Saturday, July 01, 2006

Spontaneous Lung Collapse (Pneumothorax) - Part 3

I've been checking my stats and it's amazing how many people find my blog by searching for information about spontaneous pneumothorax - and they end up at Part 1 or Part 2 of my story. Since Part 2 ended on kind of a downer, I figured I should add an update to hopefully lift the spirits a bit of those going through an experience similar to mine - and maybe even answer some questions that I'm seeing asked in the search terms some of you are using to get here.

The short version is I'm feeling better. It's been an incredibly long, slow, laborious process, and I am by no means back to "normal" yet (whatever that even means anymore). I still feel pain, I still feel tightness in my chest, and I still occasionally feel the pressure that scares me into thinking another collapse is coming on. (That hasn't happened.) But it's all lessening over time. It's such a slow improvement that it can't be measured day by day or even week by week, but I'm finding myself doing things I never could have even a few months ago - including going to concerts and doing yard work. I'm basically back to living a normal life; my pain and discomfort is at a level now where I can usually ignore it.

I will say that I got to this point partly through a new prescription to painkillers - specifically Oxycontin, which is basically time-release morphine. In my search for relief, I finally found a good pulminologist who was actually willing to listen to my complaints and who recognized the debillitating nature of my pain. I was referred to a pain specialist, who prescribed the Oxycontin. It has definitely helped, although I don't take it as often as I could - and it's those days when I don't take it that make me realize that I probably truly am improving. It's not just the medication.

So the moral of the story is, while I still don't recommend the surgery I had for anyone on only their second pneumothorax, I no longer feel like my life has potentially been ruined forever. I do still feel like I made a mistake, and I would still say that the surgery I had is not worth 100 chest tubes. If you're on your second or third pneumo, don't do it unless you absolutely have to. And if you do have to do it, be aware that you may be out of commission for a long, long time. My pulminologist told me approximately 20% of patients have a similar experience to mine after a pleurectomy, even through VATS.

Now for some of the questions some of you seem to have:

Q: What does a pneumothorax feel like?

A: My two collapses were a little different. The first started out like a fluttering sensation, with building pressure inside the chest. The pain came later. By early the following morning, I could barely stand up from the pain, and the pressure inside was enormous. This ended up being misdiagnosed at the hospital, so I have the benefit of probably being one of the few people that can tell you what living with a pneumothorax feels like over a period of weeks. And honestly, the pain does lessen some - but it never goes away. You will notice decreased breathing capacity. Don't take the lessening of pain as a sign that you're getting better - it could just be that your body is getting used to its new configuration. This can actually make it harder to recover later.

My second collapse involved no fluttering or pressure - I was fine one night, woke up the next with the same pain on the left side of my chest. It feels like what you'd imagine a heart attack would feel like.

Smaller collapses might not hurt as much, I don't know. My first one was about a 40% collapse; second one was close to 100%.

Q: Will a pneumothorax resolve itself on its own?

A: Some do, but you need to see a doctor and have an x-ray. The doctor who caught my first told me there was a 50% chance I'd need a chest tube; it was borderline. I guess it depends on how big it is and where in the lung it is. I obviously ended up needing a chest tube.

Q: What causes spontaneous pneumothorax?

A: Nobody knows the root cause. They think smoking makes it more likely, but I don't smoke. They know it happens more often in people with my body type, which is tall and thin. There's no way to prevent it. There's no cure once you've had one. If you're susceptible to collapse, there's nothing you can do about it short of the surgery I had - which obviously has major downsides and risks.

Age is a factor - it's less common in people over 40. So it is possible to "grow out of it", although there's no guarantee you will.

Q: If one of my lungs collapses, will the other collapse at some point too?

A: It might, it might not. I'm dealing with this uncertainty now myself. Nobody can tell you for sure. Again, if you're susceptible to pneumothorax, then there's a good chance both lungs could collapse at some point (hopefully not at the same time, though it's possible). But some people do only have problems on one side or the other. My right side has never collapsed, only my left. I'm hoping the right side never does.

Q: How common is this, anyway?

A: It's more common than I think most people know. The statistic my doctor gave me was 1 in every 9,000 people. So it's not like catching a cold common, but it's not some sort of exotic rare disease either. It doesn't get nearly enough press given the size of the issue and the problems it can cause, if you ask me.

Well, that's it for now. If I have any more news, I'll post another update. In the meantime, feel free to ask me any questions you have, either in the comments here or by email.

38 comments:

  1. Anonymous12:46 PM

    Hi there Jeff,
    My husband had spontaneous pneumothorax about 10 years ago, whereby the doctors thought he was having an asthma attack. But when they did a chest X-ray on him, they had to immediately wheel him in for surgery.

    Yesterday, he complained of chest pains, more so to the left. He had a chest X-ray done today, which showed normal lungs. So that means it is not SP. But perhaps it is costochondritis? He is in much pain and having loads of difficulty sleeping. He has been given some painkillers.

    Any idea if we should worry that another SP may occur?
    It is scary, I must say.

    Thanks

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  2. I really don't know about that situation - I'm not a doctor, all I can do is relay what I know from my own situation and what my doctors have told me. Hopefully it is just costochondritis, because that's basically a benign condition (albeit surely annoying, and it can take a while to improve from what I hear).

    I don't know what kind of surgery your husband had but I had the worst kind and there is still a 5% chance of collapse in that same lung. So there's probably always a small chance no matter what you do. But his curent situation could be totally unrelated if his x-rays are fine - I don't know if there's really a case where a pneumothorax would not show up on an x-ray (maybe if it's extremely small, but then I wouldn't think the pain would be all that great).

