Phrenic nerve damage

[sam265]

I am in desparate need of help. My sister is 39 years old. She had Hodgkins when she was 16. The hospital used a broken radiation machine on her and put massive amounts of radiation into her body. Which in turn caused major damage to her nervous system. She has had a couple bypass surgeries and recently had surgery to fix a couple major leaks in her heart. They had to go in from the back because everything is stuck to her chest wall from the radiation and from previous surgeries. They were afraid that they would not get her rib cage to heal up again if they tried from the front. She did not want to have the surgery but she was told she would die if they didn't. It's been 2.5 months since the surgery. Within days she felt like her lung had collapsed. Now it looks like the phrenic nerve is damaged or paralized. Her scans show that her diaphram is not working. She is on oxygen and cannot breathe without it. Her quality of life is miserable. She cannot do anything. She is deeply depressed and doctors hear are giving her no answers but to wait. Please, Please I beg of anyone that can direct me to someone who can help. She cannot eat, drink or sleep. Her pain is unbearable. Now it looks like noone would even attempt another surgery on her. Please help me she has become immune to most drugs so pretty much no medicine works for her. Can someone please help.

[sam265]

Thank you for your help it is nice to know that we are not alone

[oakie26]

Check out the Jewish Respitory Hospital in Denver, which is reported to have state of the art pulomonology resources and physicians. My wife, who is a retired nurse, suddenly developed an inert left diaphragm and this is where we were advised to seek help. Good luck.

[Debser]

I don't know how to direct you but I am so sorry you and your sister are going through this. I don't know what area you are in but perhaps contacting the big university hospitals..john hospkins or the mayo clinic? It seems like she needs a better quality of care than what she is receiving, and there is no reason for her to be in pain. They should take care of that. Please try and contact one of the big hospitals, at the very least they have experienced pallitative care. You and your sister will be in my thoughts. good Luck