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.

Hello @usmccam, I have been using a CPAP machine since last summer and have went through quite a few different masks trying to find something that works for me. I'm wondering if that might be part of your problem of the suffocating feeling with the BiPAP nasal mask.

There is an active discussion here you might want to read where you will meet other members using a CPAP/BiPAP machine and learn tips that they have shared. @thankful, @cece55, @jjspokane61, @dawn_giacabazi may be able to share some suggestions to help with your BiPAP machine.

Groups > Sleep Health > Cpap and sleep
https://connect.mayoclinic.org/discussion/cpap-and-sleep/

Have you discussed with your doctor that the mask causes you to feel suffocated? I would see if there is another alternative for the mask or nasal pillow you currently have. It's the key piece to helping a person use the BiPAP or CPAP machine and get the sleep the body needs.

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@usmccam

Hi @teresa My NP suggested this might be the issue and wants to do a pulmonary test to rule out on the 23rd. Meantime, breathing has become very difficult now regardless of the position I am sitting. They did start me on BiPap but I have stopped it as it made me suffocate and start to choke. All of my research into this possible dx points to it exactly as my symptoms are identical and I feel it was surgically caused. Thank you for your reply.

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Hi @usmccam
I have read some of you replies and questions. I first want to say THANK YOU for your service.

I to use BiPap & CPAP. Based on my experience I absolutely hated it when I started using the machines. I would rip that mask off gaging and choking and gasping for air. My doctors changed my settings to a range so the pressure would auto adjust to my needs. As we awake our need for assistive breathtaking is less and s my doctor explained to me that’s when we struggle with the pressure. I have no issues with it now. I have developed some shortness of breath when I lay on my left side so I will often put the machine on while I’m awake reading to help alleviate those symptoms. Has your doctor talked about adjusting the pressure on your machine?

Thanks
Dawn

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@usmccam – I would agree with the advise you are getting. If you read any of my previous posts on this subject you will hear over & over that the specific mask that works for you will not only allow you to tolerate Cpap, but will go a long way to bringing back good sleep and eliminate many of the illnesses associated with Sleep Apnea, which are plentiful! The ramp feature on most newer Cpaps is a great way to help especially early on to get used to your mask and the perscribed pressure your sleep Dr. has you at. They may need some tweeking over time, but that can easily be done by you with some help or by your sleep Dr. In some cases these adjustments can be made by your Dr. online. Hope this helps! Happy Zzzz's Jim @thankful

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Hi USMCCAM…I am pretty new at this but I can tell you what helped me with the suffocating feeling. While many people like the ramp feature which on my machine starts at 4 (they gave me 45 minutes to fall asleep) and then it progressed to 6, I felt like I wasn't getting enough air. I don't use the ramp and just start at 6 pressure and it is very comfortable. That way I haven't spent 45 minutes struggling to breathe and getting anxious and frustrated. I also went to the medium size pillows for my mask which is one size up from the small that I started with. I loosened my mask and it does not leak. All this made the breathing much more comfortable. I hope this helps in some way.

CeCe55

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@cece55

Hi USMCCAM…I am pretty new at this but I can tell you what helped me with the suffocating feeling. While many people like the ramp feature which on my machine starts at 4 (they gave me 45 minutes to fall asleep) and then it progressed to 6, I felt like I wasn't getting enough air. I don't use the ramp and just start at 6 pressure and it is very comfortable. That way I haven't spent 45 minutes struggling to breathe and getting anxious and frustrated. I also went to the medium size pillows for my mask which is one size up from the small that I started with. I loosened my mask and it does not leak. All this made the breathing much more comfortable. I hope this helps in some way.

CeCe55

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@cece55 Thank you for the advice but my issue is the bigger problem of a paralyzed diaphragm. Nonetheless, I will keep your info available when I am better able to use the BiPap without so much discomfort.

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@hopeful33250

I am glad to hear that you will have a follow up on the 23rd so that you can know for sure about this possible diagnosis, @usmccam. I pray that you will get some answers.

I see that you were started on a BiPap but had problems with it. In case you would be interested in looking into this now (or after your appointment on the 23rd), I would like to invite @johnbishop, into this conversation. John is a Connect mentor who facilitates discussion groups on C-Pap and he may be able to direct you to discussions on use of the BiPap. Often there are adjustments you can make with these machines so that they can be used more comfortably.

I hope your appointment on the 23rd gives you some answers. Will you post again with an update after the 23rd?

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@teresa Yes, I will post after my 23rd appointment. Thank you.

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@johnbishop

Hello @usmccam, I have been using a CPAP machine since last summer and have went through quite a few different masks trying to find something that works for me. I'm wondering if that might be part of your problem of the suffocating feeling with the BiPAP nasal mask.