    Well, I hope it turns out ok. If his pain doesn't improve within a week or two, you might want to go back and have some further tests done. That's what I did after I was initially misdiagnosed, but of course I didn't even have a chest x-ray originally, so I think it's less likely that your husband's doctors missed anything.

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  3. Anonymous4:21 PM

    hey jeff. i never had pneumothorax, thank god. but i had a case of spontaneous pneumomediasteinum (which is where an air pocket bursts and air is trapped between your lungs) pretty recently. there was pain and many similar symptoms to yours; i was sitting in class one day when i felt sensations of bubbles welling up in my throat near my collarbone. long story short, i was in the hospital for 3 days. no surgery was needed. they put me on oxygen to help the air to naturally absorb back into my body, and it did.

    anyway, i was wondering if you or anyone with mediasteinum have felt constant fatigue during recovery. i am sure that i have not fully recovered, and my chest pains return when i run around. so i though maybe the fatigue may be linked to the recovery. please, anyone who knows about this please tell me.

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  4. It's probably a little different recovering from a pneumothorax, because even if you only have a chest tube (and no surgery), you're still on all sorts of painkillers and your body's undergoing all sorts of trauma. So yeah, there's a lot of fatigue for a while after you get out of the hospital and you start to recover, but it doesn't feel unnatural. You kind of expect it.

    I don't know what sort of treatment you had, though, or if you're taking any medication. A lot of medications can also make you feel fatigued (I'm still on oxycontin for pain, and it makes me want to sleep 24 hours a day). What did your doctor say about it? You can always make a regular doctor's appointment and just have them check your oxygen level (they just attach a little monitor to your fingertip); that's all that really matters. If it's normal, then your fatigue is probably just being caused by something related to the recovery.

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  5. Anonymous1:50 PM

    Hey Jeff,
    I just thought I'd let you know what I'm going through. I am 17 years old and in the last year I have had 6 pnemo's (and I'm sure I've had more, very small ones that I didn't get checked out). Four were treated with chest tubes and I had a VATS plueradisas, but not with chemicals. They have yet to find any blebs. They seem to come in waves, four of them happened in less than one and a half months! Then I went 10 months without a collapse (but plenty of pain) and then 3 weeks ago I had two pneomo's in one week. So far, they have only happed to me durring the winter months (wisconsin) and if I have another I'm going to have surgery again. So I know how you feel, but I sure hope this doesn't keep happening until I'm 40.

    Good Luck with your health.

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  6. Anonymous9:58 PM

    for those doing research, here
    is another pneumothorax tale involving vats with bleb resection and abrasive pleurodesis (no chemical pleurodesis, no pleurectomy).

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  7. Anonymous11:01 AM

    A new method of pain relief...

    I recently had a Pleurectomy after my 5ht Pheumothorax (I'm a woman, in my 20's so it doesn't only happen to men). This was never done before as all my previous Pheumothoraxes just corrected themselves (they were all less than 10% deflated) with a few days bedrest. However this time, the lung was 60% deflated - which ment a chest drain. The doctors decided that as it had happened so many times, a Pleurectomy was necessary.

    The Pleurectomy involved peeling the outer layer of the lung off (the Pelural membrane), which forms a sticky layer and makes scar tissue to attach itself to the inside of the ribcage. The theory is that even if another bleb 'pops' the lung won't be able to collapse as it is attached to the ribcage.

    I was really scared about the pain, especially after all I had heared - let's face it having your lung peeled soulds like hell! I started to panic and was refered to a pain specialist (at St Georges hospital in London) who said that they had developed a new method for this type of surgery due to it being extremely painful where an epidural is given before surgery any will last for 24 hours, which is the worst time for pain. I really think it helped as I only pushed my morphing button about 25 times in the first 24 hours and was told that this was extremely low. I was still in quite a bit of pain, especially when I moved - as a result of the chest drain. But this was nothing compared to what I expected pain wise.

    This procedure was around for about a month when it was done on me (early May 2007) and had been performed on about 12 patients all with good results. When I went into surgery, there were 2 anethatests - one for the epidural and the other 'normal' anethatist. I was told by the anethatist that this procedure is not new to surgery but is used only for surgeries deemed highly painful such as hip replacement.

    Obviously there are risks with an epidural, however I feel it was worth it.

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  8. Anonymous1:31 AM

    Hi All, Firstly thanks for sharing your story Jeff, it's always good to read and relate to others who have suffered this terrible debilitating phenomena. I would like to add to your blog by posting my first hand experiences with spontaneous pneumorax.
    ~
    Looking back over the past seven or so years I realised that I have suffered lung collapses on numerous occasions and the follow on effects from these collapses where anxiety and depression which was all due to not knowing this was happening to me.

    A sudden pain in the back between the left shoulder blade and spine, almost like someone has just stabbed me with a knife! Prior to being diagnosed with spontaneous pneumorax, I just dismissed this pain as being spine/back related like maybe I have slipped a disk or torn a muscle. The thing that I found really frightening was when I lay on my left side or back my heart would make a clicking sound kind of like it was knocking on my chest wall and the feeling this gave me was one of pure terror!!!

    I was having a heart attack!!!! Or so I thought….alas off to the doctors I go and unfortunately in most instances I waited a couple of days to get an appointment and by the time I arrived the Doctors they could not find anything physically wrong with me. (in my case the collapse was very minor 10% and had reinflated itself by the time I was ready to see the doctor). I was also was referred to a heart specialist and as you could imagine they did all sorts of tests on me such as stress tests, ultra sounds, ecg’s ect……but nothing was found to be wrong with me other than being unfit.

