Elevated diaphragm causing COPD type symptoms

Posted by bill5 @bill5, Mar 17 8:27pm

I recently had a upper esophageal barium test as my Dr. thought from chest X-rays it looked like my diaphragm was compressing my left lung. The photos from the barium test did show a highly elevated diaphragm. My Dr. is discussing with a surgeon about the possibility of surgically lowering it. The only possibility that I can think of that might of caused this problem, would be related to a auto accident 20 odd years ago. Has anyone else on Connect possibly been diagnosed with similar?

Hi Kevin,

I realize you don't have a definite diagnosis of a paralyzed diaphragm yet and won't until you've had the Sniff test. Thus, the terms we're using are different…elevated lung diaphragm vs paralyzed diaphragm. It will be a relief, I know, to have an actual diagnosis so you can chart the course ahead. In the mean time, you're doing exactly what I've tried to do with every medical issue I've faced, ie learn as much as I can about it. One of the things that has really helped me learn about paralyzed diaphragms, ie possible causes, symptoms, treatment options, breathing exercises, physical therapy, recovery time, waiting to let the phrenic heal itself and how long that takes, etc. is joining the facebook group for people with paralyzed diaphragms. It is a rare condition; and being able to read posts from 750+ people who have it and their experiences and tap into their expertise has really helped me learn about and figure out how I'm going to deal with my paralyzed diaphragm. I've never thought facebook had much value; but I've changed my mind about that and hope you might consider joining the group. I have the mindset you do, which is to do everything I can through diet, physical therapy, qijong, TCM, breathing exercises, etc, carefully weigh my options and resort to surgery as a last option. My thoracic surgeon wanted to schedule me for plication surgery right away and pretty much scoffed at the idea of physical therapy, qijong, breathing exercises, etc….which is the path I decided to take. He did recommend losing weight, which I'm working on. I've gotten the impression that being physically fit has really impacted how people respond to plication surgery, so that will really work in your favor if you decide to have it at some point.

I wonder what year the YouTube film you saw that said that plication surgery was a dangerous procedure with a 50% mortality rate was produced and what procedures they were using. Most surgeons now are using VAT (video assisted technology) with robots and doing minimally invasive thoracic surgery. People undergoing plication surgery have vastly different experiences, ranging from getting out of the hospital in a couple of days with minimal pain to being in the hospital for several days and experiencing pain weeks and months later. Some have found it's taken up to a year to recuperate. My surgeon made it sound like plication surgery is a pretty easy routine operation that I would bounce back from with no problem. However, from reading the posts on facebook I know that isn't the case and now have much more realistic expectations about what I might expect if I decide to have plication surgery. I haven't seen or read anything about people dieing as a result of plication surgery, although every operation has its risk. I also haven't read about organs moving up through a hole in the diaphragm. That sounds like a diaphragmatic hernia, which is different from a paralyzed diaphragm, and may be more difficult to repair. I don't know anything about that. However, with a paralyzed diaphragm, breathing is impacted when organs move up into the chest cavity when the paralyzed diaphragm floats upwards and doesn't fulfill its role of keeping organs in place. My left diaphragm is paralyzed. As a result, my stomach is floating up into my left lung cavity. It seems as though the liver floats up into the chest cavity of people with paralyzed right diaphragms. The surgeon does insure all the organs are in their proper places as part of plication surgery.

Re diaphragm pacing — If you join the facebook group, please read all of the posts from Steven Carter. I first heard about diaphragm pacing from him, and he has had such a positive result from this procedure. He posted pictures of the pacemaker and wires that go inside his body that attach to his diaphragm, which were pretty interesting. He said there is only one person in the country doing this procedure on adults with paralyzed diaphragms, Dr. Onders at University Hospital in Cleveland, although the procedure is apparently being used for children and adults with ALS, spinal injuries, etc. to get people off ventilators. I asked Steven yesterday what the prerequisites are for Dr. Onders to accept you as a patient for diaphragm pacing, and he said the diaphragm had to respond to electrical stimulation. Here is a link explaining what it is in general terms: https://en.wikipedia.org/wiki/Diaphragm_pacing. I think Steven said you would know within 3 months if this procedure was going to work, and it had a success rate of 89%.

