Fibrosing mediastinitis

We tried that two years ago and for some reason never heard back. But I actually called today and got a doctors name that we could see.

Did this help? My husband has had this for 7 years and has two stents. Right now he’s only been told to take baby aspirin and vitamin E. We’re trying to figure out something else he could be taking to help.

Hi. There are two specialists I highly recommend who worked closely with Dr. Lloyd and who have been lifesavers to me: Dr. Thomas Doyle, a pediatric cardiologist at Vanderbilt Children's Hospital. He has performed three heart caths / lung stenting surgeries on me and is expert on the impact of this disease. In addition, pulmonologist Dr. Tufik Assad, who studied under Dr. Lloyd. He is with the Williamson Medical Group in Franklin. He and Dr. Thomas have worked as a team on my care. Hope this is helpful.

Thank you! Dr. Doyle did his SVC stents about 7 years ago. We need to make another appt with him. I’ll be reaching out to the pulmonologist too!

Yes. Diagnosed in April 2021. I had histoplasmosis in 1989. Last 10 years I have had increased pain and shortness of breath. Since January of 2020, I have been on a roller coast of health issues that are connected (or presumptive connection to my histo). No treatment possible. It is too far advanced per VA doctors.

@jaselong, have you considered a second opinion? Have you ever done pulmonary rehab?

How are you doing now? Are you currently doing any drug treatment or have had any surgery?

Hi, just wanted to check in and see how everyone is doing now?

Good afternoon. My daughter was diagnosed with FM In June of this year. As of now, she has none of the issues that I see in this group. However, she has varying degrees of pain in her back and now chest. Today, the pain was so severe she could not work. Has anyone had this pain that can share their experience. Also, We have tried the Cleveland Clinic, Mayo Clinic and Vanderbilt University. We can't get her in to any of these until March. Based on her pain today, I would like to somehow get her to the front of the line. Does anyone have any thoughts? Thank you all!

Hello @pcipriano and welcome to Mayo Connect. I can understand your concern for your daughter. From what I've read, this is a rather rare disorder.

It certainly would be a good thing to have her seen at one of the medical facilities you've mentioned. It is frustrating to have to wait for an appointment, especially when there are active symptoms.

Have you considered calling back each of these facilities on a regular basis to see if there have been any cancellations so that your daughter can get an earlier appointment? Many of us have done this and it can often be helpful.

In the meantime, I suggest that you learn as much as possible about this disorder and try your best to relax (easier said than done, I know)!

If you are comfortable sharing more, how was your daughter originally diagnosed with FM? What sort of symptoms was she having?