There is an active discussion here you might want to read where you will meet other members using a CPAP/BiPAP machine and learn tips that they have shared. @thankful, @cece55, @jjspokane61, @dawn_giacabazi may be able to share some suggestions to help with your BiPAP machine.

Groups > Sleep Health > Cpap and sleep
https://connect.mayoclinic.org/discussion/cpap-and-sleep/

Have you discussed with your doctor that the mask causes you to feel suffocated? I would see if there is another alternative for the mask or nasal pillow you currently have. It's the key piece to helping a person use the BiPAP or CPAP machine and get the sleep the body needs.

Jump to this post

@john I will discuss with my Doc or technician when I see them. I wanted a nasal mask but using 6 LPM of 02, they said I could not use a nasal one. We will see. Thanks

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@dawn_giacabazi

Hi @usmccam
I have read some of you replies and questions. I first want to say THANK YOU for your service.

I to use BiPap & CPAP. Based on my experience I absolutely hated it when I started using the machines. I would rip that mask off gaging and choking and gasping for air. My doctors changed my settings to a range so the pressure would auto adjust to my needs. As we awake our need for assistive breathtaking is less and s my doctor explained to me that’s when we struggle with the pressure. I have no issues with it now. I have developed some shortness of breath when I lay on my left side so I will often put the machine on while I’m awake reading to help alleviate those symptoms. Has your doctor talked about adjusting the pressure on your machine?

Thanks
Dawn

Jump to this post

@Dawn I have not talked to anyone on the BiPap issue as everyone's concern in on the paralyzed diaphragm issues. BiPap was ordered to help me get some better sleep as I only get 2 hours in as many days due to the breathing difficulties. I will know more on the 23rd and will post an update then. Thank you so much.

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@thankful

@usmccam – I would agree with the advise you are getting. If you read any of my previous posts on this subject you will hear over & over that the specific mask that works for you will not only allow you to tolerate Cpap, but will go a long way to bringing back good sleep and eliminate many of the illnesses associated with Sleep Apnea, which are plentiful! The ramp feature on most newer Cpaps is a great way to help especially early on to get used to your mask and the perscribed pressure your sleep Dr. has you at. They may need some tweeking over time, but that can easily be done by you with some help or by your sleep Dr. In some cases these adjustments can be made by your Dr. online. Hope this helps! Happy Zzzz's Jim @thankful

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@thankful Thanks for your reply and insights.

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@lisalucier

Hi, @giller198. Thanks for sharing this diagnosis of a paralyzed right diaphragm, plus your background with heart valve surgery and what has been ruled out so far. I can understand your wanting to know how this might have happened, and I applaud your persistence in trying to figure this out.

I'd like to introduce you to @wsh66, who has talked about paralyzed diaphragm, and @jmmb has also talked about diphragmatic issues and may have some thoughts on your condition and on potential surgical repair. @jgreg1954 @allisonsnow @kariulrich @kdubois @hopeful33250 also may have insights for you.

@giller198 — what would you say have been your biggest challenges thus far with this condition?

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Curious on paralyzed diaphragm. I’ve not been diagnosed. For 8 months I’ve struggled with pain and pressure in my diaphragm that is followed by loss of voice. It’s like no air can get through my vocals. Causes severe fatigue. Causes chest pain but only on left side. Has anyone had these symptoms.

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Hi @cathleenmc and welcome to Connect. That pain and pressure in your diaphragm must be irritating and painful.

I wanted to introduce you to fellow Connect members @giller198 @allisonsnow and @usmccam who have experience with similar feelings and may be able to offer you support and share their experience with you.

What has your doctor said about this pain?

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@cathleenmc

Curious on paralyzed diaphragm. I’ve not been diagnosed. For 8 months I’ve struggled with pain and pressure in my diaphragm that is followed by loss of voice. It’s like no air can get through my vocals. Causes severe fatigue. Causes chest pain but only on left side. Has anyone had these symptoms.

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@cathleenmc There could be different causes of the pain, so it's best to see a specialist. If you had a paralyzed diaphragm, you would be doing more work with upper chest muscles to breathe, which in itself, does cause some anxiety and raises your heart rate. I know someone with that condition as a result of spinal cord injury. He speaks just fine, and he was a clarinet player. He can still play the clarinet, but doesn't have any air power behind it to play as the virtuoso that he was. He is functioning without a mechanical assist.

