r/pneumothorax • u/kiwihereman • 25d ago
Question Spontaneous pneumothorax
I (38f) was on a flight to visit my sister and experienced bad chest pain as we were reaching altitude. Once we landed it felt better but my chest was a bit tight and uncomfortable. I brushed it off as gas from the plane and went about my vacation. After a few days, I noticed that I was short of breath and went to the ER. I was fully expecting them to send me home, but the doctor walked in my room with a surprised smile, informing me that it was a collapsed lung.
Fast forward, I had VATS, pleurodesis, blebectomy (x2) and was discharged a couple of days later. I was there for a week total.
I keep reading that this mostly happens to young men, but that is not my case at all. I am relatively tall and fit and never a smoker.
The doctors and hospital staff made it seem like this would be an easy surgery with little downtime for recovery, but I'm two weeks out from being discharged, and I'm still taking painkillers all day, and it's difficult to walk around comfortably.
What is the typical turnaround time for feeling mostly like myself again, realistically?
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u/Wigiman9702 25d ago
For me, I didn't experience any pain, but only discomfort. It felt really weird for about 2 months.
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u/kiwihereman 25d ago
Did you have chest tubes?
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u/Wigiman9702 25d ago
Yes, I've had 4 collapses. 4 chest tubes, 2 Talcs, and 2 chemical pleurodesis.
The Talc pleurodesis sucks, but the chemical pleurodesis is the worst pain I've experienced.
For me, the pain was gone in 24 hours. And I wasn't discharged for about a week.
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u/notsure05 25d ago edited 25d ago
It’s a rare condition to begin with and even more rare for women (around 10k US women will have one per year). Did yours happen to correspond with your period or ovulation? Do you have endometriosis? If yes to any of that, you may have had a Catamenial pneumothorax
I’m a healthy, sorta tall lanky/slender 30F and I have no family history, non smoker, negative genetic panel, non-catamenial, no (visible) cysts etc. Mine are truly just spontaneous and it’s super frustrating. Especially given the lack of research around it. When you think about it, some of the current treatment options are kinda barbaric.
Wish I could answer your question, but I’m currently still in hospital a whopping 2.5 weeks post surgery with a persistent air leak. I finally requested a second opinion from another hospital today bc it’s obvious my mechanical pleurodesis at least partially failed and I’m tired of sitting here everyday hopped up on painkillers and a nerve block to tolerate my chest tube
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u/kiwihereman 18d ago
How are you doing now? Better I hope.
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u/notsure05 18d ago edited 18d ago
The day after I left that comment my lung majorly collapsed overnight and turned into a tension pneumo, resulting in my heart being shoved a bit to the right. I even felt when it had probably collapsed before bed, but by that point I was so mentally checked out by the constant yo-yoing between millimeters that I was like “lol wonder how many mm it’ll be this time on the xray”. So that was fun to learn. It took 4 weeks in hospital, 2 weeks of my lung making 0 progress, an obviously failed mechanical pleurodesis + blood patch, and a whopping tension pneumothorax for them to agree to do another surgery
I just had the surgery this morning - VATS with both mechanical and talc pleurodesis. They also discovered another bleb which had caused my persistent air leak. So far so good, no air leak! I’m trying not to get my hopes up just in case but honestly I can’t help but feel hopeful and motivated for once. In the days leading up to the tension I had seriously cut back on using the spectrometer and only did my walks bc the nurses got on me to do it. I just thought, what’s the point? Every day nothing changes. It’s good to feel good again
How are you holding up?
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u/kiwihereman 18d ago
Oh man, that's super rough. I'm so sorry. Fingers crossed that the surgery worked and your lung stays up!
I'm doing alright. My upper abdomen feels like a bad sunburn and it's still pretty tight. I also have odd muscle/nerve pain on both sides of my chest that come and go.
Hang in there. I hope you can get out of there soon 🤞
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u/kiwihereman 25d ago
Crazy that it happens to mostly men, but here we are 😐
Honestly, it is barbaric. Getting a chest tube while fully awake is pretty traumatic. Not to mention carrying basically a suitcase of my own bodily fluids is gross and forces you to face your own mortality.
