Difficulties Breathing with a paralyzed diaphragm

[ScooterK]

Dear Sir or Madam:  In March of 2005, I became very ill and was admitted to the nearest hospital.  Initially I was treated for what seemed to be a heart attack, but was later ruled out.  I layed immobilized in a hospital bed for 5 days until I was diagnosed with Transverse Myalitis(??).  I was paralyzed from the neck down and gradually recovered use of my lower extremeties and upper extremeties over the period of 30 days.  After losing 42 pounds of muscle mass in less than 5 days, my wife proceeded to move on with a 2nd opinion.  I visited a research hospital and was re-diagnosed with Parsonage Turner Syndrome.  This was all fine and dandy, but did not explain the paralysis of my lower extremeties. To make things worse, I was informed that I had the worst case ever reported of this Syndrome and the outcome was questionable.Twelve months later, I have improved greatly in comparison to the onset, but still have an issue with breathing.  I was informed that I have a paralyzed right diaphragm and have a breathing capacity of about 22% of that of the average person my age, while laying down.  I have a very difficult time breathing and often feel that I am about to pass out(when laying down).  I seldom ever get a good nights rest.  My doctors have suggested plication and possibly a diaphragmatic pacemaker and the outcome of these procedures scares me.  I am pleading for anyone's help on how I may function a little better.  The difficulty in breathing has made me very weak and worn out.  Do you have any suggestions on how I may be able to improve my health w/o undergoing surgery.

[National Jewish]

Your first question to the neurologist should be about your prognosis.  This is the specialist that would be best able to tell you if additional recovery is possible so that the nerve will tell your diaphragm to work.  Then you will know your chances of further recovery from this syndrome.

With the passage of time significant recovery is unlikely.  Indeed if this is the case, your doctors’ recommendation of plication and diaphragmatic pacing are reasonable.  Check with your doctors to find the closest medical center with extensive experience in these procedures.  Going there for a consultation would help you to learn what these procedures could do for you.

[ScooterK]

Also, with less than half of the breathing ability of an individual my age (standing up) and 22% (laying down), how will a minor respiratory infection such as the "common cold" affect me?  I am a 40 year old male and was physically in great shape and healthy before the onset of this illness.  Are their other alternatives for my illness?  How safe is plication  or a diaphragm pace maker.  Are there any questions I should ask my physician?

[aadams]

I was admitted to surgery for diaphragmatic plication in April, 2006. I too experienced the rapid loss of muscle mass during my extented stay in the ICU. After only one week on my back I was unable to stand or walk without assistance. I was told it normally takes several months for a person to regain muscle mass which is so quickly lost. As of this date, I still have not fully recovered from the loss of muscle mass.

I know what you mean with respect to shortness of breath and the need to get some rest from what seems to be a never ending ordeal. Surgical plication may provide some degree of relief. But until then it might help if you use oxygen at night to compensate for reduced pulmonary capacity when lying down.

After surgery I was provided with an "oxygen concentrator" for use at home. I prefer the concentrator (over tanks) because it doesn't have to be refilled. At this point, I no longer use it every night. But it does help from time to time when shortness of breath makes it difficult to sleep.

Of course, you'll have to see a pulmonary specialist and work with a therapist to obtain a home oxygen program suitable to your needs. But you will probably have to do this anyway if you are admitted for diaphragmatic plication. To my experience, there's no reason why you should wait until after surgery to get some rest.  

  

[ScooterK]

Thank You very much for the comment and reply!  My initial pulminologist had prescibed the concentrator and 2L of oxygen during sleep and rest.  Recently a team of pulminary specialists at the research hospital had prescribed 2L of oxygen for mild or heavy exertion.  (After walking down the hallway for 1 minute, my oxygen dropped below 80.)

I have am fighting hard to regain my strength and improve my health, but my breathing difficulties often leave me very drained and tired. I have been taking 60 mg of oxycontin daily for the past 16 mos. to cut the pain and to more or less function.  Could this be related to some of the breathing difficulties I am having?  Is it safe to take oxycontin if you were diagnosed with hypoxemia and hypercapnia?  I have been trying to gradually decrease my dependency on this drug, but often find myself in bed once the pain sets in.  

[aadams]

I took Oxycodone (Oxycontin) when I was in the hospital and continued to use it for about three weeks after I returned home. The only pain I experience was secondary to surgery. Over time, the need for Oxycodone diminished and I gradually stopped taking it. I experienced mild nausea with Oxycodone but it did not cause breathing problems.

Diaphragmatic paralysis, per se, should not cause pain. Most people with this condition don't know they have it. The symptoms you describe suggest a condition more insidious than diaphragmatic paralysis. Your symptoms go beyond my personal experience, but I do not believe Oxycodone is the cause of your breathing difficulties.

Nevertheless, your desire to decrease dependency on Oxycodone is well advised. I hope you will continue to work on this. Age 40 is far too young to give up and settle for oxygen therapy and pain management. A complete cure is possible but (in your case) the need for a more definitive diagnosis is obvious.      

[Jane2]

From what I have read about 'Parsonage Turner Syndrome' the prognosis is good, of course as a lay person, I know little about this disorder this is taken from a recently visited website
www.answers.com; Heres the link;

http://www.answers.com/topic/parsonage-turner-syndrome

I don't know if it relates to your situation but it may be worth discussing prognosis and researching about this illness.

Regards
J

[jayngilles]

A related discussion, Not sure if it's a progressive Stuttering or Diaphragmatic issue was started.