If you're interested in this as a future option, I encourage you to contact Dr. Onders office directly. If I were younger (I'll be 75 this month) I'd definitely look at this option first if/when I needed surgery. I'd also look at grafting a functioning nerve onto the non functioning phrenic nerve, which Dr. Kaufman in New York is doing. https://www.advancedreconstruction.com/matthew-kaufman-md/ . I think he operates at UCLA too. They seem to be the leading and I think the only experts in the country doing their respective things, whereas a lot of excellent doctors around the country are doing plication surgery.

I got a breathing tool called The Breather from PN Medical that I like and think is helping me. One of their people had a really informative interview with Dr. Mary Massery about the diaphragm. This is a link to an article she wrote that covered some of the valuable information she spoke about: https://www.masserypt.com/wp-content/uploads/2018/05/Massery.-Phrenic-Nerve-PT.-Rehab-Surgery-Chap-11.-2017.pdf

I'll be anxious to hear the results of your tests. Please let me know if I can provide any other information. Nancy

REPLY
@nla4625

Hi Kevin,

I realize you don't have a definite diagnosis of a paralyzed diaphragm yet and won't until you've had the Sniff test. Thus, the terms we're using are different…elevated lung diaphragm vs paralyzed diaphragm. It will be a relief, I know, to have an actual diagnosis so you can chart the course ahead. In the mean time, you're doing exactly what I've tried to do with every medical issue I've faced, ie learn as much as I can about it. One of the things that has really helped me learn about paralyzed diaphragms, ie possible causes, symptoms, treatment options, breathing exercises, physical therapy, recovery time, waiting to let the phrenic heal itself and how long that takes, etc. is joining the facebook group for people with paralyzed diaphragms. It is a rare condition; and being able to read posts from 750+ people who have it and their experiences and tap into their expertise has really helped me learn about and figure out how I'm going to deal with my paralyzed diaphragm. I've never thought facebook had much value; but I've changed my mind about that and hope you might consider joining the group. I have the mindset you do, which is to do everything I can through diet, physical therapy, qijong, TCM, breathing exercises, etc, carefully weigh my options and resort to surgery as a last option. My thoracic surgeon wanted to schedule me for plication surgery right away and pretty much scoffed at the idea of physical therapy, qijong, breathing exercises, etc….which is the path I decided to take. He did recommend losing weight, which I'm working on. I've gotten the impression that being physically fit has really impacted how people respond to plication surgery, so that will really work in your favor if you decide to have it at some point.

I wonder what year the YouTube film you saw that said that plication surgery was a dangerous procedure with a 50% mortality rate was produced and what procedures they were using. Most surgeons now are using VAT (video assisted technology) with robots and doing minimally invasive thoracic surgery. People undergoing plication surgery have vastly different experiences, ranging from getting out of the hospital in a couple of days with minimal pain to being in the hospital for several days and experiencing pain weeks and months later. Some have found it's taken up to a year to recuperate. My surgeon made it sound like plication surgery is a pretty easy routine operation that I would bounce back from with no problem. However, from reading the posts on facebook I know that isn't the case and now have much more realistic expectations about what I might expect if I decide to have plication surgery. I haven't seen or read anything about people dieing as a result of plication surgery, although every operation has its risk. I also haven't read about organs moving up through a hole in the diaphragm. That sounds like a diaphragmatic hernia, which is different from a paralyzed diaphragm, and may be more difficult to repair. I don't know anything about that. However, with a paralyzed diaphragm, breathing is impacted when organs move up into the chest cavity when the paralyzed diaphragm floats upwards and doesn't fulfill its role of keeping organs in place. My left diaphragm is paralyzed. As a result, my stomach is floating up into my left lung cavity. It seems as though the liver floats up into the chest cavity of people with paralyzed right diaphragms. The surgeon does insure all the organs are in their proper places as part of plication surgery.

