Pleurodesis Advice

Asked by Terri Mahon Klingler on the BHD Syndrome Facebook page:

Is anyone familiar with or had pleuradesis lung surgery with talc to repair blebs and to prevent further lung collapses? What is your experience with this procedure?

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8 Responses to Pleurodesis Advice

  1. lisa says:

    Yes. My sister had it done several years ago and has done well

  2. stevenhinchliffe says:

    See my latest post(29/08/2011). I have had the proceedure on left lung and am awaiting a date for right lung doing.

  3. Lauren Moore says:

    Hello, My father had it done several years ago to one lung before we had an official diagnosis (which I just received this week) and has had wonderful results. He has not had anymore pneumothoraxes since… I am looking into it for a future “band-aid”, but not yet as my symptoms are not near bad enough…

  4. timpark says:

    To those who have had this done: Was it done during treatment for a pneumothorax, or as a preventative measure? My pulmonologist told me to request the procedure if I go in for treatment of a pneumothorax, but wouldn’t consider doing it before then.

  5. Dorothy says:

    Hi Tim,

    I’m 58y/o and had my first pneumothorax @ 23, L side X3 and had both a chemical and mechanical pleuradesis. Chemical being the substance they use for adherence and mechanical, where they rough up the lining of the lung/pleura in an effort to make more scar tissue develop and permanently hold it together. I had no further problems for years. In 1990, age 37, the R side collapsed and I had a repeat surgery, chemical & mechanical on that side. No problems for years. The surgeon told me the only thing that would cause me further trauma, would be an accident like a bas car wreck or chest trauma of some sort.

    Well, in March 2008, the unexpected happened. I stepped on a freshly waxed floor and did a face & chest total body slam. Shortly thereafter, I developed dysautonomia symptoms and then the old familiar chest discomfort. I kept getting blown off by the docs, because they could see nothing on regular x-ray. I spent a whole day in ER, xrays PA & lateral views, inspiratory & expiratory; still nothing. I got so mad at the doc Who wanted me to jog around in the ER and would not listen, that I requested an AMA(against medical advice) form, so I could leave and find a competent doctor. After a chest CT was done, it revealed numerous small blebs and pockets of air on both lungs where they ripped away from the pleura. I have seen 2 excellent cardio-thoracic surgeons who both agree, It is more dangerous to even attempt a repair than to leave it alone and use high flow oxygen, when it happens. I was told to go home and enjoy the rest of my life. I was sent to a geneticist and learned about the BHD, also blessed with Ehlers-Danlos, and taught how to best care for the dysautonomia, which is really what gives me the most problems! Even after all of this, I can say if you have to have the pleuradesis done, YES, go for it. The provedure and technigues have changed amazingly since my first in 1976, when they left a scar from anterior midlineto posterior midline. In 1990, they left a small scar not more than 2 inches under my R arm and I was out of the hospital in a few days vs. weeks & weeks in 76. Good Luck and Have a long & HAPPY LIFE! My dad also has had bilateral repair, and has done GREAT! He is 93 y/o and just as mischievous as ever. LOL!

  6. Roxane McCain says:

    Yes, my husband is 48. He had the talc procedure done in Oct. 2009, 2 months after he had surgery for the Chromophobe RC. We later found BHD on line and asked if genetic testing could be done to confirm diagnoses. My husband has had several episodes of Pneumothoraxes on the left side. However, they were getting more and more frequent and increased in pain every time. He underwent the talc proceedure in Oct, 2009. Since that time he has still had partial Pneumos. One time was out in the boonies on a day ride. The next day he went and the doctor told him the proccedure done it’s job. The lung partially collapsed in two places and if it was not for the proccedure his lung would have likely collapsed completely and would have been life threatening. So, we are thankfull for the proceedure. He still has partial collapses, and the pain last for 2 or 3 days, but no longer, and he is still able to work through the pain. Since, my husband has had no problems with the right side, there is no plan to have the proceedure on that side.

    Thank you. Wish you all the best.

  7. liam says:

    I had it about 6 weeks ago. I had a very familiar chest pain which I’ve always attributed to really bad indigestion. I decided to go to the hospital this time after realizing I was having trouble breathing and discovered that my left lung had completely collapsed. I had a chest tube for a week but the lung was still leaking air, and a CT scan revealed multiple blebs on both lungs. The doc recommended I get pleurodesis on my left lung which I did. I was released a week after the surgery.

    Obviously, the surgery was very painful, especially after getting out of the hospital and being put on very few and very weak painkillers. I was virtually incapacitated for another week, though you could go out and do some small grocery shopping and such. During this period, sleep was by far the worst part about my experience. Pain meds, sleeping pills, alcohol and THC could barely get me to sleep for 3-4 hours at a night, if I’m lucky. If you’re having trouble with this, you best bet is to find a comfortable couch or some way to sleep with your back inclined.

    2 weeks after being released (3 weeks after surgery), I was feeling pretty darn good and was excited to get back to my life. That is, until I had an episode of intense cutting pain at the surgery site. I returned to the hospital but they found only a small pneumothorax and a new, but small, non-threatening edema (fluid in cavity). The doc thought I was having spasms at the lower part of the chest cavity which was where they attached the lung. Luckily, the pain mostly subsided after about 12 hours and I was sent home with more meds. Physically though, this literally put me back another 2 weeks and I felt marginally better than when I was first discharged.

    IT’s been 2 weeks since and I’m back on my feet feeling much better. The biggest stress is trying to get back to my normal life, but I’m paranoid that any small pain could quickly turn into a bigger one. Doing anything that’s physically exerting can get quite uncomfortable, too. With good pain management though, it’s really not that bad. I’ve found that Advil/Motrin and Tylenol can handle most pains, but I occasionally supplement it with vicodin on the bad days, especially at night.

    Even now, I still have sleeping troubles because laying down causes a lot of discomfort. Still, I’m able to sleep laying down and it’s superior sleep if you can manage to fall and stay asleep. My doc told me it may take up to 3 months before most of the pain and discomfort would go away.

    I think you should still take it easy though. I’ve noticed that physical exertion can agitate the lung. I would recommend (as I’m sure your doctors did/will) walking: taking a walk after 2 weeks in a hospital and 1 week bedridden was very enjoyable, though still somewhat difficult.

    To be honest, I can’t say yet whether this operation was worth it for me. Sure, I’ve had previous pneumothoraxes but they just weren’t bad enough for me to go to the hospital or see a doctor (well, neither was this one; it was the breathing that brought me there). If it’s an absolute guarantee that my left lung won’t collapse again, it might be worth it so long as I come out of this with no chronic pain. On the other hand, my right lung was apparently in worse shape than my left so we’ll have to see what happens there.

  8. Joyce Tantalo says:

    I had the procedure about 6 weeks ago and I feel worse then before. I was not on oxygen before and now on it 24/7. also, being on my feet 3-4 minutes causes the numbers to drop from 97+ to below 72. Has anyone else experienced this after the operation? I thought I’d be better, but I’m worse.

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