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PARALYZED DIAPHRAGM RIGHT SIDE+

IS THERE A TREATMENT OR SURGERY FOR THIS CONDITION AND WHERE


This discussion is related to paralyzed diaphragm.
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Avatar universal
My right diaphram has be paralyzed for 181/2 years .  It was damaged during a surgery and paralyzed a week later.  Since then my liver has moved up by heart and my breathing is about 73% standing and decrease to the low 40 laying.  I am 40 years old and my fathering law who has copd can do better on a flight of stairs then ican.   Do you think the surgery was worth it?  
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Avatar universal
This is my first update in awhile so I hope it offers enough for those sitting on the fence post some encouragement and those new to this site a ray of hope! I’ll do a quick review so it is not necessary or go back and read all the different replies and questions.  

Back in 2005 I had a subclavian bypass to correct a blood flow issue to my right arm. During this procedure my phrenic nerve was severed leaving me with a paralyzed diaphragm. After reading sights like this and seeing how many people had written looking for help I stumbled across Dr Matthew Kaufman. I called with some skepticism, but felt, due to the complications I had developed over the 5 years since that fateful day, that maybe it was time to take a leap of faith.

February of 2010 I flew from Michigan to New Jersey to meet with Dr Kaufman. This came about after Dr Kaufman himself called me to discuss a meeting. This of course was after reviewing my medical records. After a meeting in his office he sent me for nerve testing to see if the procedure was indeed viable. I met with Dr Cole of the Kessler Institute for Rehabilitation.
Dr Cole felt that my nerve had not died off completely and was going to send a favorable report to Dr Kaufman. 30 Days later on March 5th 2010 I had the nerve transplant performed at St Peters University Hospital. Now the rest of the story begins.

I’m not going to go into all the details again but come up to speed. 5 weeks ago I had some spasms in my diaphragm. This was the 1st real sign of my diaphragm responding to the transplant. I knew when I had the surgery that it was a waiting game. 10-14 months were the estimate for the nerve to grow back. I was getting shocks at both ends of the surgery. Small electrical shocks. I had had some early in the recovery because that is what happens when the nerve starts to “wake up again”  At this point I joined a gym and started to push myself. I wanted to find out if this was everything I have waited patiently for. To jump back in time I had digressed to the point of 50 ft and I was all done! Out of breath! Winded!

Its been 5 weeks now and I have lost 20 lbs. and have completed four 5k’s to date on the tread mill and will be running in my 1st real 5k April 2nd in Sacramento CA. My goal is to be 35-38 minutes. Now this will not get me an invite to the Olympics but I would hope it would offer encouragement to
those who have felt that there is no hope!  I encourage anyone that reads this to take that 1st step and find out if you can be helped. My quality of life, though not what it was before my misfortune, is so much better that it was!

Now for the last and most exciting news! I went to the hospital today and had a sniff test. I was able to see my Diaphragm move! Yes move! The 1st thing out of the Dr’s mouth after convincing him I need to have this procedure was “Damn! It moved” The Dr that did the sniff test had pronounced my diaphragm dead in July of 2007. The 1st words out of his mouth were. Why are we doing this test again? A paralyzed diaphragm doesn’t get better!  It was the 1st time in his career or for that fact the radiology staff had seen this happen. Now I must clarify my diaphragm did not have the movement of my left one so I’m not out of the woods yet but considering it lay dormant for 6 years I’m excited about movement of any type. Will it continue to improve? I don’t know but I want to believe it will! Since this is new territory for me and the severity of my condition when I found Dr Kaufman I can’t say he’ll know either. I also had a Pulmonary Function test today. Mixed results but some improvement in all areas. My blood oxygen is also 100%. That was big! Also the reason I’ve tossed my
c-pap.

If this has intrigued anyone, PLEASE do not hesitate to write me. I hope I can update this again in the near future with more good news!  Ross
    
  
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1304412 tn?1273088789
Hello RWFORD,(Sorry sent to the wrong person the first time)  

I to have a right side diaphragm that is paralyzed, waiting to see the pulmonologist.  Could you please tell me any contact information about the Doctors, or department that did your sugery.  I hope that you are doing well and I suspect that it might be awhile until the fix is complete, but worth waiting for.

Thanks!

Fred
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1304412 tn?1273088789
Hello,

I to have a right side diaphragm that is paralyzed, waiting to see the pulmonologist.  Could you please tell me any contact information about the Doctors, or department that did your sugery.  I hope that you are doing well and I suspect that it might be awhile until the fix is complete, but worth waiting for.

Thanks!

Fred
Helpful - 0
710547 tn?1295446030
Wow - congrats on your surgery.  I too have rt hemi-diaphragmatic paralysis.  I have MS, but also pulmonary problems from Systemic Sclerosis - I have so many diseases, it's hard to figure out what causes what.  But to answer the first poster - I agree that it would totally depend on why you developed the condition.  There can be physical damage to the nerve, or a disease state causing the damage - or the paralysis can be unrelated to the nerve - more a function of the lower lobe of the lung being unable to expand itself.  Lots of variables.  Definitely worth looking into though.  Since I have medicaid - I already know I can't get cutting edge treatments, but I hope you can!!

Blessings, Ja
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Avatar universal

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

I am not aware of your curcumstances behind waht caused your problem so I don't want to offer false hope but I researched several techniques and havebeen to the mayo clinic nad this was the choice that I went with. If you qualify it is the only repair that does not uses pacemakers.

Good Luck.
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