Re diaphragm pacing — If you join the facebook group, please read all of the posts from Steven Carter. I first heard about diaphragm pacing from him, and he has had such a positive result from this procedure. He posted pictures of the pacemaker and wires that go inside his body that attach to his diaphragm, which were pretty interesting. He said there is only one person in the country doing this procedure on adults with paralyzed diaphragms, Dr. Onders at University Hospital in Cleveland, although the procedure is apparently being used for children and adults with ALS, spinal injuries, etc. to get people off ventilators. I asked Steven yesterday what the prerequisites are for Dr. Onders to accept you as a patient for diaphragm pacing, and he said the diaphragm had to respond to electrical stimulation. Here is a link explaining what it is in general terms: https://en.wikipedia.org/wiki/Diaphragm_pacing. I think Steven said you would know within 3 months if this procedure was going to work, and it had a success rate of 89%.

If you're interested in this as a future option, I encourage you to contact Dr. Onders office directly. If I were younger (I'll be 75 this month) I'd definitely look at this option first if/when I needed surgery. I'd also look at grafting a functioning nerve onto the non functioning phrenic nerve, which Dr. Kaufman in New York is doing. https://www.advancedreconstruction.com/matthew-kaufman-md/ . I think he operates at UCLA too. They seem to be the leading and I think the only experts in the country doing their respective things, whereas a lot of excellent doctors around the country are doing plication surgery.

I got a breathing tool called The Breather from PN Medical that I like and think is helping me. One of their people had a really informative interview with Dr. Mary Massery about the diaphragm. This is a link to an article she wrote that covered some of the valuable information she spoke about: https://www.masserypt.com/wp-content/uploads/2018/05/Massery.-Phrenic-Nerve-PT.-Rehab-Surgery-Chap-11.-2017.pdf

I'll be anxious to hear the results of your tests. Please let me know if I can provide any other information. Nancy

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Dr. Kaufman's office is in New Jersey–sorry.

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@nla4625

Dr. Kaufman's office is in New Jersey–sorry.

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Hi Nancy,
Thanks for your feedback. It's very helpful for me so I'm greatly appreciated.
The video about a procedure in which the doctor said "50% mortality rate" is "Diaphragm Hernia & What to do … " by Dr. Buck Parker. It has 22K views – Published Feb 17, 2018.

Yesterday, Torrance memorial Hospital supposed to do 2 tests for me : Sniff test & CT scan, but their CT scan machine was broken so they will do it next week. The Sniff test confirmed that my right diaphragm is not moving when I inhaled & exhaled. They showed me the video of that sniff test and it was distressing for me to see my motionless right diaphragm !

I guess they probably will wait after the CT scan next week to talk to me about what to do next. Meanwhile I'm reading other posts in this Mayo Clinic Connect to learn more about various breathing techniques to deal with this problem. I also will join Facebook groups as you have suggested to study more about this disease's symptoms, causes, physical therapies, surgeries. As for now, my only option is "deep breathings" and try to relax (as I learned that emotional distress/anger could affected my breathings).
I'll update my status in the near future.
THANKS. Kevin

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Hi Kevin, Thanks for keeping us posted. I learned something really interesting the other day from a question I asked the facebook group. I've always been pretty laid back and never experienced anxiety before; thus, it's been puzzling to me that I'm grinding my teeth and need to order and wear a mouth guard to protect them. Several people (all of whom had paralyzed diaphragms) said they had experienced anxiety that disappeared after they had plication surgery, pacing surgery, or a nerve graft that helped them breath better. One of the members, a retired PA, said breathing problems resulting in too much C02 in the body cause anxiety. It's the flip side of what you mentioned. Anyway, she said increasing the times throughout the day I used my Breather or did other breathing exercises should help…so time will tell. It sounds as though you're well on the road to having a diagnosis, which for me was always a good feeling, whatever the diagnosis might be. I always hated not knowing. Are you seeing a thoracic surgeon? Since a paralyzed diaphragm is pretty rare, many PCPs and even pulmonologist don't seem to know much about them and people don't really get good advice until they get to a thoracic surgeon. It sounds as though you are being tested at a major medical center, so maybe that isn't true in your case. Take care! Nancy