    This happened on average of about once every year for the last six to seven years and as always it was the same initial pain followed this strange feeling in the chest and the knocking heart effect.
    The very last time this happened to me was in July 2005, I was working as a computer technician and was just speaking with a client when suddenly I feel this familiar pain, I carry on like nothing has happened, finish my work for the day and drive to day care where I need to pickup my 18 month old daughter.
    As I try to get out of the car the pain is agonising, so I call my wife and explain to her how I feel and try to talk her into finishing work early and pickup our daughter. Unfortunately she is very busy and cannot come to my aid so I endure the pain, take my daughter home and then try to manage as best I can until my wife gets home about 2 hours later.

    So here I am again lying on my right side because the sound of my heart thumping on my chest is really freaking me out while I wait for my wife to get home.
    My wife finally returns home and is very worried when ask to be taken to the hospital where they do an x-ray and finally diagnose me as having a spontaneous pneumorax.

    September 2005
    I decided to see a Lung specialist as the thought of this happening every 12 months is just inconceivable! During the consult I elected to have the surgery done immediately and hopefully end this once and for all, little did I know that the operation itself which I believe was very successful would take a considerable amount of time to get over and in hindsight I think if I had of known how long this would take and the pain involved I would have never elected to have it in the first place. That said it’s been two+ years now and I feel confident enough to say my worries are gone but the random pain and this feeling in my chest is still very much real. I hope with regular exercise and physio this will in time subside to the extent that I will feel as close to normal again.

    Nick

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  9. Anonymous12:09 PM

    Hi!
    I'm doing a school project on Pneumothorax's and this blog has really helped.

    Just wanted to say thanks!

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  10. I have a brother who has lung coolapes.
    He has long history with asthema and loves mountaing climbing and hiking.
    In 2004 winter he was diagnosed with costochondrotis, with excrutiating chest pain
    During 2005~2007 nothing happen , no abnormnal x-ray of chest. But he complained about having both
    heels of his feet keep peeling like onion.
    2008: hospitalized for spontaneous lung collapes, for symtom of x-ray with big hole in lung.
    He is ok now

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  11. i have had numerous spontanious pneumothoraces on both lungs over the past 15 years. I had VATs plurectomy on both lungs 9 years ago and all of a sudden in the past 8 months both lungs have started again so i am back at the beggining again trying to find something to help me be able to live the very active life that my 3 and 5 year old sons give me.

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  12. if anyone has any ideas of what can help me that would be great.

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  13. Anonymous1:10 AM

    I enjoyed reading this blog and everyone's comments so I felt obliged to contribute as well :) I just experienced my first spontaneous pneumothorax (SP) a little over a month ago. I am currently deployed to the Middle East in the military and have been here for almost three months now. Roughly a month ago, I was lifting weights in the gym. I was doing a leg workout and all was fine until I finished my third set of squats. I felt as if I had tweaked my back. There was some sharp pain in the middle of my back beside my right shoulder blade but the pain went all the way through to my chest. Also, I was short of breath and when I bent over, I could distinctly feel a sloshing and/or a fluttering in my chest. Now, I've always considered myself physically fit and have excelled in the physical training portion of the military, but I also was a smoker. I thought perhaps, I had knocked some phlegm loose in my lungs or something and blew off my symptoms. I think I convinced myself that the pain was from a tweaked back muscle and I cut my workout short and walked back to my room. It hurt incredibly and I was unable to stand up straight. Half-way to my room I had to stop for "a breather." In hindsight, I was pretty naive and foolish to blow off all these symptoms. The clinic on our base is about the same distance away from the gym as my room is. When I got to my room, I very gingerly laid down on my bed. It took awhile to lay back due to the pain and eventually I found the least uncomfortable position which was kinda propped up with pillows. I immediately passed out and slept for eight hours straight. When I woke up, the pain had improved slightly, so I thought I was getting better. I got dressed and worked an 8 hour shift behind a desk. After speaking with my wife (who is a registered nurse) over the phone and telling her about what had happened, she made me promise her that I would go to the clinic and get checked out. I only went begrudgingly because I had given her my word. When I told the medics my symptoms and after being checked out, their expressions gave me an inkling of the seriousness of my condition. lol A few minutes later, a doctor came in and gave me the lowdown on what he suspected was my problem and that is how I was introduced to the glories of a SP. He explained to me how there was no respiration sounds on my right side through the stethoscope and after an x-ray, we learned that my lung had collapsed 80%. As I waited to get ground evac'ed from the clinic to a nearby hospital, they performed chest-needle decompression with a syringe. That was kinda fun to watch and didn't hurt too bad. I was still all smiles at this point. lol After I arrived at the hospital ER, they threw me up on a table and the head docs came in and told me about the chest tube. The first doctor had done a wonderful job describing the procedure so I already knew what was in store for me and needless to say, I was a bit apprehensive by this time. Alas, I was told they would be administering me Ketamine and the last thing I remember before I got my chest tube was one of the medics telling me to pick what I wanted to dream about. I started coming to and vaguely remember them suturing the tube in place. After that I was wheeled up to my ICU room. The nurses were really sweet and were very comforting during my recovery stay there at the hospital. I had no friends or family there obviously, so they were the only ones I had to talk to. Anyways, the next day I was told they were going to have to redo the procedure because an x-ray revealed that the tube had gone between my chest lobes and had actually made the SP worse. Yippee! Again, I was prepped and drugged up for the procedure. This time, I quasi-started coming to while they were still getting the tube in place and I remember groaning from how much it hurt feeling the tube grating up alongside my chest wall. Thankfully, this tube was in the right place and after two days of being hooked up to suction and another couple of days on a water-seal, the chest tube was removed. That was another really cool experience. It didn't hurt too bad though. The doc just pulled it out super quick and then stitched me up, right there in my hospital room. After a few more days there, I finally caught a helicopter back to my base which is where I'm still at. I've got a few more months of this deployment and thankfully the duty here is very light. Probably moreso than if I were back at homestation. I stumbled across this blog trying to find answers on how long I should wait before I start working out again. I really don't want to go through that whole experience again and am willing to wait to exercise as long as is needed but on the otherhand, I don't wanna get unfit and out of shape as well. The doctors have not really been able to give me any sort of answer. They just tell me to give it some time. The only concrete limitation I was given by my surgeon was that I could not fly in an airplane for one month after the procedure. Reading about how so many people have had this reoccur is somewhat bothersome. It's also comforting, in an odd way, to see that other people have experienced the "numbness" on the side, and the "fluttering", etc... lol Well, I've not much else to add other than that I sincerely wish everyone else here who's going through this or who has gone through this, the best of health and luck!

