Cavity removal surgery in NYU

Posted by helen1000 @helen1000, Aug 21 11:42pm

My pulmonologist suggested me to do a surgery to remove my URL cavity after two months antibiotics treatment.

I see many review about surgeon Dr Mitchell in National Jewish Health. Anyone ever had experience about the surgery in NYU Langone? The chief surgeon is Robert J. Cerfolio,. He is a pioneer in Robotic surgery techniques and performed 17000+ surgeries in USA and internationally. Definitely a legend. But I never see any comments regarding him or NYU.

Any input will be much appreciated.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Rick | @rstel7272 | Aug 22 7:29am

I had the same recommendation, had a consultation with Dr Mitchell. I declined the surgery for the time being.

lvnl | @lvnl | Aug 22 7:30am

I don't know about pulmonary surgeons but for what it's worth the bronchiectasis/MAC program there is excellent - my Dr there is Dr Addrizzo-Harris. And I have had other surgeries at NYU, all top notch.

helen1000 | @helen1000 | Aug 22 8:02am

In reply to @rstel7272 "I had the same recommendation, had a consultation with Dr Mitchell. I declined the surgery for..." + (show)

Yes Rick I think your decision is wise. The surgery itself has risks, and is not a guaranteed cure. I think conservative approach is always not bad considering your situation, as your MAC been negative for quite a while, you definitely made a good decision!

helen1000 | @helen1000 | Aug 22 8:04am

In reply to @lvnl "I don't know about pulmonary surgeons but for what it's worth the bronchiectasis/MAC program there is..." + (show)

Yes LVNL, that is what I thought , NYU is a top notch university/medical center. I really appreciate your feedback! I am happy that your other surgeries there are all successful! 🙂

Toni D. | @tcd518 | Aug 22 9:21am

Helen, I'm sorry you have such a hard decision to make and wish you a successful outcome, regardless of what you decide. Can you get a second opinion that might be helpful? Best of luck.

helen1000 | @helen1000 | Aug 22 9:31am

In reply to @tcd518 "Helen, I'm sorry you have such a hard decision to make and wish you a successful..." + (show)

Yes Toni. That is an excellent advice. I am quite sure NYU is one of the best, and the protocol they provide is excellent. However it is always great to get a second advice considering my cavitary disease. As I am still working, I just feel it hard to get out of my work and travel around. I have been struggling with the time more than the other factors.

alyssa999 | @alyssa999 | Aug 27 11:14pm

Sorry to hear about your diagnosis, I'm currently 25 years of age and just been diagnosed with Mac cavitary disease a few months ago. Started antibiotics no mention of surgery yet which surprises me as the cavity is 9.2 cm by 9.2 cm, but I also would decline surgery as there are so many risks

helen1000 | @helen1000 | Aug 28 6:30am

In reply to @alyssa999 "Sorry to hear about your diagnosis, I'm currently 25 years of age and just been diagnosed..." + (show)

Hug hug!! I belive your cavity will shrink after you use Arikayce, many successful stories, some patients' cavity shrank from 10 cam to 4cm, as I saw. As you are so young, your healing will be quite faster I am sure! Surgery (minimally invasive) has certain risks but it has promising outcome as well. I will follow my doctor's advice! But I will seek second opinion too! Good luck to all of us in this forum! I hope everyone finds the customized treatment plan and has a quick recovery!!

I happen to see an article that patients who are sensitive to Macrolide antibiotics like Azithromycin have a cure rate from 50% to 90%! Cavitary disease has at least 50% cure rate and nodular disease at least 80% cure rate. So MAC is curable to most people, good luck to you!

Rick | @rstel7272 | Aug 28 7:30am

In reply to @alyssa999 "Sorry to hear about your diagnosis, I'm currently 25 years of age and just been diagnosed..." + (show)

If you have not developed scar tissue in or around the cavity, antibiotics should be successful. It's usually chronic infections that may have surgery as the cavity tends to trap things

helen1000 | @helen1000 | Aug 28 7:36am

In reply to @rstel7272 "If you have not developed scar tissue in or around the cavity, antibiotics should be successful...." + (show)

Yes my surgeon says he have been people with fungus inside the cavity. But my cavity is empty. Probably antibiotics won't get into it as well. But I will see how it goes.