REPLY
@nla4625

Hi Kevin, Thanks for keeping us posted. I learned something really interesting the other day from a question I asked the facebook group. I've always been pretty laid back and never experienced anxiety before; thus, it's been puzzling to me that I'm grinding my teeth and need to order and wear a mouth guard to protect them. Several people (all of whom had paralyzed diaphragms) said they had experienced anxiety that disappeared after they had plication surgery, pacing surgery, or a nerve graft that helped them breath better. One of the members, a retired PA, said breathing problems resulting in too much C02 in the body cause anxiety. It's the flip side of what you mentioned. Anyway, she said increasing the times throughout the day I used my Breather or did other breathing exercises should help…so time will tell. It sounds as though you're well on the road to having a diagnosis, which for me was always a good feeling, whatever the diagnosis might be. I always hated not knowing. Are you seeing a thoracic surgeon? Since a paralyzed diaphragm is pretty rare, many PCPs and even pulmonologist don't seem to know much about them and people don't really get good advice until they get to a thoracic surgeon. It sounds as though you are being tested at a major medical center, so maybe that isn't true in your case. Take care! Nancy

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Hi Nancy,
No I haven't seen any thoracic surgeon or other specialists yet. My family doctor introduced me to a pulmonary doctor and she connected me with Torrance Memorial Hospital for a sniff test (done) and a CT scan (next week). That's all !
My best hope is that they will introduce me to some breathing techniques or physical therapies first before any kind of surgeries. Based on what I've been reading so far, the possible surgeries would be a nerve graft applied to a phrenic nerve, or diaphragm muscle replacement surgery, or a phrenic neuropathy, or a diaphragm pacing, or plication surgery.
There are so much to learn and I'm a bit overwhelmed right now, but gradually I'll gain more useful and essential knowledges about this rare disease.
BTW, I also have a rare condition called TGA (Transient Global Amnesia) for 2 decades now. For a person to have 2 rare conditions, I can't help it to wonder "why me ?" LOL. But I'm trying to accept and deal with these physical problems rationally and calmly since I have no other choice. That's life, isn't it ?
Thanks. Kevin

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Hi Kevin, It's amazing all you've learned in a short time. I hope you're not suffering from information overload and will take some time to process it all. It is overwhelming when something major goes wrong with our bodies. I had 3 surgeries for unrelated abnormal growths and tumors 3 years in a row when I was in my early 30s and wondered what the heck was going on. Fortunately none of them was cancerous. I'd never heard about TGA but read an article about it by the Mayo Clinic. That must really be frightening and challenging to deal with day to day. I've been spending a lot of time reading about functional medicine and food/nutrition as medicine, which I totally believe in, for the main reason of trying to prevent getting dementia and Alzheimer's. I think most people my age really worry about having these brain disorders and memory problems, which you've already had to deal with. At least most cases of dementia and Alzheimer's are preventable, whereas you had no control over getting TGA It doesn't seem very fair. I wonder if TCM or supplements would help with that condition. I'm glad you joined the facebook paralyzed diaphragm group. I'm learning a lot of valuable information from the 757 people in the group who have paralyzed diaphragms and have pursued all of the available treatment options and hope you will too. They have been really gracious about answering questions I've asked and generous in sharing their knowledge, as are people on Mayo Connect. I'd still recommend getting the EMS test to see if your phrenic nerve is viable, because that will be really important in figuring out the next steps, including waiting a couple of years to see if the nerve heals itself. I personally like your go slowly approach instead of jumping into surgery…which is what I decided for myself. A couple of people in the facebook group have just had their phrenic nerves start working again, which is truly amazing. I grow more and more amazed at how our bodies can heal themselves if we identify and remove the toxins causing inflammation and diseases and provide the missing nutrients they need, which is what functional medicine is all about. Thanks for keeping us posted on how you're doing. Take care! Nancy

