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?

31 thoughts on “Pleurodesis Advice

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

  2. 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…

  3. 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.

  4. 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!
    Dorothy

  5. 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.

  6. 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.

  7. 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.

  8. Hi, I had a chemical and mechanical pleurodesis done in Sept 2014, yesterday I went for a brief walk and them encountered pain – I knew it – I had a pneumothorax – lucky I work with medical so I was sent to have an crazy and my lung (the one I got fixed collapsed by 15%) I was sent to hospital and then sent home and told to go back if pain or breathing gets worse and go back in 25 hours to see if it has improved it worsened!!! Has anyone else encountered this?

  9. I have had 3 pneumothorax’s in the last 8 months and im a 28 yr old male that is very fit that runs marathons. After my first collapse the docs let it heal on its own, then in sep 2014 it happened again so i went in for mechanical pleurodesis. all was well until 30 DEC 14 and it happened again, this time i got mechanical plerodesis and wedge resection done. after 2 weeks in the hospital i still have a small pocket of air on the top which the docs do not want to do surgery since ive had 2 in 4 months.

  10. How long does fhe procedure normally take? My mom has to have it and its freaking me out!

  11. Hi, i just had this done two days ago, still in the hospital, and im concerned because i feel a lot of pressure on my left lung. I wouldnt describe it as painful, just feels as if its being pushed on. Im a 21 y/o male and had this done in responce to a 3rd left side pneumothorax, this one was roughly 20%. Im just curious if this pressure is typical of the operation or if anyone else experianced a similar sensation during their recovery. Thanks.

  12. Hi everyone, I had the mechanical pleurodesis performed on my left lung after having a second left spontaneous collapse. I have a history of a complete collapse on my right as well, but have yet to have another on that side. I am now 19 years old, this started right after I turned 18. I am almost 2 weeks out from my mechancial pleurodesis and blebectomy. So far the wounds from the operation have begun to heal up nicely. I play collegiate basketball, so I am trying to get back on track for the season. I am finely able to comfortably jump again. I don’t feel comfortable at all with playing, call it me being paranoid. I feel as if I almost have my full breathing capacity back. On the spirometer I can push the ball all the way to the top again. I am having a weird numb/sore feeling in my left abs and left side. I don’t know how long this will last, but it seems to be improving. This surgery is not by any means fool proof, there are bound to be some incidents, but for the most part I was told 80-85% of patients report no problems after FULL recovery.

  13. I suffered a spontaneous pneumothorax back in March, apparently brought on my RA and methotrexate. since then I’ve had several opps with the pleurodesis being the first. it didn’t work fully, probably because I was still taking the methotrexate, which is an anti-inflammatory medication. subsequently, i’m still having problems and have a chest drain (flutter valve)inserted. The operation was quick and painless, but please make sure all current medications and conditions are taken into consideration.

  14. I was in a car accident in 2012. My right lung partially collapsed and my left lung fully collapsed. Within three months, my right lung fully collapsed and I worked all week just thinking I was getting sick. I felt like an elephant was on my chest. I went to the hospital that weekend and had a chest tube placed. I was released from the hospital and 7 months later my right lung collapsed again and I was told it hadn’t through x ray but I could feel flopping in my right side when I would bend over then stand so I went to the er because my results for a blood clot in my lung were borderline. They did a CT scan and found a 40% collapse and admitted me with a chest tube which I ended up keeping in for about a month and a half at home until my pleurodesis could be done. While in the hospital following the procedure, the doctor removed the two large tunes and my lung re-collapsed. They were going to insert the tube under CT scan but it resolved on its own (thank god!!!) Currently I’m on my way to the er for very similar pain which is a year after the procedure.. by the way I was 22 when I had the first collapses and 24 when I had the surgery.

  15. Hi I had spontaneous pneumothorax just over four weeks ago now I had right vats bullectomy and talc pluerodesis/pleurectomy I didn’t really get told anything about how I would feel I’ve got pain down to a minimum now but when I touch my chest it feels strange like a numb feeling and I have a feeling in my right side like my lung is gonna fall outta my chest are these normal feelings or do I need to contact hospital again

  16. Hi. I had 9of these dam things and 5 small lung collapses.what a nightmare the talc operations were painfully.this was between the age of 16 to 21 I am nearly 42 now and somedays I think my lungs are collapsing.