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  14. Good morning Jeff. I do hope by now you are feeling better. One of our five adult children found your blog while searching for something about collapsed lungs. My husband, their father, had a collapsed lung when he was 47. Nov. 25th. of this year, that same lung collapsed again, he's now 74. He finally got home Dec. 2nd. First time they only did the chest tube, this time they did the procedure called TALC, where they blow the powdery substances into the chest tube to cover the lung. He said the pain was horrible when they did that and it really burned. Well believe it or not, I had to call 911 last evening, the 12th.and here they claim, it has collapsed once again. It is his left lung. It's always been the left lung. He was a smoker until 1996 when he had aortic aneurysm surgery. He quit the night before surgery and never smoked again. He also has blebs on both lungs and apparently one of them can blow out at anytime. Sort of like a weak spot in a balloon or a tire. So at 74, I have no idea what his options might be. The thoracic surgeon when we asked what happens if this happens again, said I don't know, but don't call me, which I thought was a rather flippant remark. Perhaps he was trying to be funny, but we found no humor in it.

    I wish the best for you, you are too young to have to worry about this happening all the time.
    My husband was doing nothing each time it happened. First time he got up from the chair after hearing Ronald Reagan give a speech. Second time he got up from his chair at the computer, he had been out of bed for about an hour. Last evening he was doing nothing but watching TV.

    Again good luck.

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  15. Anonymous7:30 PM

    Hi, my brother is 55 and on Sept 28 2008 experienced severe leg pain for about 14hours before being rushed to hospital with a collasped lung. when xrayed a grey spot was found on both lungs and thought to be TB at first, than lung cancer, than emphesemia. his lung has collasped 4 times and he has had TALC performed. He is still in hospital with no idea of what illness he has and is awaiting more test results. He is now on Morphine for the severe pain and becoming depressed. If anyone has any information that could help we would appreciate it very much. Desperate sister

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  16. Anonymous3:58 PM

    Im 6-4 210 pounds, and I had an SP about 9 months ago.I used to work out alot before this happened, and just wanted to know how long i should wait to start working out again. I went back to the gym last week and have been doing mainly cardio, but eventually im gonna want to start lifting weights again. i quit smoking ciggs, and cut down on the bong hits, but i feel like a sloth and really need to get back into shape! Knowing that a recurrance is likely really pisses me off. Oh... and to let people know about the flying risks... i flew 2 months after my SP. i had three flights, and a total of 8 hours flight time, and nothing happened thank god. doc just told not to fly right away(which i did)and not scuba dive, and dont smoke of course. so if anyone knows the recovery time for weight lifting .. lemme know.

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  17. Hello everyone, as most of you know, the root cause of spontaneous pneumothorax is a bit of a mystery, which is a frustrating reality we've all had to deal with. So, in an effort to try and find some cause or common correlation between all of us, I have decided to conduct some research which I was hoping you guys could help me with. I have reason to believe, based on some preliminary research and my own personal experience with SP and other's, that the formation of lung blebs/bullae may be tied to the use of the supplement CREATINE. If anybody has taken creatine at anytime prior to experiencing a collapse or being diagnosed with lung blebs/bullae or knows someone who has, please contact me at mproyea@hotmail.com and share your experience, or simply post it on this blog. I would greatly appreciate any information that you guys may deem helpful toward isolating a cause of this disease, whether it be related to creatine or not. I will keep you guys updated as my research progresses. Thank you and I wish the best of health to you all. My personal experience with SP is detailed below.

    My first pneumo was at age 15 when I was very physically active and engaged in a lot of weight training, which is probably what precipitated the rupturing of one of several blebs they subsequently discovered on my lungs. I had a chest tube which was unsuccessful and eventually a bullectomy (resectioning). I've since then had 2 more collapses (one on each lung) that required bullectomy and pleurodesis, the last one being in 2000. I've had additional collapses since 2000 but they never get past 5% or so due to the pleurodesis and just heal on their own. Anyway, I recently saw a lung specialist who revealed that many times blebs or bullae are discovered in people with connective tissue disorder (CTD) and it is thought that connective tissue disease is somehow related to the formation of blebs/bullae. I was tested for every possible connective tissue disorder and it all came back negative as was suspected since I didn't exhibit any of the outward physical symptoms associated with CTD. And then a couple months later, my friend revealed to me that he had been diagnosed with CTD when he was about 16 yrs. old, which affects his joints/ligaments/tendons and that he has always been convinced that it was a result of taking a sustained regiment of creatine for about a year leading up to the onset of his symptoms. This immediately caught my attention as I too had been on constant regiment of creatine for about a year immediately preceding my first pneumo. After doing a little research, I learned that creatine plays a major role in the development of connective tissue and so it seems possible, if not probable, that there is some correlation. And so thats my story and why I have decided to conduct this research. Again, i would greatly appreciate any and all info that you guys might provide regarding this issue.