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@nla4625

Hi Kevin, It's amazing all you've learned in a short time. I hope you're not suffering from information overload and will take some time to process it all. It is overwhelming when something major goes wrong with our bodies. I had 3 surgeries for unrelated abnormal growths and tumors 3 years in a row when I was in my early 30s and wondered what the heck was going on. Fortunately none of them was cancerous. I'd never heard about TGA but read an article about it by the Mayo Clinic. That must really be frightening and challenging to deal with day to day. I've been spending a lot of time reading about functional medicine and food/nutrition as medicine, which I totally believe in, for the main reason of trying to prevent getting dementia and Alzheimer's. I think most people my age really worry about having these brain disorders and memory problems, which you've already had to deal with. At least most cases of dementia and Alzheimer's are preventable, whereas you had no control over getting TGA It doesn't seem very fair. I wonder if TCM or supplements would help with that condition. I'm glad you joined the facebook paralyzed diaphragm group. I'm learning a lot of valuable information from the 757 people in the group who have paralyzed diaphragms and have pursued all of the available treatment options and hope you will too. They have been really gracious about answering questions I've asked and generous in sharing their knowledge, as are people on Mayo Connect. I'd still recommend getting the EMS test to see if your phrenic nerve is viable, because that will be really important in figuring out the next steps, including waiting a couple of years to see if the nerve heals itself. I personally like your go slowly approach instead of jumping into surgery…which is what I decided for myself. A couple of people in the facebook group have just had their phrenic nerves start working again, which is truly amazing. I grow more and more amazed at how our bodies can heal themselves if we identify and remove the toxins causing inflammation and diseases and provide the missing nutrients they need, which is what functional medicine is all about. Thanks for keeping us posted on how you're doing. Take care! Nancy

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Hi Nancy,
Newest development in my case : After reviewing my Sniff Test and the CT Scan results, my Pulmonary Doctor told me that both of my lung diaphragms are working fine !
What a surprise ! since my family doctor said the X-rate picture seemed to indicate an "elevated lung diaphragm" and that's why he referred me to the Pulmonary Doctor and she ordered Sniff Test and the CT Scan.
But since this is a Pulmonary Doctor's specialty, I think her diagnostic is probably correct. However, she went on and ordered a "Pulmonary Function Test" for me on August 3, meanwhile my Cardiology Doctor also ordered a Calcium Score Test and a Echocardiogram for me.
So, looks like I'm back to square one again. My physical problem is still the same and my doctors are still trying to find out what is wrong with me.
They mentioned something like "the vaccine might cause too much Inflammations to the heart's muscles" but they are not sure yet.

Whenever they come up with a definite diagnosis then I'll let you know.
THANKS. Kevin

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Hi Kevin — Thanks a million for the update. I don't know if I should be happy for you or not. I guess I'm glad you don't have a paralyzed diaphragm but feel really badly that you don't have a diagnosis or treatment plan for your SOB symptoms. I quit reading heart-wrenching posts from hundreds of Mayo Connect members regarding going years with no diagnosis or relief for their SOB issues. Conventional medicine was definitely failing them, and I hope it won't fail you. If it does, please find the best functional medicine practitioner you can and have him/her take a look for underlying causes of your symptoms and treat them. I'm convinced that's the way to go, particularly when conventional medicine fails you. I talked to my pulmonologist today about next steps for me. He's astounded that my pulmonary function test shows my lungs with a paralyzed diaphragm are operating within normal parameters and said I must have had this for a long time for my lungs to be compensating so well. He agrees I'm doing the right things, ie lose more weight and build up my strength before considering surgery, and prescribed pulmonary and physical therapy for me, which I wanted. One odd thing I've traced back to my PD is that I'm grinding my teeth. Anxiety evidently results when CO2 isn't expelled properly and builds up in the body and that anxiety is causing me to grind my teeth. Hopefully, the respiratory therapist can teach me how to be sure I've expelled all the CO2 I can when I exhale. I'm investigating getting a mouth guard in the meantime. I'll really look forward to your next post when you have this figured out and are playing 3 hours of nonstop tennis again. Take care! Nancy

