Submit Response is a weblog by Jack Mottram, a Spontaneous Pneumothorax Patient Network
This is one of the more heavily-commented posts to this site. It’s about the last time my left lung collapsed, on the eve of my 25th birthday.
Thanks to Google and my bad habit of thinking that spontæneous ought really to have that ligature in it, regardless of the late Latin root, has become a place for people to exchange stories about their own spontaneous pnemothoraxes, apical blebs, pleurodesis operations and other fun stuff like that.
It’s quite a sad thread, really:
I live in fear on a daily basis that my lungs could collapse again… I have gone into a deep depression over this and do not know where to go from here. — Todd
I have no insurance. Has anyone had any problems with just ignoring an sp? I know I shouldn’t, but I seriously can’t afford another hospital visit. — Carrie
It is painful, devastating, scary. I wish someone could find a cure for this, because I am tired of hurting. — Anna
Today, happily, reader Marianne pointed to the Spontaneous Pneumothorax Patient Network, a repository of up-to-date information on the condition, with forums providing support for sufferers.
Fingers, toes, and any other crossable parts crossed, I won’t suffer another collapsed lung - it sucks, literally - but if you have, or are worried about someone who has, you could do worse than visit the SPPN.
Hello everyone. I also had a collapse lung, and had the chest tubes in and 2 surgeries. Also had nerve blockages 4 time and a spinal cord stimulation for a few days, then had a nerve abrasion. I went through all of that and nothing worked. So I guess we are all in the same boat! I see.
Posted by Sandy at 2pm on 14.09.05
I’m a 31 yr old female and I’ve just had my second spontaneous pneumothorax. I’ve just signed up for surgery (carrying out bleb stapling and abrasion pleurodesis), but my surgeon says that VATS has a higher recurrence risk than thoracotomy (bigger incision) He’d therefore prefer to do the latter , but wants instead of using a rib spreader, (which he thinks can cause cracks and therefore rib pain) to take out a little section of rib and not put it back. I have to say this worries me a lot, because I have read a lot of postings about ongoing pain after surgery. Has any-one else had the more open procedure and if so did they lose a bit of rib?I wonder if I should get a second opinion?
Vicky
Posted by Vicky Jones at 1pm on 24.02.06
I am a 22year old male. I had 3 collapses on my left side within 2 years, my doctor refered me to a consultant who monitored me. It was only after a collapse on my right side occured that i was refered for surgery. I had what is called a pluerectomy, which means using keyhole surgery the abseses on the top of the lung(which kept rupturing and letting the air escape) removed and also the removal of my lung lining so that my lungs stick to the chest wall and therefore only have a 2%chance of collapsing again. It means a hospital stay of 7-10days and you recieve a epiduarl for pain relief.
nearly 3 years on i have had no collapses and apart from the odd bit of discomfort live a normal life.
Posted by Gary at 8pm on 20.03.06
I have had a pneumothorax with surgery, a rib spreader was used, the pain is bloody awfull now. i wish it was neverdone. the surgeon takes no blame for this, saying it was just part of the proceedure. i am currently undergoing pain management, having had 2 sessions of more painfull injections with no let up.
I would like to hear from anyone with a complaint, with the intention of complaining to the ombusman.
all this and still only 42, long road ahead.
Posted by lynn Williams at 10pm on 30.06.06
Hi everyone I was a Sp sufferer 2 years ago yesterday that was my first and only time but I remember it like yesterday, I just wanted to say to all those out there who have had one off sp thought of it dose get better over time I still every few days think why it happened as there is no real known cause for it but I dont worry as much know, I do truly sympathise with you all as is worst thing to go through most of you are probably thinking I was lucky just to have the one time and not to have further surgery but was shock for me at 22. Good luck and get well to all
Posted by Jenny at 11pm on 09.05.07
Hi everyone. I am an 18-year-old male i had an sp 2 months ago during spring break. it was awful and no one in my family or neighbours have ever heard of this case and all thought i was exagerating untill the air began to expand even more and more. then i got to the hospital and spend 5 days there. i just wanna tell u to take it easy on ursleves I am 18, and there’s still a big risk that sp will occur to me again still am not obsessed with the thought of it comin back and no one should be because it would ruin ur lives. just follow the doctors orders. stop smoking, out on some weight for protection. And enjoy ur lives :D and for those who had to undergo surgery I just hope that ur all ok now.
Posted by Fouad at 6am on 29.05.07
I’m 22 and i had my first spontaneous pneumothorax at the end of October. I went down to pick up my laundry and suddenly i had this sharp pain in my chest. Naturally i didn’t know what happened so i try to shrug off the pain like nothing happened. But the next day the pain was still there, because when i walked and breathe it felt like my heart was hurting, so on the third day i went to the doctor and they said it was “Chest Pain Wall” however, on the fourth day they called me and told me that another doctor saw my X-Rays and said my lung had collapsed. So i went the this hospital a pulmonologist said he was at to get me to recovery, when i went the ER sent me back home not contacting my doctor and said i had “Chest Pain Wall.” Then the next day the pulmonologist’s office called me and said i never went (But I did) and so sent me back for direct admitting.
I didn’t know what was going on, they gave me oxygen for the night and then a chest tube the next day. I was in the hospital for 3 days and sent home that i was fine. But for a couple of weeks i lived in this panic attack mode wondering if it happened again, but it was just scaring from the chest tube. I still worry about it and I think i get these fake symptoms cause I think about it so much, but you know cause like everyone says you can feel your lung hit the chest wall. I was a smoker but now i quit it all. The things that could happen later in life out weight the pleasure. I just hope it doesn’t happen again.