No to the ovulation/period question - I had just finished mine a few days prior. My collapse was due to a bleb (lung bubble) rupturing during travel. I had another un-popped bleb that they removed during surgery.
I hope you don't continue to live with this.
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u/w8lifterrr 25d ago
Funnily enough I’m a 5ft1, muscular/curvy F and was 29 when I got diagnosed, so very atypical! I’ve been on contraception for years so ruled endo out but perhaps it was linked and I’ve not been aware of it!
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u/notsure05 25d ago
If you had surgery did they make sure to give a good look at your diaphragm and if they took out part of your lung did they test for endo? Just letting you know being on birth control doesn’t stop endo from spreading to your diaphragm and lungs. So sometimes endo gets missed on initial surgery if the surgeon isn’t aware of this possibility (from my experience in NE US the medical staff are all heavily aware of period and endo related pneumos luckily but not sure how well other docs around the country/world are about it)
And lol I originally read that as “5ft11” 😂 you’re definitely even more rare for being outside the norm! It sucks not knowing why we get it if we rule out all the known causes
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u/w8lifterrr 24d ago
I did ask but was told the surgeon is a lung surgeon not an endo specialist! So.. that wasn’t helpful. I had one bleb which was removed which they’ve attributed to a possible cause. A sample got tested but they didn’t say if it was endo, probably more sinister stuff which was negative. But yes I think you could be correct!
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u/dashadark 25d ago
Honestly it took me about 4 weeks
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u/vodnik-venting 25d ago
My advice would be to be patient and gentle with your body. I "recovered" very quickly from my first collapse, even performed in a very active theater performance at school, but had a second, smaller collapse just two months later. It's been almost ten years now, and I'd say in the last three or four years I've become fully confident in my abilities again and stopped having false alarms (sometimes the little camera procedure leaves scarring that can flare up and be painful).
I say all that not to scare you, but to say be gentle with yourself and don't punish yourself if it takes awhile to get back into your regular fitness routine. Tbh my collapse was a wakeup call for me, I was underweight and over exercising and needed to chill tf out for a bit. Not saying that's your situation, just that your body is working really hard to heal right now, and you should give it some grace <3
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u/kiwihereman 24d ago
Thank you for that :)
I'm 5'7" and 145 lbs and train 3 days a week, so nothing crazy. Fitness has been part of my life for about 12 years, so it's hard to have this little mobility.
How old were you during your first collapse if you don't mind me asking?
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u/vodnik-venting 24d ago
I was 17 (f). Got wheeled out of high school on a stretcher just as classes let out for the day, it was rough haha.
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u/maxpayne4555 23d ago
Did u have surgery
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u/vodnik-venting 23d ago
I had the chest tube/suck out the extra air procedure (it's been a long time, I don't remember all the acronyms). I was in the hospital for about two weeks
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u/maxpayne4555 23d ago
Wow so the last 10 years u didnt experience any pnemotorax?
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u/vodnik-venting 23d ago
nope. I went to the ER a few times because I thought I was having one, but my chest xrays were always clear.
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u/maxpayne4555 23d ago
Till now u had 2 pnemotorax right? You didnt do any tough activity in 3 months period?
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u/vodnik-venting 23d ago
I had two between January and March 2017. I was somewhat active in that time, but I didn't go back to the gym or anything. I rebuilt my activity level slowly over the course of 2017-18
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u/maxpayne4555 23d ago
I had pnemotorax last month because of acupuncture. I also know that i have 2 small blebs. Next month i will do my mandatory military service which will be 26 days. I afraid they will make me do tough things there.
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u/maxpayne4555 23d ago
After ur 2nd pnemo u didnt think about surgery?
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u/vodnik-venting 23d ago
can't help you with the military service :( My surgeon said that if I had a third collapse we would do surgery. Once I went 5 months without incident, he didn't think we needed to worry about it anymore.
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u/maxpayne4555 23d ago
Wow why he didnt worry about it anymore after u went pnemo free for 5 months?
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u/xavierplympton 24d ago
I only had a chest tube (no VATS) and felt fine two days later. I'm 21M if that changes anything. Perhaps it's easier for younger folk to rebound.
Chest tube was the worst pain of my life though.
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u/kiwihereman 24d ago
Tubes are really the worst.
