve damage from the incision. I can still not sniff and move the left nostril and have very little air in the bottom of the lung although once inflated it was pink and healthy. Within a few months of the surgery I felt I could breathe better but I attribute that to the pneumonia finally being gone. I feel the only good part was getting rid of the pneumonia and putting the organs back in place. It was without a doubt the most painful of the four heart surgeries I have had. As you understand any upper respiratory issues are much worse with the ongoing paralysis.
Kathleen

Thanks Kathleen. Mine has been collapsed for so long that it's just useless. My oxygenated blood and deoxygenated blood just sit there and it makes life miserable. I looked at how the placation was done and thought, man, I don't need to feel any tighter in the chest then I already do. Sometimes, I feel like my heart and lungs are crowding everything else out. Of course, I have other lung issues which lead up to this, including mulitple rounds of pneumonia. I think 11 times total now since 1991. Just getting a simple cold for me, can become life threatening. I honestly feel like the boy in the plastic bubble. Have to watch out for everything coming down the pike. The hemosiderosis has caused many of my alveolar air sacs to burst and what haven't are enlarged to an emphysema state. Right now, my new pulmonologist is freaking out because no matter how much oxygen he gives me, my sats still drop like a rock upon movement. I'm fine if I sit still! Only problem with that is, sedentary allows weight gain and compounds the problem.

I agree on the fact that lung/diaphragm surgery is worse and more painful then heart surgery. I don't question that at all.

 

[mallory67]

Plication Surgery

Plication Surgery

Bigfish I have had the diagnosis of paralysis of the diaphragm and mine is left hemi. I did undergo a plication of the diaphragm. If you have any questions please let me know. One thing to remember even after the plication paralysis is paralysis. My doctors said at times the nerve can regenerate within a year time frame. Nerves are amazing things.
Kathleen

Kathleen,

Could you share you experience with plication surgery? I lost my left phrenic nerve during Thymectomy surgery last month and my left diaphragm is paralyzed. Otherwise I am a 45 year old male in good shape ... slim, non-smoker, healthy. I can walk no problem ... but am short of breath speaking quickly or doing anything more than a walk.

I was wondering if plication surgery helped you? How did you have it done? Minimally invasive or thoracotomy? Any info you provide would be of great help Would love to hear about your experience with this surgery.

 

[escargome]

mallory67, it appears that Kathleen hasn't been posting for a time. This thread is from 2010. However, maybe you could drop her a private message and see if she responds. Or possibly others will come on here and give you their insight. I hope all turns out well for you.