Paralyzed Diaphragm

Posted by giller198 @giller198, Jul 3, 2018

My name is John and I was diagnosed this past January with a paralyzed right diaphragm. Phrenic nerve damage has been ruled out because of the amount of time between my heart valve surgery and when this started. I still cannot figure how this happened, I have a couple of ideas but nothing conclusive. I have seen two pulmonary doctors and both say there is a surgical procedure that can be done but no guarantee that it will work. I would like to know if anyone out there has been diagnosed with a paralyzed diaphragm and if they had it fixed.

Interested in more discussions like this? Go to the Lung Health Support Group.

"Diaphragm Plication" I believe is the name of the procedure....

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Here is a case series from NIH on long term impacts of the procedure https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2996377/

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Hi John. I had a paralyzed left diaphragm. I suffered for many years. I was treated for COPD..asthma for a long time. Until a specialist finally found the problem. Although it being kind of rare the specialist did not perform that type of surgery to correct it. He did some searching & found a doctor for me. I had the surgery about a year & half ago. It has been great! Before the surgery I wasn't able to rush around, climb any sort of upgraded area, or even carry things without being very short of breath. When it got so bad I couldn't make it across a highway on the crosswalk before the light changes over or being able to get into my car & needed to catch my breath before locking my seatbelt I knew I needed to do something because it seemed to be getting worse over the years.
Anyways this amazing doctor did a surgery which now has my right side diaphragm help work my left side lung now. It's great now! I even did some hiking after my recovery.

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@jenniferhunter

@labsmom5 In reading your list of diagnoses, there seems to be a lot there that can affect breathing.

Have you been tested for allergies? This certainly can affect how much phlegm is in your lungs obstructing the air ways. I have asthma, and even though I'm treating allergies with shots, it wasn't doing enough for my cat allergy. By making changes at home with using HEPA air filters, and wearing a HEPA quality surgical mask when I'm near the cats, and cleaning/vacuuming to reduce dander, it made a world of difference in my ability to breathe, and I can coexist with my cats. Until I figured out the connection, I would get accumulating phlegm that progressed to lung infections with my heart rate raised. The masks are 3M #1820 Procedure mask with ear loops (not ties) that have >99% Bacterial filtration efficiency and > 99% @ 0.1 Micron particles. If I can prevent the triggers from getting into my lungs, my lungs don't react by producing the excess phlegm.

The spinal stenosis and retro spondolisthesis might be affecting your breathing too. The phrenic nerve exits the spine from the spinal roots of C3, C4, and C5 and travels down next to the spine before passing near the heart and reaching the diaphragm. if you are having vertebrae slipping and neck muscle spasms, it could be affecting the phrenic nerve through a physical compression somewhere in it's pathway. Have you tried any physical therapy to improve your breathing? I'm not suggesting physical exercise, but manual techniques like myofascial release therapy. I am a spine surgery patient with a fusion at C5/C6, and I also have Thoracic Outlet Syndrome (TOS) and that made my neck and chest tight where nerves and vessels were passing through small areas. TOS is common among patients with spine injuries and it affects the mechanics of breathing which I have experienced. Through physical therapy and MFR, I've been able to improve my breathing and get things moving again as they should be. MFR often can help where conventional treatments fail. If you have had long term inflammation, or injuries, the fascia can become tight and restricted. Lung tissue is mostly fascia with blood vessels in it. You can have fascial restrictions into the chest where the nerves are passing. It might be something to look into.

Has anyone offered treatment for your spinal stenosis and retro spondolisthesis? If you have instability there, it's possible this could be a source of phrenic nerve problems from irritation or compression. Are you getting help for the sleep apnea and using a machine to breathe at night? That might help a lot too. One of my friends uses one, and she told me that because she was in panic breathing mode all night, it was raising her anxiety levels during the day, which then again causes breathing using muscles in the upper chest and neck... the same place where tight muscles can affect breathing.

MFR is also treatment for fibromyalgia. It might be worth discussing with your doctor if physical therapy can help. Not all doctors embrace MFR or understand it, but it works, and I have benefited from it a lot. Right after my spine surgery, I did have breathing problems, and the tightness from the surgical path tightened the fascia very close to where the restrictions exists from the TOS, and my pain was worse until we opened up those spaces with MFR work.

I created a discussion about Myofascial Release. There is a lot of information collected there where you can learn about it. There is a provider finder link on the myofascialrelease.com website.

https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Here are some other links you might find helpful.

https://teachmeanatomy.info/neck/nerves/phrenic/
https://www.painscience.com/articles/respiration-connection.php
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

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Yes I have been tested for allergies. Dust, grass and certain drugs. I have covers on fabrics that can be washed, air purifier, no carpets. Don't do any outside work or around plants. Have a list of medicine that I can not take without going into antiphallic shock. Been there, done that.

Have done physical therapy for the back but not specifically for the breathing issues. They were treating me for COPD and asthma before they just found out the diaphragm problem. I see pulmonologist this month to talk about that. I am hoping to find out more on treatments at that time. And if I can cut out some of the meds I am on since it may be that I don't have COPD or asthma but were just mis-diagnosed. Any suggestions on questions I should ask him? Or treatments that I could try?

I live in small rural area. Have not heard of anyone that does MFR in this area. What type of doctor/facility offers this? I will have to do some research on this and if my insurance company will help.

I do use a cpap machine at night. They recently increased my pressure and it is helpful.

I will check those links. Thanks.