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  18. Anonymous3:49 PM

    I was just reading everyones stories and trying to get some info on the subject because Iam scheduled to have surgery in a couple weeks.
    Im currently 10 weeks pregnant and 35 years old. I had my left lung collaps about 8 years ago and I had a chest tube while hospitalized for a couple of days and it wasn't too big of a deal no major pain. This time I woke up with chest pain and i knew my lung had collapsed agian. I had another chest tube put in but my lung didnt fill up so they put the tube in a differ location..still no improvement the third tube seemed to work better but not like it should. after 8 days in the hosp with my 4 month old and around 7 weeks preg. i was sent home with the tube in and was told i would have the surgery when i was 12 weeks along in my pregnancy because its safer. I have been in and out of the hosp and am now two weeks away from surgery I just had my chest tube removed after almost 4 weeks because my chest was hurting so bad not just around the site but breathing or lying down hurts bad. I feel a little more comfortable but the pain under my shoulder bone can be unbearable. I also have numbness when i touch my skin in certian areas from the tube. Iam very worried about having the surgery and the effects it could have on the baby. I was told that I have a bleb that is very large and it would be too risky to not have it done before the baby is born. The doc said that the fact that its not completely better really leaves me no choice and the chances of it happening agian are about 75% and it would be bad if it happend while i was in labor. Now that i have been home a few days and do some reading im not sure about the surgery at all. My doc said that if i wasnt preg and he did the surgery from the beginning i wouldnt be going through all of this so i was under the impression that it would be a fast recovery and easier then what im going through. Idk? any thoughts

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  19. Anonymous:

    I think being pregnant adds a whole different level than what my experience was, so I'm afraid of giving any advice that would contradict your doctors. I don't know if what they're saying about it being safer to do it now applies to you or the baby or both. It sounds like a tough situation but if they say you have no choice because of your pregnancy, then I wouldn't want to go against that.

    One thing I remember them telling me is to try not to cough when I had the tube in. I remember when I would walk around with the little portable water thing attached to my chest tube, whenever I coughed or held my breath and pushed, the water would bubble up. That's bad, because that's air escaping from the hole in the lung. That's probably why they don't want you to go through labor with blebs on your lung. It seems like a situation where you could easily pop one and then you'd have both a lot of pain and a lack of lung capacity during labor.

    I'd probably just do what they say in this case.. hope it all turns out ok! Not everybody has the same reaction as I did to the surgery, only a certain percentage do (according to my pulminologist).

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  20. Anonymous2:47 AM

    Thanks, yeah being pregnant deff makes it much harder to treat. I hate having all the x-rays even though im sheilded across my belly. and even though the pain meds they say i can have are safe for the baby and are a level 2 i havent taken anything but tylenol. They say surgery is safer after 12 weeks. Im willing to have the blebe removed because it is taking up most of my right lung and I keep having leaks. but im not sure about having the powder to make it stick to the wall..the last time i asked the doc about the procedure he said he has never operated on someone thats preg and he needed to do some more research and consult with my OB again concerning the powder causing inflamation and "weird things" so he wasnt sure but im glad they are working together. Iam tired of everything at this point..im sure you know what i mean the tube pain sucks. the first one i had internal stitches and it was in my side the second one was under my breast and they left the stitches in for almost 4 weeks before painfully pulling them out! then my last tube was pulled out and i think he had that one in a little too good, it was about 2 inches away from the last one under my breast but no stitches just a clear patch to cover the very large hole thats not going to heal as good as the others but im glad its out!
    The worst thing is the pain under my shoulder bone when i lay down i have about a min of the worst intense pain ever same thing if i laugh or cry or a deep breath, Idk why it still hurts but I feel like its going to take awhile.

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  21. Anonymous12:23 AM

    Never ending pain.

    I had no idea this many people have experienced an SP. Im a 25 year old male and about 17 months ago i had my first and only SP. (so far). I was lying on the floor with my girlfriend at my mom and dads in front of the fire fire place( on my belly ) When i went to get up i felt a stabbing pain between my shoulders and it came through to my chest. I quicky passed it off as a pinched nerve took an excedrine and went to bed. The next morning i could barley get up. The pain remained in my back, so i had my dad try to crack it back into place. (Wrong thing to do lol) After the grown man beat down i literly couldnt get off the floor. My dad helped me up and off to work i went. I noticed later in the day that it felt like somthing was loose in my chest , now im worried a little bit. So i called the ask a nurse hotline and they said it was a heart problem and to go to the ER. But it was late and i was tired so i went to bed thinking what was one more night gonna hurt. I normally sleep on my left side and was unable to breath if i did. The pain of it all was not good to say the least and im stubborn anyways and dont like the the ER or the Dr's office. But on day 4 i went to see my family Dr and after many test and an X-ray she discovered the SP witch was easy to see at 90% colapsed. She sent me to the ER were i was givin the chest tube within 20 minutes of being there. That sucked alot!! I was wide awake for that with just a shot of pain killer givin to me. And was there for 3 days. But like i said its been 17 months and i still cant lay on my left side or breath right if i do. I even get sharp pain streaks through my chest from time to time. Is this normal after an SP? Any insight would be great. Thanks and good luck to all yall goin through this.

