Paralyzed Diaphragm

I remembered you had posted before so went back and read that post. I'm REALLY glad you took action to deal with your pain issues -- and hope they are helping -- and are now moving on to dealing with your paralyzed diaphragm. I did a google search on thoracic surgeons in Springfield, MO, and there are several. A few phone calls might identify one or two familiar with paralyzed diaphragms but think you're on the right track in going to Mercy in St. Louis. Please keep us posted. Good luck! Nancy

Thanks for the information and the kind words. I have talked to people in Springfield and they had no idea where I should go. I was also told that they do not do anything locally for this. I will keep trying, I am also talking to the VA, I am a retired veteran. The VA did my Spinal Stimulator.

Prior to my THR my chest xray was good. Months later I had respiratory illness so my family dr. ordered a xray and the paralysis diaphragm was seen.
The orthopedic dr. never took responsibility for it but only makes sense. They had to give me two epidurals in spine because they didn't feel they got the first one right! Very painful.
So I now have left side paralysis diaphragm. I noticed it if I do long walks. I get shortness of breath. I went to cardiologist because of symptoms. The did echo and said it was more difficult because diaphragm pushing up on it and harder to see.
All tests came back normal. Did sniff test and pulmonary dr. said if I had severe symptoms I had surgery or could correct itself. That was 2014 so far not happening. Just angry this seems a surgery error and no one takes responsibility.

Did you check in Kansas City? I am trying to find someone there.

I got an appointment with a Pulmonologist Dr. D Dmello at the Mercy Clinic Pulmonology St Louis. I called around and finally got in touch with a wonderful nurse who talked to some of the doctors there an she said this doctor is knowledgeable about this issue. The downside is the appointment is not until the end of August, which is past the start of school. This means I will have to take time off work and driving 2.5 hours. It will be worth it if I get answers.
I also went to a VA doctorat our local clinic, I am a retired veteran. This did not turn out as well as I hoped. The doctor knew nothing about this issue and said she will have to ask around to see who I should be referred to. Which is kind of depressing because I told them why I needed an appointment and dropped off my test results three weeks before my appointment.

Someone on the facebook paralyzed diaphragm group just mentioned a thoracic surgeon in Kansas City she is working with about her paralyzed diaphragm -- Dr. Sharon Ben-Orr, KU Medical. I know nothing about this doctor -- just the name.

@charlier I'm so glad you found someone and hope he/she will be able to help you. I can't believe how long it's been taking me to get appointments with doctors and for tests. I don't know if they have a backlog of patients who didn't make appointments during COVID because they were sheltering in place, shortages of good doctors or what. I'm sure some of it is due to there not being a lot of doctors who know about paralyzed diaphragms. Please let us know how it goes!

Hopefully, you will find someone who knows something about this issue. It seems to be something not a lot of doctors see. I just find it frustrating that they leave you on your own to find someone.

Does anyone else with a left paralyzed diaphragm have digestion issues? I have been getting heartburn, feeling of fullness and mild pain in my lower left abdomen. I also have trouble swallowing sometimes. I have read you can have issues like this, I just did not think I would win the jackpot and get all of them.

@charlier A lot of people in the facebook group for people with paralyzed diaphragms have these symptoms. I think there are over 750 members of the group now, all of whom have paralyzed diaphragms. It is such a rare condition, and it is comforting to connect with people who know precisely what you are going through. People in the group are so generous with answering questions, supporting each other, etc. I never saw the value of facebook before but do now. I've learned so much about my paralyzed diaphragm, symptoms, treatment options, recovery time, specialists, etc. and think you might too. I hope you will consider joining. Take care! Nancy