  17. I go in for a talc pleuradesis in 3 days. Have already had 3 thoracentises. 65% of my right is collapsed. With modern anesthesia and meds, is this still a painful surgery and recovery? I’m scared to shit as this will be my 8th procedure. I’ve had heart surgery twice as well. After the plueradesis, I will have an AICD implanted too. 21y/o.
    The pleural effusions are directly linked to my heart condition (genetic hypertrophic cardiomyopathy) and previous endocarditis. Does anyone know the process for getting a DNR order? This shit is getting old fast. Since I have pre-existing heart troubles anesthesia may lower my pressure too far (as it has many times). Any likelihood that I’d die on the table?

  18. I am recouping from talc pleurodesis procedure almost 3 weeks ago. My right lung totally collapsed 6 years ago, after a chest tube insertion it reinflated.
    Again my right lung collapsed at 40 percent. Chest tube for 4 days then talc pleurodesis. Hospital stay 7 days, been home a week and semi comfortable. All in all its a painful situation, chest tube insertion and surgery recovery. My surgeon advised the problem fixed and I pray it is. I am almost 70 years old and dread the thought of another collapse. Request a surgeon that is very experience in this type surgery.

  19. I had both lungs collapse in 1975 at age fourteen, after surgery to remove the cystis on my lungs (they could not remove all of the cystis) they both collapsed again and they performed pleurodesis with talc. The only problems I had were shortness of breath and occasional chest pains. Recently I have been diagnosed with pulmonary hypertension most likely from the lung disease.

  20. Hi! I just underwent mechanical pleurodesis on Monday, after a Right recurring pneumothorax (chest tubes kept failing..mostly because I have a very hard time staying in one spot for long..the tubed almost always twist and migrate) I was in the hospital 10 days before that with various chest tunes in different sizes and locations.
    I also have had a tension pneumothorax while 7 months pregnant in 2009…omg..I earned some serious fierce credits there!
    I am in some pain from the pleurodesis but not too much! The worst part for me was the chest tube in the hospital after surgery. I am a tiny girl (95 pounds, 5’5″) and the tube was as big as a garden hose! It was so uncomfortable. Finally, the nurse gave me a hand controlled pump of diladid. When I had little pain, it also erased my anxieties.
    I had a lot of fears about something going wrong while in surgery..but I have not read any accounts of such. It was hard to be away from my kids as well..but if I would have had the surgery right now, it would have saved me from 10 days prior in the hospital waiting for the hole from the bleb to heal.
    I recommend the surgery to anyone..it’s not bad! However, if I decide to have my left lung done, I will positively insist on a epidural since the pain immediately post surgery in the recovery room was unspeakable.

  21. yes do the surgery ! after my 1st surgery I said 2 myself, I’m NEVER doing this again. PAIN, pain, and more pain. Well my 1st surgery failed and I started having pneumo’s again. Slowly They got worse and worse and more frequent. Until finally we decided to do a second surgery. Which went a lot better and less recovery time than the first. a lot less painful too, not sure why ha. I’ve been fine since. first surgery in 2003, second in 2005 or 2006. Definently a painful and humbling(if that’s a word) experience. Really changed my outlook on life, as I was 16 and invincible when it all first started happening in 2002. And now I have epilepsy, started in 2011/12. fun fun!

  22. I am 18 years old I had my left lung collapsed I got a chest tube put in and my lung inflated I got out of the hospital and was out for 16 days and had it happen again so they preformed surgery I had 3 blebs on my left lung that were removed and my lung was almost like sanded and burned is what the doctor said they did to get it to stick back up I just got out yesterday and I am in the worst pain my back feels like stuck I can’t barely move my chest hurts I’ve eaten 10 of my pain medicine and the pain will not go away I was just wondering if anyone could help me and tell me if this is normal or how they felt after having the surgery and how long it takes to feel better and be able to walk without pain I have a 16 month old daughter and I can’t hold her I can’t play with her and it’s killing me I don’t know if I should go back to the hospital or if what in feeling is normal?