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@nla4625

Hi Kevin — Thanks a million for the update. I don't know if I should be happy for you or not. I guess I'm glad you don't have a paralyzed diaphragm but feel really badly that you don't have a diagnosis or treatment plan for your SOB symptoms. I quit reading heart-wrenching posts from hundreds of Mayo Connect members regarding going years with no diagnosis or relief for their SOB issues. Conventional medicine was definitely failing them, and I hope it won't fail you. If it does, please find the best functional medicine practitioner you can and have him/her take a look for underlying causes of your symptoms and treat them. I'm convinced that's the way to go, particularly when conventional medicine fails you. I talked to my pulmonologist today about next steps for me. He's astounded that my pulmonary function test shows my lungs with a paralyzed diaphragm are operating within normal parameters and said I must have had this for a long time for my lungs to be compensating so well. He agrees I'm doing the right things, ie lose more weight and build up my strength before considering surgery, and prescribed pulmonary and physical therapy for me, which I wanted. One odd thing I've traced back to my PD is that I'm grinding my teeth. Anxiety evidently results when CO2 isn't expelled properly and builds up in the body and that anxiety is causing me to grind my teeth. Hopefully, the respiratory therapist can teach me how to be sure I've expelled all the CO2 I can when I exhale. I'm investigating getting a mouth guard in the meantime. I'll really look forward to your next post when you have this figured out and are playing 3 hours of nonstop tennis again. Take care! Nancy

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Hi Nancy,
Thanks so much for your kind words.
Yes, I had mixed emotions when the pulmonary doctor told me that my diaphragms are functioning properly. It was a relief to know that I don't have PD, but then what causes my problem ? is this undiagnosed disease worse than PD ? so here I'm again back to square one, still suffering from SOB and fatigue after 30 minutes of playing tennis, and still worrying and searching for the causes of this physical problem.
Regarding your pulmonary function test, I'm glad your doctor said your lungs are operating within normal parameter, it means that even though sometimes you've had excessive CO2 built up, it's probably not too bad and not too often.
I'll have my pulmonary function test on Aug 3. Did they asked you to sit in a chair and performs various breathing tests via a mouthpiece into the analyzer ? Beside sitting in a chair, I hope they will also perform an exercise testing for me since my SOB only occurs 30 minutes after vigorous exercise.
Best wishes with your respiratory therapies. I'll tell you more about my up coming tests.
THANKS, Kevin Tran

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What a brilliant idea to try to get them to do your pulmonary function test just after you've run 30 minutes on a treadmill or exercised, since that's when the problem shows up. I hope you can do that, even if it's just running in place in the testing room. My pulmonary function test was just as you described. Have you read through all the threads on Mayo Connect on Mysterious Shortness of Breath, SOB, etc? Some of the people posting there have been seriously researching their own SOB issue for years and have shared their findings and things they have tried. I stopped reading them but remember one of the posters was a woman doctor. Her posts were really informative. I hope you are continuing to research symptoms and treatments of the COVID long haulers, because I think you're right in thinking your vaccination might be connected to your SOB. If the vaccination did damage your phrenic nerve to the point it caused it to stop functioning and paralyze your diaphragm, is it possible it has healed already and your diaphragm is now working? I have no idea but it might be a possibility, particularly since you're in such good physical shape. It seems strange doctors a few weeks/months ago told you your diaphragm was paralyzed and now other doctors are telling you it isn't. That doesn't really matter in the big picture… you are where you are. I hope more pieces of the puzzle will fall into place after your pulmonary function test. I also hope you're not having to cope with breathing smoke from all the wildfires. Take care! Nancy

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Kevin — please check out the reading on your pulmonary function test with the result mentioned in this article. It might pertain to your SOB. https://thedoctorweighsin.com/covid-19-long-haulers-persistent-shortness-of-breath/ Thanks for your good wishes re my upcoming therapy. I have faith it will help. Take care! Nancy

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