    God Bless

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  22. Anonymous:

    I think what's "normal" after an SP depends on the person - I know my pulminologist told me that things are a lot worse for some people than others. After my first SP, I personally felt great once the lung was reinflated and I was sent home. I literally had not felt that good in years, and I'm convinced it was because the pressure was building up all that time before. (For several years previous, I had trouble breathing or doing things like leaning down - it felt like my chest was going to explode when I did.)

    But then, obviously as I said in my series of posts, my second SP was totally different. It was literally just this year - like 3 years after my surgery - that I could finally lay on my left side again. And I *still* have pain and tightness on that side. Obviously what I had done was more traumatic than just a chest tube, but I think a lot of it just depends on what nerves they hit and what they cut through when they do all this stuff, and that can be true with a chest tube too.

    So I think it's *probably* normal what you have, although you can always talk to a pulminologist or a pain specialist. (A pain specialist really helped me after my surgery.)

    ReplyDelete
  23. Stuart Lawrence, UK7:03 AM

    I recently had an SP for the first time. I was at work, in a really boring meeting. I felt a sudden, sharp pain high up on the right side of my chest. I excused myself from the meeting and made my way back to my desk. I sat there for a minute, thinking 'trapped nerve' 'trapped wind (lol)' and all sorts of things, not once did I consider a collapsed lung. I got a lift to the hospital and told them what had happened. After ecg & xray they said that a small part of my lung had collapsed but that I could go home. But i was to come back immediatley if my symptoms changed or got worse. So, off I went. I woke the next day feeling very wheezy and really uncomfortable. I put up with it for a few hours but then spoke to my wife and we agreed that a return to the hospital was in order. Sure enough, after a swift xray the docs there confirmed that my lung had collapsed a lot more, I don't know exactly how much but they were very keen to admit me. So, In went a needle into my chest, an Aspiration. Very unpleasant, and annoying because it didn't work! So, it was chest drain time. As previous posts can confirm, not a pleasant thing to have inside you. 5 days later, after much pain and discomfort I was discharged under strict orders (my doc was the sort you didn't mess with!!!) to take it easy and relax. So, I did that. We went to visit some friends in Devon thinking that the sea air would help, I called it recuperating Victorian Style. All was going well until I started to feel very flu-like. I called the local doctor,went through a checklist of questions. He put me straight on Tamiflu as a suspected Swine Flu case! What next???? I was confined to the house which was torture! That was all about 10 days ago now. I'm home and feeling much better. The flu like symptoms have passed, mostly. But I'm still very tired and achey. Also, I'm getting some pains in my chest. Mostly dull, short pains in the centre of my chest. But occasionally, I get a feeling very similar to when the SP first happened. Which is a bit of a worry. Does it follow that I'm nore likely to have another collapse now that it's happened once?

    I'm really happy I found this blog. I wish you all well for the future.

    ReplyDelete
  24. Anonymous3:44 PM

    Wow, how interesting to know we aren't alone.
    I am a 28 year old female. Healthy and active generally but have just had my third pneumothorax last month. My first was a left sided in 2003, second a right sided in 2005, and after a physical attack by a student (I'm a teacher) another right sided last month. After my second, I had the VATS to 'prevent it' from reoccuring but it did almost 5 years later. The scariest part for me is that I woke up this morning with the 'pinched nerve' sensation in my back under my shoulder blades that I have had each other time. I always brush it off as something muscular only to find out days or weeks later that I have a major collapse. I have an infant son at home who needs me so I am reluctant to go back to emerg but think I best go and hopefully rule a repeat pneumo out.
    Does anyone else have a family history of pneumo? As a young female who doesn't smoke and never has, I am often reminded of how rare this is but my father had each lung collapse when he was in his early 20s (he passes away at 42). Any thoughts?
    Thanks for this blog. It's nice to know we're not alone in this.

    ReplyDelete
  25. Anonymous5:26 PM

    lee, just wanted to a thank you for sharing these informations. i my self suffered spontaneous pneumothorax i was 17 at the time, it was a scary moment sincei was on holiday by my self visiting my relatives, i my self is a healthy person, i go running, do martial ats and gym, yet ive always been thin, how ever this has never stopped me from pursuing things that i want to do,as a young teenage. one morning after my couzins wedding, i woke up went to the living room then a felt a shocking pain in my left chest. like holes that are so painfull, the more breathe the more paiful is it. went to hospital for an x ray and found out i had a collapsed lung. they the reffered me to another hospital who specialized in lungs. and told me i had a spontanous pneumothorax judging by the x ray. and only to find out i had to go sugery i it my left lung wouldnt inflate in 8 hours. later on that evening i underwent i dont know what you call it, where they had to insert a tube and leave it there..to this day i will never forget that pain they gave me local annesthetic. pain was unberable. this was located in jordan at that time. stayed in hospital for 4 days. and they said i couldnt goback home for a month due to pressuare if i was in the plane. now that got bk to londo. few months later i felt sharp pains. in my left upper shoulder just where your chest is went doc they said t was muscle problem but i was so certain it was the thorax again ecouse the doc previous one said thers a30 percent reaccurance. went a&e and foundout i had a collapsed lung again but not seriuos. so they used a needle for it. later on i was booked for an appointment regarding surgery to close the lung. and 3 weeks later had a surgery to close he gap, insert a chemical between it. thankyou for who ever shared their in thi blog, at that time i was so scared and ive never shared this info before. advise to those whos going through the same situation is just dont give up. at that time you may feel lost but trust me their will be better days. lee and if you wanna share info heres my email. lei.lei@live.co.uk good luck

