Just as "wrian" said in the previous forum on this issue, I have been diagnosed with the same. Like you and wrian, my Drs don't seem to know what to do. So far they say that there is no treatment available.
In fact, my internist last week told me I would be "fine" without the function of th elower lobe of my right lung. But like Wrian, I had/have exteme difficulty laying flat on my back, shortness of breath with exertion, and other posturally related shortness of breath.
Again like wrian, I'm wondering if others have had the difficulty in being diagnosed and what further options they have had. It has seemed to me hopeless in geting any further understanding, treatment, from my DR. It seems I have no way of making them understand the "difficulty in breathing" the "shortness of breath" to the point of definitely interfering with life including sex, and the discomfort.
Like wrian, I'm just desperately trying to get some help, knowledge, advice? I need information to get to a pulmonologist or neurologist????? Thanks.
You should definitely see a specialist dwg. Usually people with unilateral paralysis don't have much problems with breathing, but some do. If that is the case, then there are a few options out there. One being surgical plication of the affected side...the surgeon essentially tacks down the affected side of the diaphragm so that it doesn't move up into the chest cavity thus allowing for maximum lung expansion. With normal breathing, the diaphragm moves downward. With paralysis, the affected side moves up into the chest as you are taking a breath, reducing your lung volume. Plication is helpful to some...it might be worth talking to your doctor about. Do you also have problems with sleep? You can also use a BiPAP machine, much like a CPAP machine that is used for sleep apnea,. BiPAP is a little different in that it assists your breathing and takes alot of work of breathing away as well as allow for deeper breaths while sleeping instead of shallow breaths. I was on BiPAP for quite some time and that did help. I have bilateral involvement which resulted in very severe breathing problems. I am on a vent now...Remember I am a severe case with bilateral instead of one sided involvement which affected both lungs.
I hope that you get somewhere with all of this...Sunny
Thanks Sunny. The pulmonologist suggested (but did not necessarily reccomend) the surgery you reference right out of the box. I convinced them to at least LOOK at the phrenic nerve track, and that's when they did an MRI of my C-spine and found the congenital narrowing. So now I probably should go see the neurologist . . .
Good for you...sometimes you have to nudge the docs into looking further. Yes, a neuro is the way to go now, at least he or she will take a look at your nerve function. I had an EMG done which showed muscle problems, not nerve problems. Good luck! Sunny :)
My husband has been diagnosed with a paralyzed diaphragm. It was also noted that his blood oxygen level is very low. Can you tell me if you have found any relief to your shortness of breath, what the treatment may have been and also if your blood oxygen levels were low? I am hoping you found relief. The doctors are not talking about a bi-pap machine which he was on years ago for sleep apnea. Any suggestions you can give me will be appreciated. Thank you. EmJa
I was diagnosed with a paralyzed diaphragm after a industrial accident that crushed my chest. I first notice having difficulty laying flat after leaving the hospital when I tried to lay in a bed at home, I have been sleeping in a recliner for over 5 months, But I have finally found hope!!! My first pulminologist told me basiclly to nothing could be done and have a good life, Being like others here I refused to give up.
I am now seeing a new doctor and have begin pulminary therapy. They are teaching me to use the breathing exercises that are helping. There is hope the diaphragm will respond, but if It may never. Either way I am learning how to adjust. I was put on CPAP not BiPAP, my oxygen level are dropping even when awake, Currently I am not allowed to do much but even walking or talking require me to focus on proper breathing to keep the oxygen levels up.
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