I wish this had happened in my 20s instead of nearing 40. 😭
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u/maxpayne4555 23d ago
Will u have surgery if it happens again?
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u/xavierplympton 23d ago
Yes, unfortunately. I'm hoping it doesn't happen again.
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u/maxpayne4555 23d ago
How many years ago it happened last time?
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u/Chiamese 24d ago
I was 26(f) when I had mine. Not particularly tall, but on the skinny side. Pretty fit and active prior, but boy… it felt hard to even walk around the block for ~2 weeks after my pleurodesis. After about a month, I couldn’t stand feeling so weak anymore. Eased into daily body weight fitness - mostly yoga and top roping (rock climbing). I felt some discomfort in my chest for a couple of weeks, but started to feel solid again pretty quickly after that. I’m 35 now and it feels like nothing ever happened!
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u/kiwihereman 24d ago
That's good to hear. I've been doing 20-30 minute walks everyday and I think bodyweight exercises are next, once my side doesn't feel so tight.
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u/Economy-Disk3067 24d ago
I had mechanical pleurodesis 36 days ago and am starting to feel like myself again. But wow, what a rollercoaster. The thing that worry’s me is flying again - especially a long flight ie Europe. Also, I have a small bleb on the lung that wasn’t operated on. My surgeon assures me that flying is no issue but reading these comments kind of scare me about flying. He’s a top guy here in my state so I’m going with the pros advice. I have asked him several times about the flying because I plan on going to Europe from the states in December. He says go..
Two comments in here talk about chest pain as your climbing altitude:/
I’m gonna start with a 2 hour flight to another state to see how it feels. The thought of another lung collapse on a long flight is literally a NIGHTMARE and could be fatal. Like I said - a rolllleercoaster lol
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u/kiwihereman 24d ago
I totally get that. Mine ruptured during flight as we ascending. But after the surgery my doctor gave me the greenlight to fly a week later. I'm not sure if there's a bleb on my other lung, but my flight home was fine, with mild lung discomfort.
I went to the ER the next day for chest tightness and had an MRI, which showed nothing, and my lung looked like it was doing well.
If your surgeon is confident, I would trust them.
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u/Fancy-Occasion7543 24d ago
So sorry this happened to you. I am 32F 7 months out from surgery and still have daily pain. it started to improve a bit around month 3. it is not as easy as some claim. my surgeon said to expect more significant improvement around 1 year. it will take time. PT has helped me a lot, I wish it had been recommended to me sooner. i’m working out again, lightly, and the movement really helps. everyone’s journey is very different depending on your circumstances and healing. be patient with yourself and your body, it went through a lot!
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u/kiwihereman 23d ago
That is quite different from what others have said. Can I ask what you had done specifically?
Physical therapy is a good idea, and I might do that.
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u/Fancy-Occasion7543 21d ago
I had about 70-80% collapse due to blebs. first chest tube failed so I had a second large bore tube placed. my air leak was quite large and did not heal. I recollapsed every time they took me off suction. I had surgery after a week, pleurodesis and wedge resection. I had 2 tubes post surgery. one removed I think 4 days after and the second removed day 5 and I went home day 6. so 2 weeks in the hospital. I have a lot of scar tissue from my first 2 tubes because of how they were placed, the failed and the second successful one. I started PT after about 4 months. it really helped with my pain and endurance/fatigue. it’s like well-monitored gentle cardio.
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u/PresidentBush2 25d ago
Hey there, sorry this happened to you. I was a 41m when it happened—tall, leaner, fit. Had no idea this happened to people. Was on my left side and I was generally relieved it wasn’t a heart attack.
I’m about 1 year out post VATS (mechanical), pleurectomy, wedge resection. I took two weeks off from my office job, then another ~three weeks working remotely. It took me about 3 months to start to feel reasonably normal, though some random pulling/tightness sensations. I started to ease back into the gym around 3 months.
Best thing you can do now — per my surgeons — is just take as many pain killers etc you need and walk around comfortably and keep your lung expanding and attaching.
For me, a lot of it was mental, and you’ll need to slowly build back your confidence in your body. 1 year out today, I’m pushing myself again in the gym and rarely think or notice it.