    ReplyDelete
  26. Anonymous10:17 PM

    I was skimming this site because I have now had my left side collapse three times and my right once. I was looking for pinched nerve syptoms, I work out a lot and have a very athletic body. I always do some sort of damage to my back at some point of working out. I would describe my 50% collapse to something of a heart attack, I felt like water was running down my back when I would sit up and an air bubble would rise to the top inside my lung. My second time was not as bad because I caught what it was right away and it was only three weeks after I recovered from the first. It was a year later when my right lung decided to go. (Chest tubes all three times) A year ago I had a small collapse that was only 5% but I knew what it was right away once again. I was put on oxygen for a little bit in the ER till Xray showed it was small.. I was given pain killers and sent home.. after about a week it did heal on its own and have not felt signs of it since. Right now I am debating if it is pinched nerve or small collapse again since it is on my left side. Pain comes and goes, I can take Tylenol and the pain goes away. I can sleep on it and I will be okay for a few hours as long as I do not get to active. I can run up and down stairs without shortness of breathe nor do I have any shortness in breathe. When the pain is here it is so painful that I can't do anything but just lay down and relax and sleep. Just wanted feedback from others with same issues. What would you guys say? trying to not go to ER or get Xrays since it is so close to holidays, its not a constant pain. As far as the history goes for my spontaneous pneumothorax first one accured when I was 17 I am now 21 Male. I am thin tall and athletic. Thought I would share my story as well as ask questions with others with this experience.

    ReplyDelete
  27. Anonymous11:58 AM

    im a 28yr old female and had a Tension Pneumothorax a week ago. I woke up wiv pain in my back between my right shoulder blade and spine which went right though to my chest bone and diaphram, it felt like someone was pushin a breeze block into my ribcage and i could only breathe if i was layin on my left side wiv my right arm proped up and even then i had to pant like when your in labour. my partner immediately called 999 and got me an ambulance, the paramedics found diminished breath sounds on my right side and took me strait to hospital, on arrival they done a chest x-ray n found i had a Tension Pneumothorax and my lung had completely collapsed which had moved my heart completely over to the left side of my chest and was begining to cut off my blood supply (the dr said i only had 15mins to live) so the dr immediately had to push a canular needle though my chest to release the air so i could breathe again, after havin morphine a consultant came to see me who then fitted me with a chest drain while i was still in A&E. i was then transfered to a close obs respitory ward where i stayed for two days, my chest drain was removed 24 hours after it stopped bubblin and i had an x-ray 5 hours later to check my lung had reinflated properly, then i was sent home wiv pain killers and antibiotics. i am still unable to look after my two children myself as i am still gettin dizzy, light headed, nausia and breathless when i move about, im also still gettin what feels like pressure in my diaphram and stabbin pains in my shoulders and chest and back. can some1 please tell me if this is normal and how long its likely to last??? im normally very fit and active and when this happened i quit smoking. i really just want to get back to normal and get back to work, thank you

    ReplyDelete
  28. MomfromBC1:38 AM

    Hi Jeff...just found this blog after 3.5 years of watching my son...now 19 have over 20 collapses...he's had 4 of the pleurectomies and is now having another one...although under the 15% side so I am hopeful I'll reabsorb...but am worried it will go down like before. He now has pain everyday and this stabbing back pain to go with this...he's been trying other forms of care from homeopath to kinesiology to help open up his lungs and breathe more deeply...I'm a tired out mom of trying to find anything that may help...and now notice that your blog is quite old so I'm thinking you're doing well by now...I hope. There's just not much out there for preventative measures and unfortunately he's tall and skinny and although he eats well he just can't seem to put the weight on...I feel bad for him as I can see how !such pain he lives with yet I can't help him. I am so hoping the more people we can connect with that maybe others have found some success with preventing collapses...if so please share.
    Thank you!

    ReplyDelete
  29. Hi there,


    I haven't had another collapse, although I still have weird muscle problems on that side from the surgery. And I still have blebs according to my pulminologist, so I *could* have another collapse. She told me not to worry about it, though. (I think they tell you this because there's nothing you can do about it beforehand anyway.)


    I hear stories like yours sometimes about people that seem to have it a lot worse than me, though. I only had 2 pneumos and then the surgery that was really the worst part of the whole thing in my case. I wish there was something I could say to help your son, but at least it has seemed to calm down as I've gotten older. I've also put on a few pounds (not many, but a few), which might have helped, though I'm not sure. But I have gotten to a point where I don't think about it anymore in my daily life, so hopefully your son can get there as well as he gets older.

    ReplyDelete
  30. MomfromBC10:09 PM

    Thanks Jeff. Funny as I've been trying to get him to put some weight on for years but he has such a high metabolism that it doesn't help. I'm glad for you that you're at the stage you are and able to move forward with your life. I'm hoping that my boy will get there as well...soon.
    Take care

    ReplyDelete
  31. Damian10:39 AM

    Hi my names Damian I'm 26 I have had both my left and right lung collapse 3 years apart when I was young I didn't know any better and used to hang over the neighbours yard with my mouth on the asbestos fence I think this played a big part I haven't had a collapse in 3 years but I believe I'm due for one my health has deteriorated a lot lately and was wondering if it's due to lung cancer

    ReplyDelete
  32. georgeblanchard12:36 AM

    Hi
    im currently just out of surgery after my second collapsed lung and feeling a tightness in my chest with small amout of pain. Im in constant fear that i will stop breathing during sleep. Do you ever have a similar feeling if so did it ever go away.
    I am scared to the point ofcrying that i will never be 100 percent or even close again. Im only 33 this is crazy i feel like i shouldnt have to worry about this i have noone to talk to or ask about this that knows firsthand please give me some hope its been a month when did you start really getting some feeling even no matter how small of normalcy.
    George Blanchard

