Phrenic nerve on the right side was destroyed due to radiation for breast cancer. Diaphragm is now paralyzed & taking away lung capacity. Anyone else experience this?
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Pittsburgh has two large competing medical provider systems. Before I moved out here, I couldn't figure it out, so I bought a costly medicare supplement that would enable me to be treated by both. I started with one and have switched to the other. Both providers can access all my previous medical records, which sounds much better than what you are dealing with. I'm not that far from the Cleveland Clinic and could go there. I got spoiled by the approach Mayo takes having several specialists working together in teams for each patient. Anyway, I hope things go well with your appointment on the 4th, that your rheumatologist is correct in thinking your symptoms are being caused by inflammation, and that he/she can help you. Good luck!
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Many thanks. I will keep you posted! I hope Your Thanksgiving is Mahvelous!!
Just to clarify, I don’t see my surgeon any longer. I moved about 45 minutes away, and with the advent of medical care being organized into “teams”, he was on one team and the preponderance of physicians in my new location is on another team. They can’t refer to each other and they can’t or don’t refer to hospitals and other diagnostics centers that aren’t affiliated with their team.
I’m certain it makes all in the team more profitable. In my opinion it doesn’t necessarily benefit the patient, although I realize a case could be made that it does. Going to a cohesive multi-discipline care center like Mayo is a Gold standard. But I’m not a fan of how that has been emulated in community medicine.
Well no one Commented about elevation on the radiologist report for the chest CT.
The x-ray technician would have commented on it, so that's a piece of the puzzle. When I lived in southern MN, I was really fortunate to get all my medical care at Mayo Clinic. I'm in PA now but read through my records from 25 years ago on the Mayo Clinic portal. All of the x-ray reports indicated a raised left diaphragm…which is how I know I've had this for a long time. I asked my wonderful Mayo PCP why no one had followed up on this, and she said they didn't if a patient wasn't experiencing symptoms. There is another wonderful discussion thread on Mayo Connect I used to follow on Mysterious Shortness of Breath if you're looking for other thoughts. I would bet, however, you are absolutely right thinking this has something to do with your cancer surgery. I'm not surprised your cancer surgeon doesn't want you to pursue the precise cause and absolves him/herself of any responsibility. In my opinion, you really need to know what is causing your current symptoms and what you can do about that, rather than focus on the specific triggering event. That was about as clear as mud, sorry. My paralyzed diaphragm could have been caused by a motorcycle accident, falling down a flight of stairs, flipping over 3 times in a light pickup, malaria, rabies treatment, several operations, numerous vaccinations for working and traveling in East and West Africa, various viruses, etc. It doesn't really matter to me what caused it. It is what it is, I've ruled out surgery at my advanced age, I'm coping pretty well, and I'm concerned about dealing with the symptoms as they arise. I hope that makes sense. Anyway, if you think your diaphragm is damaged and causing your problems, you can find out one way or the other by having the SNIFF test and have a neurologist test your phrenic nerve. If your diaphragm isn't the problem, you'll have to keep looking. I don't know what a rheumatologist does but will look it up. I have a pulmonologist, cardiologist, gastroenterologist and wonderful PCP on my medical team….along with a Traditional Chinese Medicine healer who does acupuncture and chiropractor, who does not use manual manipulations. I'm pretty happy with them but do miss the Mayo Clinic!
PS Wow — what a rheumatologist does is pretty cool. I've gotten really interested in inflammation, particularly inflammation resulting from leaky gut, being the cause of most chronic diseases. A few people in my facebook group attribute their paralyzed diaphragm to Parsonage Turner Syndrome. I think PTS may have something to do with the body attacking itself and the resulting inflammation irritates the phrenic nerve, which in turn weakens and/or paralyzes the diaphragm. I haven't really paid much attention to it; but what is interesting is that in at least 3 instances where PTS was the culprit the phrenic nerves healed themselves over time and the diaphragms started working again.
I'm so glad to find this post. I tried to find out what your symptoms are and couldn't find anything. I'm 77 and not very swift on the computer, sigh, It is confusing. My Pulmonary Function Tests indicate my lungs are working with normal parameters, yet my SNIFF test proved I have a left paralyzed diaphragm. I later found out from consulting the foremost authority in the country on diaphragm issues — Dr. Mark Ginsburg at the Diaphragm Center at Columbia Medical Center in New York — that my left lung isn't working at all. Thus, my heroic right lung learned over the years to compensate for my nonfunctioning left lung. There are several tests a neurologist can do to see what's going on with your phrenic nerve, including a nerve conduction test (EMG I think it us), MRI, etc. Does your chest x-ray show you have an elevated left or right diaphragm? If you think your diaphragm is paralyzed, please get a SNIFF test done to rule that in or out. Just knowing one way or the other will help you figure out next steps. I had it done in the radiology department of a large hospital. You've really been through a lot! Please let me know if you have any other questions! Happy Thanksgiving early!
So you don’t have a known precipitating event?
I see my rheumatologist on the 4th. If I can get him to help me run this to ground, that would be great. My pulmonologist is like “you’ve had cancer surgery – this happens sometimes” so there’s no point running down that road. If we can explore this on grounds it could be RA maybe I can learn something.
My pulmonary function tests are good except for one value. But that is sitting still. If I lift anything or bend over or walk uphill, I am gasping. Since I don’t spend my day sitting perfectly still, I’m not sure why that’s the only PFT scenario they do.
It’s all so confusing.
One of the things that has astounded me is how many people have paralyzed diaphragms as a result of nerve blocks being put in during surgical procedures. What happened to Do No Harm? (Since my diagnosis of left paralyzed diaphragm, I joined the Facebook Group for People with Paralyzed Diaphragms and have learned a lot from the now @ 1300 people on it.)
Please know I am not challenging you – I’m just trying to assimilate what I am learning from you and assess what pieces might align with my scenario. I’m grateful for your insight.
So how did you get that diagnosis and given your extensive research, Is it likely that prednisone would provide relief if the root cause is paralyzed diaphragm?
I thought I was having a heart attack with shortness of breath, fatigue, etc and went to a nearby ER. They admitted me to the hospital and did extensive tests to rule out heart attack, stroke., etc. Someone noticed on my chest x-ray that my left diaphragm was elevated and called in a thoracic surgeon. He ordered a pulmonary function test and SNIFF test (fluroscopy), which showed clearly my left diaphragm was paralyzed. The SNIFF test is the gold standard test to see if your diaphragm is paralyzed. Because paralyzed diaphragms are rare, it takes some people months and years to get a proper diagnosis, so I was REALLY lucky. I have no idea about the rest of your question. The only treatments for paralyzed diaphragms I've read about are plication surgery, diaphragm pacing, and nerve grafts. I do know that on my Pulmonary Function Tests to test how well my lungs are working, they spray something to see if it helps me breath more easily. Whatever that was didn't seem to make a difference for me.
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