What I think might be a possibility for you is phlegm buildup which could explain chest and lung pain, tightness, and loss of voice. I did have symptoms like this too, and I had reoccurring chest infections, and I thought I had one of the bad ones that are hard to cure. I have allergic asthma, or what they like to call Eosinophilic asthma. I have multiple allergies including to my own cats and do allergy shots, but it wasn't enough. The amount of exposure I was getting from cat dander overpowered my allergy treatments and I continually had phlegm buildup and used Guaifenesin (over the counter) to thin the phlegm so I could expel it. I would always feel it start in my left lung. By making changes at home with the position of my HEPA air filter when I sleep and wearing paper surgical masks when I am near the cats, and cleaning as much as possible, I was able to resolve the problem completely even well enough that we can coexist and the masks are good enough to prevent problems even if I don't take antihistamines or do the allergy shots. Phlegm does cause severe fatigue if it is blocking the air from getting to the surface of your lung tissue air sacs. We are also most vulnerable sleeping, because we are not expelling mucous, and it builds up, so in the morning, it is the worst. If this is happening to you, the question then is why is there excess phlegm? Infection? Allergy? Asthma? Physical issue? For me, when I had these infections, my resting heart rate was over 100/minute and I went to the emergency room. I had this problem for a couple years before I figured it out. I do now have a steroid type preventative asthma inhaler, but don't want to use that long term to avoid the side effects, and it works by depressing the immune system, so I would be more at risk for the infection I'm trying to prevent. I hope that gives you some insight on possible solutions.

Liked by Dee

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@usmccam

@cece55 Thank you for the advice but my issue is the bigger problem of a paralyzed diaphragm. Nonetheless, I will keep your info available when I am better able to use the BiPap without so much discomfort.

Jump to this post

I'm late comming into the discussion, but FYI, my pulmonologist ordered a "sniff test" when he suspected a paralysed diaphram last June. Have you had this done? Its a XR Fluoro proceedure with contrast where they watch the diaphram as you "sniff"…
mine proved…
I am having similar issues with congestion since going on the Resmed CPAP machine summer of 2018..I attribute it to an alergy to the silicoln mask materials, but not sure. It seems that when I replace the mask I immediately get the congestion for a week or so…hardly able to talk.
I have used the SoClean 2 since I first went on the machine last summer.
When I confronted the pulmonologist with the issue, he sent me to an ENT doc, who in turn prescribed an antibiotic whcih I took for 2 weeks and added Zantac to my tray of tablets…seems like a guessing game to me!! The problem subsided for awhile, but is still troubling.
Interestingly, the Pulmonologist told me to turn up the machine's humidity setting…a week later, the sleep clinic nurse called as a followup and she told me to turn off the humidity!!!???? When I turned it off the congestion subsided some, but still there today.
Biggest concern is my wife is a lung cancer patient and she went through a similar run around with pulmonologists, gastro docs etc., before we finally went to Mayo and found the underlying problem was LUNG CANCER!

Liked by Dee

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@burrkay

I'm late comming into the discussion, but FYI, my pulmonologist ordered a "sniff test" when he suspected a paralysed diaphram last June. Have you had this done? Its a XR Fluoro proceedure with contrast where they watch the diaphram as you "sniff"…
mine proved…
I am having similar issues with congestion since going on the Resmed CPAP machine summer of 2018..I attribute it to an alergy to the silicoln mask materials, but not sure. It seems that when I replace the mask I immediately get the congestion for a week or so…hardly able to talk.
I have used the SoClean 2 since I first went on the machine last summer.
When I confronted the pulmonologist with the issue, he sent me to an ENT doc, who in turn prescribed an antibiotic whcih I took for 2 weeks and added Zantac to my tray of tablets…seems like a guessing game to me!! The problem subsided for awhile, but is still troubling.
Interestingly, the Pulmonologist told me to turn up the machine's humidity setting…a week later, the sleep clinic nurse called as a followup and she told me to turn off the humidity!!!???? When I turned it off the congestion subsided some, but still there today.
Biggest concern is my wife is a lung cancer patient and she went through a similar run around with pulmonologists, gastro docs etc., before we finally went to Mayo and found the underlying problem was LUNG CANCER!

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Sorry to hear about your wife. I’ve had pulmonary breathing test but not sniff test. Says I have a small nodule on lung but not worried since not a smoker. ENT did two scopes and said no lesions or nodules. Gastroenterologist did an EDG and found some bacteria and infection, followed with antibiotics and steroids. Been no change. Go back to UAB in March.
Hope you gets answers and relief.

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@cathleenmc

Sorry to hear about your wife. I’ve had pulmonary breathing test but not sniff test. Says I have a small nodule on lung but not worried since not a smoker. ENT did two scopes and said no lesions or nodules. Gastroenterologist did an EDG and found some bacteria and infection, followed with antibiotics and steroids. Been no change. Go back to UAB in March.
Hope you gets answers and relief.

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Thanks!
Beware of the non smoker thought…you can get lung cancer – smoker or not! Linda Wortman can attest to that…
Good luck with you health issues..

Liked by Dee

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