paralyzed diaphragm

Guest over a year ago

I too was diagnosed with a semi-paralyzed right diaphragm. I have complained to my doctors for years regarding my difficulty with breathing. All of them said it was my being over-weight. So, our weight does come into play. Mine was discovered during a visit to a spine specialist. If you don't have spine issues, and can exercise, do it. My only options are therapy and diet.
Ray

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Guest over a year ago

Hi I also have bilateral paralysis of the diaphragm. The cause is neurological either ALS or Hereditary Neuropathic Amyotrophy. I have been like this for almost 2 years now. I was given a Non Invasive Ventilator about 15 months ago (NIV). This is the best thing ever as I can now lay down and manage to sleep at long last. I use the NIV which is a Resmed S9V for 14 hours a day. This is all night as well as during the day.I can manage about 3-4 hours off it but this depends on what I'm doing. I know how much this can change your life. At the moment we are just seeing how things go, there is no plans as yet to pace or staple the diaphragm. I don't think this is a common procedure here in the UK.

You can get by with your paralysed diaphragm but it sure is a game changer. You look normal from but you can no longer do normal things.

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Guest over a year ago

Scottish here too. I spoke with a Dr in Holland about my problems I'm bilateral paralysed. She said that full recovery can happen this is normally within 1-2 months.you can get partial recover up to 4 years. Then little or no recovery after this.

I may well have had one side paralysed before my neurological condition took out my other pherenic nerve. NIV dependent now 14 hrs a day. I tried like hell to keep up my fitness but I lost that battle early on. Now I just keep plodding along doing as much as I can.

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Guest over a year ago

I was diagnosed on the left side Aug '14 had after several BAD colds/flu. I also had sniff test to confirm. Rechecked in Dec after another respiratory illness. Checked again in 3 months and now 6. Still have it.

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Guest over a year ago

You have Parsonage-Turner Disease/Syndrome. This is caused by rapid neuro-motor / nerve injury to the phrenic nerve, derived from C3-C4-C5 nerves derived from the spinal cord at respective levels. You needed to be treated with Bi-PAP , or secondarily C-PAP. Bi-PAP is preferred. You need an echocardiogram to see if you may have developed Pulmonary Hypertension. You will need to see a cardiologist for this. One way to exercise the diaphragm is to breath in deeply and hold this deep breath without closing your vocal cords, a hundred times a day or more. You need to see a neurologist to see exactly which nerves from the brachial plexus are injured. You received care substantially below the standard of care and you were treated negligently by the pulmonologist. I am a doctor and have the same disease that occurred most likely from a head cold and then a cold sore. This disease most often occurs after a simple head or chest infection. You will need to research Parsonage-Turner Disease and learn as much as you can and then force the doctors to treat you. This disease is not so unusual but very few pulmonologists are even aware of this process. It is as if OMG, what the hell were the doctors doing. This is easily discovered from hundreds of sources on the internet by searching the words " neck pain + paralyzed diaphragm " and even just paralyzed diaphragm. I wish you the best.

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Guest over a year ago

Hi, I have the same problem. Have you recovered at all.

Paula

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Guest over a year ago

My husband is looking at diaphragmatic placation also. I was wondering if you had the surgery and how was your recovery and how did insurance pay if at. All

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Guest over a year ago

I was just wondering how painful the surgery was, and how long were you in the hospital, and did you have any complications after the surgery. Also if you were to do nothing, would the condition get worse?

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Guest over a year ago

Hello everyone;
I had left sided diaphragmatic plication in 2007.
It helped a bit.
I am 48 now, and am not overweight.
I work full time and excersise.
I can tell you vigorous excersise is really tough. There are very few of us out there , with that being said doctors are clueless of what we face.
Since my left diaphram is sutured down (plication) my left lung has little chance to expel c02. Normally that is tolerable, but with steady vigorous workouts it's difficult and I have had this for over 8 years.
If there is anyone out there that continues to excersise in a vigorous way please let me know. I wonder if there are others.

Jack

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Guest over a year ago

Ross, what direction can you send me to see if I can get help also?

Darrell

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Guest over a year ago

I have had a paralyzed right diaphragm for about 6 months post afib ablation and continue to exercise quite vigorously. I can do p90x & kettle bell training....etc. The only imaging I have had is multiple chest X-rays that show an elevated diaphragm. I would put my exercise tolerance at about 70%.

Ron

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Guest over a year ago

Well, I spoke to soon ....... On vacation tried some snorkeling & couldn't do it. Felt increased pressure & just couldn't catch my breathe.

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Guest over a year ago

I've done a bit of research on this subject...I believe that I have it but not officially diagnosed yet.

From what I understand...swimming is a problem because of the water pressure on your abdomen pushing inward (and secondarily upward) causing increased difficulty breathing. I do fairly well on my schwinn airdyne but use 2l of oxygen to enhance exercise tolerance.
James

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Guest over a year ago

I have bilateral diagram paralysis and have had for over 2 years. I use a VPAP 15 hours a day which helps keep my blood gases under some control. Your body does adjust some what buut its aa game changer. I manage to go in a pool for the 1st time in over 2 years butt it felt my heart was in my head.

I have tried to keep as active as possible but its hell to be honest. You benefit from any Acttivity that gets you breathing hard as it allows the blood gases to exchange. But need to watch about bending over or carrying anything using both arm as this lock the muscles I now need to breath.

Charlie

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Guest over a year ago

Hi Angela, your story is MY story!! WOW! I was diagnosed about 3 years ago with my left diaphragm paralyzed. l also saw a few doctors and therapists and did some massage therapies also for about 6 months, during the first year. The physical therapy seemed to help slightly along with home exercises. Last summer I finally tried to get out on the golf course and tennis courts. It felt great to do "some" normal exercise that I have done my whole life! I gained about 30 pounds in the past 3 years (sucks!! because that sure didn't help matters!) I would say my breathing improved about 30% and I have some hope for this coming summer. I still only sleep on one side that is comfortable for breathing and when I am on my back my breath is depleted almost completely. This is my 3rd winter not getting a flu shot and with me working in a middle school with many children that come in sick many of our cold winter days, I fear for the outcome! I take a multi vitamin daily, a glass of Ensure for breakfast every day, and wash my hands many, many times during the day to avoid any possible colds. That would be devastating for my health I believe. So far, so good - I haven't had anything horrible and hope I never do! I hope you read this and if you do please, please, please email me and let me hear your updated story. I would love to talk to you more about this as the flu shot theory is scary and more people should hear about it. If you see this please contact me. Thanks!

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