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Mom-Advanced Cancer - Phrenic Nerve Damage
Cancer | Last Active: Oct 18, 2022 | Replies (5)Comment receiving replies
Hello @mattchi and welcome to Mayo Connect. I am so sorry to hear of your mom's health problems, but I do appreciate your reaching out and seeking information to help her. Having an advocate looking out for you is so important to anyone who is ill, and you are doing a good job at seeking the best for your mom.
It sounds as if your mom has a combination of lung issues, and the paralyzed diaphragm is just one of the issues. Is that your understanding as well?
On Connect, there are several discussion groups regarding a paralyzed diaphragm, here are the links. As you will see, the last link deals specifically with Phrenic Nerve Danage,
– Paralyzed Diaphragm https://connect.mayoclinic.org/discussion/paralyzed-diaphragm/
– No cause found for recurring right hemidiaphragm paralysis https://connect.mayoclinic.org/discussion/no-cause-found-for-recurring-right-hemidiaphragm-paralysis/
– Phrenic Nerve damage https://connect.mayoclinic.org/discussion/phoenix-nerve-damage/
Please know that it is always your right to seek a second opinion for your mom. A virtual appointment might be wise since she could not physically attend another appointment right now. Have you considered this possibility?
What suggestions are the doctors making regarding the possibility of her condition improving? Is she aware and able to make her own decisions at this point?
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Hello Teresa.
Thank you for your quick response. Much appreciated. Right now. Unfortunately. It feels like the doctors are stating that the paralyzed diaphragm is the main (and only) reason for her difficulty breathing and being on the ventilator. We are hoping and thinking that there could be other contributing factors involved. We are hoping to explore other options and ideas such as:
1. Could the compression of the phrenic nerve be more an inflammatory response related to the recent chemo treatment?
2. Any chance this could settle down more quickly than we would expect given the onset appeared so sudden?
3. Is there any value for the role of IV steroids if any of this is related to inflammation?
4. Any chance she has had a paralyzed diaphragm for a while and we were unaware?
5. Possibility of diaphragm pacing system.
We have yet to see a pulmonologist yet.
The only real thing they have told us thus far is that we can attempt to give her more chemo/immunotherapy/gene therapy to attempt to shrink the tumor to relieve the pressure on the phrenic nerve. But they feel this would most likely require a trach and external ventilator for breathing support.
My mom is on some sedation medicine right now. So she is somewhat aware and responsive. And can give yes and no answers. But we know as her children, she does not want machines keeping her alive. It is difficult.
Thank you again for any support. We are hoping to talk more with the doctors and gather more information to help make the best decisions moving forward.