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@labsmom5

Yes I have been tested for allergies. Dust, grass and certain drugs. I have covers on fabrics that can be washed, air purifier, no carpets. Don't do any outside work or around plants. Have a list of medicine that I can not take without going into antiphallic shock. Been there, done that.

Have done physical therapy for the back but not specifically for the breathing issues. They were treating me for COPD and asthma before they just found out the diaphragm problem. I see pulmonologist this month to talk about that. I am hoping to find out more on treatments at that time. And if I can cut out some of the meds I am on since it may be that I don't have COPD or asthma but were just mis-diagnosed. Any suggestions on questions I should ask him? Or treatments that I could try?

I live in small rural area. Have not heard of anyone that does MFR in this area. What type of doctor/facility offers this? I will have to do some research on this and if my insurance company will help.

I do use a cpap machine at night. They recently increased my pressure and it is helpful.

I will check those links. Thanks.

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@labsmom5 It is usually physical or massage therapists who do myofascial release. You can search at this link. http://mfrtherapists.com/ You might ask the pulmonologist to explain the path of the nerve to the diaphragm so you know where it goes, and ask where it might be compressed that MFR and physical therapy may be able to release.

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@labsmom5

Yes I have been tested for allergies. Dust, grass and certain drugs. I have covers on fabrics that can be washed, air purifier, no carpets. Don't do any outside work or around plants. Have a list of medicine that I can not take without going into antiphallic shock. Been there, done that.

Have done physical therapy for the back but not specifically for the breathing issues. They were treating me for COPD and asthma before they just found out the diaphragm problem. I see pulmonologist this month to talk about that. I am hoping to find out more on treatments at that time. And if I can cut out some of the meds I am on since it may be that I don't have COPD or asthma but were just mis-diagnosed. Any suggestions on questions I should ask him? Or treatments that I could try?

I live in small rural area. Have not heard of anyone that does MFR in this area. What type of doctor/facility offers this? I will have to do some research on this and if my insurance company will help.

I do use a cpap machine at night. They recently increased my pressure and it is helpful.

I will check those links. Thanks.

Jump to this post

Hi
I was on high blood pressure meds, inhalers, nebulizer...i was also told i had COPD along with asthma. I had the surgery about 3 years ago. At the time of surgery while in the hospital my blood pressure was too low so they removed the meds. I told the doctor maybe i didn't need them any longer...his response was he never has met someone who has been on high blood medication & stop needing it. Well i am living proof! I no longer use inhalers, nebulizer for my breathing. It was so bad that couldn't even walk any upgraded area, carry groceries from the store to my car..even carry my grandchildren while walking. Now today...I do all that! It's like having a second chance. I'm so happy i did it. It was horrible living like that & at times wheezing..hard time catching my breath. It's all good now!

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Hello members of the Lung Health group. I think it's safe to say that everyone sharing in this group has interacted with @jenniferhunter. She seems to always be online to offer information, give support, connect you with others, and to share a laugh of two. Ever wonder what makes Jennifer tick and what she does when she's not on Connect? Now you can.
Check out the Member Spotlights and read the latest story about Jennifer.

- Meet @jenniferhunter: Where Health and Art Meet https://connect.mayoclinic.org/page/about-connect/newsfeed/meet-jenniferhunter-where-health-and-art-meet/

Be sure to subscribe (+Follow) the About Connect page https://connect.mayoclinic.org/page/about-connect/ and see new member spotlights published every 2 weeks.

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@ethanmcconkey Thanks, Ethan! I'm glad you enjoyed the interview and my stories!

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@brendy56

Hi John. I had a paralyzed left diaphragm. I suffered for many years. I was treated for COPD..asthma for a long time. Until a specialist finally found the problem. Although it being kind of rare the specialist did not perform that type of surgery to correct it. He did some searching & found a doctor for me. I had the surgery about a year & half ago. It has been great! Before the surgery I wasn't able to rush around, climb any sort of upgraded area, or even carry things without being very short of breath. When it got so bad I couldn't make it across a highway on the crosswalk before the light changes over or being able to get into my car & needed to catch my breath before locking my seatbelt I knew I needed to do something because it seemed to be getting worse over the years.
Anyways this amazing doctor did a surgery which now has my right side diaphragm help work my left side lung now. It's great now! I even did some hiking after my recovery.

Jump to this post

Brenda, It's John, I'm glad to hear the diaphragmatic plication worked for you. After reading about Brian I was a bit concerned. I have a couple of questions. Did your doctor get your phrenic nerve checked out? I'm thinking this would be the first thing to get checked. May I ask where you had the surgery done? As I mentioned to Brian in an earlier post the only place I could find was Cedars-Sinai Hospital in LA. As far as getting the phrenic nerve checked for me that would be the Mayo Clinic in Scottsdale AZ . Take care

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@teresa. After my 23rd appointment, my lobes collapsed and I have been in ICU on a machine and just got moved to a chronic care unit. Good news is that I do not have a paralyzed diaphragm as testing indicated. Bad news, however, is that I am end stage chronic Atelectasis from advanced Bronchiectasis. I have been placed into a Monarch chest vest to help dislodge the mucous plugs along with an airway clearance system and lung expansion therapy using the MetaNeb CPEP/CHFO system by Hill-Rom. So far the treatments are helping and I am able to breathe more comfortably while being bedridden. Whether or not I will be able to breathe again out of bed or without assistance remains to be seen. Thank you, everyone, for your help with this issue.

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