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Hi! A few days ago my doctor told me that I have paralyzed diaphragm. I have shortness of breath, and this causes me lot of trouble. Do you know something more about that? What can be cause? Is there some surgery to fix this problem?

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Hi! Diaphragmatic paralysis is a condition where phrenic nerve is not working properly. In most of cases cause can’t be found. Paralyzed diaphragm can be caused by multiple sclerosis, thoracic and cervical spine surgery, muscular dystrophy and various diseases of muscle called myopathies. Surgery called diaphragmatic plication may fix your diaphragm so that it works better. After this surgery people you will have less shortness of breath and better pulmonary function tests. You should talk with your doctor about surgery. Good luck!
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I was diagnosed with a paralyzed diaphragm (right side) 14 mths ago. It will only rule your life if you let it!! I was told my running days were over. There not!! After a year of building up to it, i am able to do a 40 min gentle jog- tough though. I was told my hobby of snorkling was over and to be aware i could drown! Its not & i havn't!! Can still snorkel with a bouyancy aid, can still dive into pools, im just sensible with it, swim on my back more keep my lungs clear of the water as much as possible. I am also an asthmatic, so breathing can be a problem at times but try to keep fit & watch diet (occasionally). Putting on weight makes it much harder to breath. Yes- It is a pain! but you can lead fairly normal lives, you just need a bit if determination! i'm happy to answer any questions.
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To Guest (Posted 3/11/09)
I was encouraged by your post. I was diagnosed with a partially paralized diaphragm on the right side also. Caused by a virus. I have to use oxygen 24/7. You seem so active. And that is great! Do you use oxygen also? How were you able to 'build up' your endurance to do what you do? Would love to hear.
Have a great day
Nana Peters
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Hi Nana Peters

I was jogging for several yrs before been diagnosed with paralized diaphragm so was pretty fit anyway, just had to spend a yr adjusting my breathing rythym when i jog (cant take deep lung fulls now), still get short of breath but i guess because i am an asthmatic have always been a little short of breath when running so the change didn't seem so drastic? I'm very lucky that i dont need oxygen that must be quite scary. As for my snorkelling there is no real problems there and no longer need Bouyancy aids, although diving below water can still be a bit tricky. I also find that at age 46 Its getting harder to lose weight so try to watch diet more, If I put just a few extra pounds it REALLY does make things more uncomfortable, so thats my battle at the moment to lose a few pounds!

Anyway good luck! :-D
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If you have phrenic nerve damage you might be a candidate for a new procedure! I’ m very excited and hopeful as I was operated on 1 week ago by a great team of surgeons. There was testing involved to make sure I was a candidate as not all will be. My chances of a complete recovery will have several limiting factors. 1. The length of time my nerve was damaged (over 5 years). The fact that my diaphragm was logged in my chest cavity. Made the surgery difficult. (the latter is unusual and will not apply to most).

The recovery time is approximately 1 year. During this time a transplanted nerve will be growing into place to replace the damaged nerve. I will be posting updates on my own progress over the next year for anyone that is interested in this procedure

I can say that if nothing else happens I have gained back several functions that have already made a change in my life. I can now lay flat on my back w/o grasping for breath. I can bend over and tie my own shoes , again w/o grasping for breath. And last of all the fact that there were faint sounds coming from my right lung for the 1st time in 5 years leads me to have a hope that did not exist just 1 week ago

I too was told I had COPD. That diagnosis came along with my paralyzed diaphragm. I've been to the Mayo clinic and they confirm my belief that it was the problems with the diaphragm. My problems to worsened as I got older. My diaphragm eventually ended up in my chest cavity. It’s been a long road but for the 1st time in years I feel there is some hope for me.

The Dr's are great and it only cost me a few minutes on the phone with the Dr and a 2 day trip to see if I qualified. I'm case # 13 so it is a new use of an established technique

This proceedure is not for everyone but if you qualify the benifits greatly outweight what plication can achive. Not everyones condition is aas severe as mine was either. I too worked and getting more out of my condition but the best was walkingon flat surfaces. So not to ramble on if you are interested in the procedure I can steer you in the right direction.

Good Luck!
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Greetings Ross Ford!

I too have a paralyzed phrenic nerve and diaphragm problem, this condition was diagnosed at the Mayo Clinic. Would it be possible for you to send me the particulars and the doctors names who can help rectify my problem. Please stay in touch. Thank you

Regards
Joe
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Greetings Ross,

I too have a diaphragm problem, my phrenic nerves don't work. This June I turn 69, I've had this condition for 9 years. Iv'e been to the Mayo clinic where they diagnosed my problem. At first it was diagnosed as PH at UCLA Medical center. Would it be possible for you to tell me how to get in touch with these Doctors who can help rectify my situation. Please keep in touch Thank you

Regards
Joe
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Joe. I hope this can offer you some hope. I'm not an expert by any means and the longer it has been since the paralysis the less the chance of you being a candidate. I'm not trying to discourage you but I was cautiously optimistic until the test results came in.
The web site is . Read the article by Dr. Matthew Kaufman and send him an email at the link provided. They will contact you in 2-3 days and talk to you openly to get an intial assessment and then decide if you should come in to see them for more testing.

Good luck. Let me know how this works out for you. I have started a group at google.com groups to document my own recovery. You can contact me there also. I really hope they can help you.


***edited by moderator*** web addresses not allowed
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Joe, My surgery was performed by Advanced Reconstruction Surgery in New Jersy. Dr Kaufman lead the surgical team.
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Ross, I want to thank you very much for sharing this information, A little info with me, I wear a Bi-pap when I go to sleep. 2 reasons, 1 to breathe, because I can't get into the supine position. 2 Also because I have sleep Apnea.

There were times when I had to bend over, no breath at all, I can somewhat bend over, but what I do is hold my breath. Once in a while I'll walk the dog down the street, I'm exhausted by the time I get back to the house. I'll keep in touch. Thanks for your help.

Warmest regards
Joe
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Hi Ross,

I spoke with the office person today at Advanced Reconstruction Surgery, very cordial, have to send them my medical records, she briefed me on the protocol etc. Ill keep in touch.

Ciao
Joe
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Ross: What is the medical group, can't locate it. Thanks
Ciao
Joe
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Joe,
Just wondering if you herd back from the Dr. and if he offered any hope.

Ross
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Hi Ross, No, I haven't heard anything as yet, hope to hear from them by early next week.
Can't seem to get on your blog. Did you have to pay any money out of your own pocket for this procedure?

Keep in touch Thanks

Ciao
Joe
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