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Phrenic Nerve damage and paralyzed diaphragm: Anyone else have this?
Lung Health | Last Active: 5 days ago | Replies (204)Comment receiving replies
I also had my right phrenic nerve sacrificed during my surgery for squamous cell thymic carcinoma. My invasive tumor was involved with both phrenic nerves, and as my surgeon tried to free the right nerve it was damaged; he opted to not attempt to disentangle the left phrenic nerve to avoid putting me on a ventilator for life. I was told the damaged nerve can regenerate at one mm per month. My surgery was six years ago and while my nerve never regenerated, I have regained some breathing ability through my body adapting.
I now have very well developed neck muscles and was told I also breathe with y newly developed muscles in my intercostal spaces (between my ribs). I tried some specialized breathing PT, but didn't see any benefits. I have progressed from needing 3 liters of oxygen 24 hours a day, to just using O2 at night for sleeping, as it is difficult to move air in the reclining position, to now just using a CPAP machine at night, which splints my right lung open so that the left lung can function more efficiently.
I haven't researched having a phrenic nerve transplant in several years, but when I did, it sounds like very difficult surgery and had a low success rate. I certainly have limitations due to my breathing issues, but I can live with them! I can't swim laps, or climb any hills, or exercise really hard - but I can hold my new granddaughter, I've attended two of my sons weddings, and life is good. I don't get the hiccups and when I shiver or laugh really hard I struggle to breathe, but I'm happy to be alive after initially being told I wouldn't survive.
Replies to "I also had my right phrenic nerve sacrificed during my surgery for squamous cell thymic carcinoma...."
Yes! Nine years! It is wonderful to hear that you are are still here and enjoying life! That is how I feel, just truly grateful to be able to experience what I still can, even if my reality is that I will not ever regain my ability to hije, bike, swim, and even just walk very far at all. I wasn't given any hope, and here I am.
@shilo14 I was happy to read your post that you went on an enjoyable vacation and hade a family reunion! Anytime you can get back a semblance of normal life is great for moral, even hearing about how others with the same health issues are successful at leading a "new" normal life is encouraging ! I plan on planting a few more perennials in the garden by the house. I work in my garden (even those further from the house) in several ways. My hose reaches about 2/3 down my garden or I tank a small tank out with me or on a good less humid day I go with out. Of course how long I stay out depends on how I feel and what method I use.
Sometimes I wonder if I am encouraging anyone or not with my life? It is great I have survived this long but can be difficult for the patients newer to this type of condition?injury? to accept this will be your new normal. I think it helps me to focus on what a gift I have been given just to be alive rather than what a struggle my life is. Most days my life is great ! It has taken me a long time to get to the point of speaking freely about my life at all and I think writing it down helps ME as much as anyone. What do you think?
@shilo14 - What a great attitude you have! I particularly enjoyed thinking about you holding your granddaughter and attending your sons' weddings. When I read that if you laugh really hard you struggle to breathe; I can totally relate. The first time it happened to me, it actually occurred to me that I could literally laugh myself to death - which made me laugh just a little more thinking about it. But so far, at least for me, there hasn't been enough laughing to present a serious risk... but I'm keepin' my chin up. 😉
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@shilo14 a granddaughter !! how wonderful I have 5 incredible adorable grandsons two of whom were born after my prognosis of 6? months...it has been 9 years!!!! Even with the struggles I wouldn't give up one day! We just have to find quieter activities sometimes.