paralyzed diaphragm

Guest over a year ago

As a doctor with this same disease, if you have had 10 or more flu shots in the past. I would not recommend flu shots. The flu shot may very well precipitate a secondary auto-immune complex that will cause a relapse of the condition, with further demylination of the diaphragmatic nerve [ i.e. if you recovered to some degree ]. I have had maybe 50% reinnervation, and the diaphragm is about 30 to 40 to 50% of the original strength.

For all of you that make it to this site. THE ONLY TREATMENT IS "IV-IG" you must get this as soon as possible to help reverse the offending inflammatory response causing and creating the demylination of the phrenic nerve. This medication helped me tremendously.

If you had no recovery and you had your diaphragm plycated, then it is reasonable to obtain a flu shot. Your gravest danger is pneumonia or the flu. I have had about 30 to 35 flu shots thus I should recognize most any flu strain. When H1N1 swept thru the area, I had it, and never even got sick. This was prior to P-T Syndrome. In the last 18 months I have had the flu about 5 times and got nothing more than a stuffy head and nose. So all of those flu shots really paid off. Yes, this is a tuff disease. It is horrible. It is now found that many people just die. Think of a 350 pound guy, 50 - 60 years old. They will simply de-sat, become hypoxic, cyanotic, and then die.

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Guest over a year ago

Had exactly same issues except I suffer with bad allergies Several sinus infections a year and now this. will see Pulmoniligust soon. Will update then. Glad to see your story

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Guest over a year ago

A Dr. took my Thyroid out and cut my phrenic nerve , my right diaphragm does not work.. Breathing, speaking, really my entire right side is "defective" . When I had the surgery(2012) I could not walk 100 foot with out being out of breathe and could not speak for 10 wks..it got better now it is worse.. Please help me or tell me where to go to get the diaphragm fixed so I can live my life. I am 58 yrs. old and widow and trying to raise 2 grandsons ... P lease help

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Guest over a year ago

Greetings,
Sorry you are having these difficulties. If your Doctor told you the problem...was this diagnosed via a "sniff" test? Did your Doctor not offer to refer you to a specialist Doctor?

There are several options with varying degrees of success (optimally). There is a physician (Dr Kaufman in NJ) who specializes in nerve graft repair of phrenic nerve, You first need a workup including neck ct, sniff test and others. Even if you aren't a good candidate for nerve repair...there are other options including breathing pacemaker.

Another option frowned on by some... is a diaphragm plication which can give an improvement but less so.

Lose weight if overweight and exercise up to what you can tolerate. Use supplemental oxygen if your PO2 is low and many if not most sufferers also have sleep apnea so a sleep study is needed.

It's problematic and will impact your life considerably...but improvements can occur. I moved from the mountains of NM to the Oregon coast to improve my breathlessness.

The discussions relating to inflammation don't really apply to someone with a well defined surgical cause.

Good luck to you,
Jamis

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Guest over a year ago

I have had bilateral paralysis of the diaphragm for almost 3 years now. I am ventilator dependent for around 14 hours a day. Your body does learn to adapt with other muscles taking over some of the work of the diaphragm, but it is a game changer. Lying down, bending and lifting become extremely difficult, even sitting compromises your breathing. I use a VPAP which has become my lifeline and helps me get through the day. The cause of the damage to my phrenic nerves has been extensively looked at but no firm conclusion has been found, other than we know its neurological. Charlie uk

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Guest over a year ago

Hi I was also diagnosed with diaphragm paralysis on left side.im on oxygen 24/7 also. Suppose to start pulmonary rehab doctor says it will help. Did you do this and has your condition changed.

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Guest over a year ago

I had the same thing happen to me from Rotator cuff surgery. I think it was the nerve block. Told to live with it, you don't have it that bad. Its no fun only us individuals living with this condition experience annoying discomfort. Of course worse things in life can happen. One year has gone by and no improvement has occurred. Could be a life long situation I am facing. Tried working out in the gym, guess what, I am on blood thinner I have Atrial Fibrillation. Too much exercising can trigger A-Fib too.

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Guest over a year ago

I have just been told I have a paralyzed left diaphragm, the doctor was upset with the respiratory specialist when they said it may heal it self. She has put me on the fast list for the respiratory clinic . I'm out of breath even when sitting, it came on out of no where. They thought I had pneumonia to.

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Guest over a year ago

that's almost exactly what im going through now......same symtoms exactly

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Guest over a year ago

You got the problem after having a virus? How did they diagnose it? Thanks

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Guest over a year ago

I had a serious virus 6 weeks ago, extreme chest pain and cough- started to get better, flew to a conference for a weekend, the day I returned I woke up and couldn't breath, with chest pain and gasping for air. 2 ct scans, 4 chest X-rays and angiogram- all normal. All blood tests are normal! Still gasping! Help!

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Guest over a year ago

Can you send me any information on where this procedure can be done and who to talk to?

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Guest over a year ago

This is great to hear. I'm just wondering , how to get a better sleep. I'm getting 2 hrs max and I'm sure this isn't helping my situation .

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Guest over a year ago

Hello I'm a 22 year old female which is needing help. I've been in and out of hospital and I've been trying to tell the doctors for ages but they are blaming it on anxiety which I've never had in my life. This all started when I crunched my neck and all my bones went and after that I started to get vertigo and dizziness eye vision troubles, after that I drank a lot and smoked a lot one night and after that I was really stuffy,i couldn't cough up my flem and ever since I've had an issue with my diaghragm I started to feel nausea and then I started to notice muscle inflammation and I experience bloating of my stomach and when I touched it I felt really nausea and about 2 months ago I felt this nerve pain go all the way around my stomach and my diaghragm and I noticed when I breathed in my stomach my diaghragm hurts and now I can't breath in it at all twice now my diaghragm has stopped and I couldn't breath at all my phenix nerve is damaged I think I'm really scared don't know what to do could u please help me my diaghragm has gone stiff and now I have lower back ache and even shoulder blade hurts a lot. I feel so weak I've rung ambulance and they were useless I'm needing help today I have kids and no one isn't checking that for me they check one thing but don't get at the bottom of it I know where it's coming from now I'm so scared. Many thanks for alina

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Guest over a year ago

Hi there you need some NIV its similar to a CPAP machine it aids your breathing when you sleep. Once you get to REM sleep your body only relies on your diaphragm to breath. Basically it switches off all the other muscles as they need to rest. Your diaphragm and your heart are made of different type of muscles to most of the others we have they don't need to rest. So basically when this happens we stop breathing.... you wake as your BP rises and the oxygen levels in your blood drops. This is what happens to me until I was put onto NIV.

I use a Resmed S9 VPAP now. Speak with your local sleep clinic they normally deal with folks with sleep apnea, they should be able to help. Hope this helps

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