  23. I had 7 spontaneous bilateral pneumothorax’s before having VAT’s a month ago. Since then I have coughed up blood for a week – said it was due to an infection, did a bronchoscopy which showed several oozing holes of blood, moderate bilateral pleural effusion, pulmonary edema and my surgeon said the one lung has not adhered to the chest wall, which they called this a pneumothorax. Already?!? What should I ask, suggest? Any direction any of you can give? Thank you so much! Dee

  24. I had my second pneumothorax about 3 weeks ago. I was 20 when it first happened and 26 now. I was sent in for surgery four days after my pneomothorax. Everything seemed fine after the surgery but then that night i began to bleed heavily internally. I was rushed back in for a second surgery and then had two blood transfusions the following day. Ive now been out of hospital for a week and am beginning to feel better. The doctor did warn me that there could some pain in the chest for a few months following the surgery

  25. I am a 32 yr old male and exercise heavily 5 times a week and am very fit. In Dec 2016 I had a spontaneous right pneomothorax. Went to hospital and had the chest drain the lung inflated then recollapsed but then inflated again. Dr recommended surgical pleurodesis but I refused hoping it would recover on it’s own. Two weeks later at the follow up my lung had partially collapsed again but with no pain symptons.
    I had surgical pleurodesis and tetracycline chemcial inside. Three days on a morphine drip and the pain was very high but the drugs were pretty good at controlling. I left hospital after 5 days as the bleeding had stopped lung was staying inflated without the drain.
    For 4 weeks after the op I was in a lot of pain and was gobbling tramadol, paracetamol and anti inflamatory pain killers like M&M’s. Movement was very difficult and really just wanted to spend all the time propped up in bed. It felt like forever at the time but in hindsight the recovery was very fast and every week was so much easier. 5 weeks after the operation i was able to walk the 100m to the shops (very slowly) and 6 weeks I was walking around completely fine. After 8 weeks I went on my first jog and now 10 weeks after I just did a 10km run in 46 mins :).
    Medically the lung is 100% fine as the bleb and lung are sealed but and I still do get a very slight amount of pain upon full inflation of my lung but it’s almost entirely better and easier every day. I do still have some nerve damage across the front of my chest where the skin is sensitive to the touch but it’s getting better and Dr said it will eventually disappear.
    Deep sympathy to anyone who has to have this done, it is a very uncomfortable and painful surgery. But my recommendation is to do a lot of research on who your surgeon is if you have the ability to choose. This is an op that is relatively easy to do but hard to do well. Make sure you get the best person available it is a serious procedure and technology has advanced greatly in the last few years and the surgical holes (trauma) can be greatly reduced with smaller instruments.

  26. I had the procedure on my left lung in 2014, after a collapse and a LAM diagnosis. So far no problems in that lung. This past May I had it on the right lung after a collapse. It has been less than a month. Now I’m suffering from a cough but it is only when I leave the house. When I’m home and laying down I do not cough. I’m terrified to go back to doc as now I fear the worst and more collapses.

  27. I’m a 58 year old female. I had left talc pleura desist in 2002. I continued to have the recurring burning chest pain. I was told I was crazy by multiple doctors. In 2011 the lung completely collapsed again, but a large chest tube connected to a vacuum for over a week reinflated the lung. Following bronchitis in 2014, I suffered a right multiple blew rupture. I spent 3 weeks in intensive care. One week my blood ox level stayed below 40 percent, and my family was told if I lived I would be a vegetable. I regained consciousness and had right pleurodesis. It took two weeks after surgery for the holes to seal. I have had numerous small pops since, and spend a week in bed with oxygen when it first happens. Now I have constant painful diaphragm cramps. Nothing more can be done. The procedure is a lifesaver, but if you continue to have symptoms, don’t let anyone tell you it’s your imagination. Had I bucked the medical community after 2002, my outlook would be better. I was finally given an mri. It showed childhood blebs, exposure to chlorine large blisters, asbestos exposure, and smoking damage. Get checked for alpha antitrypsin too. Yes I am ms and asthmatic. Even with all this I am hanging in there, though can no longer work. Good luck and keep hammering the doctors if you have complications.

  28. After several spontaneous pneumothorax and chest tubes on both lungs (blebs) I had pleurodesis done to my right lung. Three weeks later my left lung collapsed and I had it done to my left lung. It is a very painful surgery. It felt like fire in my chest. I also had a lot of rib pain where the chest tubes were. I had to be on painkillers and pretty much helpless for about a month. Right after the surgery I felt really congested and a slight heaviness in my chest. I don’t know if it went away or I just got use to it. Slowly you should feel a little better each day but it does take a long time to get back to your old self. It has been almost 20 years ago and I feel fine. I am really susceptible to URIs and bronchitis if I catch a cold and I have to start antibiotics immediately but other than that I have done really well.

  29. I had a pleuerodesis with talc in 1983. I seem to get pleurisy a lot, but overall, doing well.

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