    ReplyDelete
  33. I've just recently had an SP. It was a large complete collapse on my left side. Didn't help that it took me 2 weeks to see a doctor (typical male).
    I'm 32yo, male, fit, occasional social smoker, 5'11.
    Spent 2wks in hospital.
    1st week with 1 small tube hoping it would heal itself.
    2nd week I had pleurodesis and recovery with 2 large tubes on suction and IV with plenty of painkillers.
    I remember reading your post during the first week and it did fill me with a lot of dread. I'd wake up each morning praying the water in the chest tube wouldn't be bubbling so wouldn't need surgery. But it just kept bubbling away courtesy of a persistent hole on my left lung.
    I wish I never read it because for me, surgery wasn't a choice.
    Thankfully, my experience hasn't been as bad (although it still is early days). Yes, the recovery is painful but you need to be one step ahead of the pain by taking plenty of meds. Oxycontin (mentioned above) was one of them.
    I'm now off meds but still feel pain at the top of my breath on the affected side. Also the skin around the nipple is very sensitive.
    Ultimately you need to heed the advice of the medical experts. If they recommend surgery, then don't hesitate.

    ReplyDelete
  34. Everybody's experience will be slightly different. I'm glad you're recovering well.


    I went through three years of absolute hell before painkillers finally allowed me to lead a more normal life. Today, I still have tightness and the occasional flareup on my left side due to overexertion (ie. "moving around at all") that has occasionally led to additional emergency room visits. These often feel exactly like new pneumothoraces. For me, the surgery was not even close to being worth it, and I still say that more than 10 years on. It has completely and permanently altered my life in a negative way.


    Doctors can only do what they're trained to do, but humans are all different, science is not infallible (and I am both a fan of science and married to a nurse!) and not everyone will react favorably to the indicated treatment for a given condition. Ultimately everyone needs to decide for themselves if it's worth it for them. I am glad it worked out for you - I wish my experience was as good as yours.

    ReplyDelete
  35. Denise Nichols-Telford1:17 AM

    Hi Jeff,
    First, I want to say thank you for having written this blog. I am also glad to read that 10 years later you are well and still monitoring this blog. My son is 14 and a year around basketball player (relatively tall and skinny). His first spontaneous pneumothorax occured Feb 8. They inserted a thoracic vent at the ER and sent him home that same night. (Freaked us out) His lung was completely collapsed and had actually pushed his heart over slightly but re-inflated immediately when they inserted the vent. He told me that the placement of that vent hurt worse than anything he has ever felt, even his post-op pain wasn't as bad as that. With the vent in place he still showed signs of air in his plural cavity for almost two weeks but it finally resolved and the vent was removed. After a few weeks of healing he was allowed back on the court. On April 8 he was sitting in biology class when he felt a pain and then a rush of air come out. He walked to the school office and called me and just said, "Mom, it collapsed again". This time he had the surgery where they took the top of his lung, stapled it shut and he was in the hospital for 7 days with a chest tube. He was in so much pain but mainly from his muscles in his back cramping from lack of use. He was finally released but went home with the Heimlich Valve. This was in for another week before it was removed. He went back to school on 4/27. Not allowed to even dribble a ball for two weeks and will be allowed normal physical activity on 5/25. His coach said nope to competitive summer ball and said he will work with Kai this summer on conditioning but no hard core playing. So with all of that said, my son walks in tonight and tells me that the other side of his chest is bothering him but he is convinced it is gas...So I started looking for something besides Web MD and various other sites for some answers or some real information from people who have actually been through this. I probably will sit and watch him sleep tonight praying that it IS gas. We are in the middle of all of this still so pray he heals, gets past this and he grows out of it. And that his other lung doesn't go...
    Thank you for giving me a place to put this.

    ReplyDelete
  36. monal2:45 AM

    Hi i had SP in 2007 first attack then starting of 2008 2ND ATTACK third happen in 2010 finally went for vats and even biopsy . Since then i have had pain every now and then even 15 days back while playing sport i dashed into one of my frnd my head his stomach since then pain is very high even problem in breathin my back was hurt as well as got concussion now everthing else is gone except for chest pain i take my chest x rays every 4-5 months as i smoke last xray was in jan 15 it was fine. But this time i m really scared.plz help

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  37. Emma Anderson10:55 AM

    Hello, I am just looking to let people know that I have written a small blog which documents my recovery from a pleurectomy to treat reoccurring spontaneous pneumothorax. I did it because like many people I looked for answers online before my procedure and was unable to find much. If any one on here would like to give it a read you can find it at theblebbingtruth.blogspot.co.uk I hope it helps :)

    ReplyDelete
  38. Hello everyone...I am a Back Doctor In Las Vegas. A low back pain case came to me; the patient was in deep pain past few years. After going through his medical history I suggested the patient to do some kind of yoga daily. After few months of regular yoga, the patient reported improvement in medical condition.
    What I want to focus is that, you always need not to go for vast treatments or surgery, Better to find the root cause then move for the treatment.

    ReplyDelete

About This Blog

This is increasingly not a blog about Alphabet City, New York. I used to live in the East Village and work on Avenue B, but I no longer do. Why don't I change the name if I'm writing about Japan and video games and guitars? Because New Yorkers are well-rounded people with varied interests, and mine have gone increasingly off the rails over the years. And I don't feel like changing the name. I do still write about New York City sometimes.

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I'm married. I like to travel. I have no kids. I have a house... that I'm bad at maintaining. I used to collect classic video games. I own a lot of musical equipment that far outstrips my ability to use it. When I was younger, I was in a band. I like gadgets, and I'm an Android guy. Someday, I would like to live on a different planet.

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