Does anyone know if you could gain weight and this helps it not to occur again or some tips of healing doctors have said to you? Mine said that quiting smoking decreases it a lot but i need more advice cause i try to learn more about it online and there is not to much. I would like any advice that anyone can give me. that their doctor gave them or how you live now. Thanks
There is no knowledge that is not power
lilman748@hotmail.com
Posted by Luis Salinas at 10pm on 27.11.07
i thought it was just me !.
had two sp’s when i was 28, it was a very scary time. thought i was having a heart attack. had drains put in then was sent to the london chest hosp where i had a pluerectomy op. was told it was a long recovery, i was off work for a year, that was over 6 years ago and i still have loads of pain. surgeon and dr just say that its nerve damage etc. part of my chest and back are still numb now. thank god i found this sight. am in pain now, thats why i looked on line for some help. please contact me for chat etc. nicky1972@blueyonder.co.uk
Posted by nick at 8pm on 12.12.07
I had an SP in April 07, it hurt like hell and the doctors at the hospital inserted a drain but every day the drain twisted and I had in total 4 drains in 5 days inserted into my left side and still the lung reamained totally collapsed, I was then carted of to London to undergo VATS surgery and had a further 2 drains inserted. After 8 weeks of being in hospital I was back at work but in September 07 I started suffering with chronic chest pain and have not been back since, everyday the pain is there and I even started to suffer with shortness in breath. My GP has since diagnosed me with Asthma and has said that the pain is due to the operation and can not tell me when or if it will go. Then in May 08 I had yet another SP but this time in my right side, luckily this was resolved within 5 days and no operation was needed but i’ve been told that the chances of a re-occurence is really high and if this happens then I will have to have the VATS procedure again ( THIS I DONT WANT ). I’ve asked Doctors what is causing the SP’s and have been told it’s because i’m tall n skinny. I just want to know if the pain will go and whether I can return to work but lately i’m worried about the re-lapse.
Posted by Kevin at 12pm on 28.06.08
hi all, just popped by couple of sites since i been thinking, n kinda worrying, im a spontanious pmueno thrax patient, i was on holiday when it first occure, i was 16, 3 days after my birthday, i had a tube suction fo 4 days but 6 days in total in the hospital, i was with my couzins which mean tthat my familty was bk in uk, n we could only get intouch through phone, it was a hard tym, since auguy 2007 till about december ive been feeling ok, then i had a stange feeling of noices when i breathe, n my top left chest felt pain every time i take full breathes, i went hospital, without my parents becouse i didnt want them to worry, then they said you had a little air, outside the lungs n should take couple of days to decrease, then couple weeks later, i felt the same pain , n this tym it felt like a grape full og bubbles if that make sence under my lungs, left ribs, n every tym i jumped or run , i feel something moving, wen tto hosptal this tym with my family since ive been worrying sick, doctor said, tha tim paranoid, n i know my self, i kept tellin ghim tha ti have a reoccourance, after an x ray, he said that i do have it and should get it de imflated by a needle, so their i go with a needle stuk on my left chest so they can take the air out, i hope you all can understand me since im finding it hard to actually explain all, anyways, had a appointment with a cardio surgeon, n made a plan that the best way on forward is a surgery, so i took it, with a smile on my face since august 2007 till 2008 jan ive had no excercise n its killing me to see people running n doign everything they want n in such a young age, things like this shouldnt happen, alwas been slim, tall, but never thought such thing could happen to me, had the surgery n again i had a tube in my chest, 3 days in hospital, had a LEFT VAT APICAL BULLECTOMY AND TALC PLEURODESIS, i was in suction for 48 hours n my drains were removed on 08/01/08 been couple of months later on, n now its july, n sadly im feeling as if im having an occurance since after doing gym, it felt as if the feelign when after my operation was, couldnt able to move my left ribs or inflate it with big deep breaths couse my left lungs wasnt used to the powder they put in my left lungs, its really annoying, this pnumo thorax, becosue it stops you from all the things your used to, n knowing theirs somehthing wrong with you doesnt help at all, so all for now, i dont know what shall happen but im hoping to get on with my normal life since im only 16, n i should be enjoying my self, n not having naother operation, it hurts everry tym i loook at the scars since it reminds me of the pain in the hospital, n not a day i dnt stop, n take this breathe of fresh air n jsut smile knowing that im all blessed, im hoping to call my surgeon n see whats wrong, for all the patients who’s looking for information online PLEASE DNT LISTEN becouse, most of the topics is about the things that went bad, out of 20 pnumo thorax patients who had surgery only 1 will have a reoocurance n its est to go hospital n talk to a phuno thorax surgeoun or any one who knows complete info of this sickness,
all the best people n
try not to think about it,
theirs alto of ways of treating this,
only of a matter of tym so be patient n ty not to wait,
lee.
Posted by lee at 2am on 19.07.08
i am 20 years old and i have had a spontaneous pnuemothorax about 6 weeks ago and im still getting chest and back pain and im constantly scared it is going to happen again, i am going back to hospital for a CT scan as they think i have enphasemia at the top of my lung and may need to patch me up.
the firt time i had the chest pain i was 16 and i thought it was a heartatack, my mum told me i as having a pannick attack so i did’t go to the doctors, i did go to my doctors the 2nd time it happened and because they didn’t know what it was they told me it was a trapped nerve and i started seeing an osteopath who was cracking my back and chest to try and releive the pain. i have suffered with chest and back pains since i was 16 and now i know what it is unfotunatly i am still aware that each time it gets worse and more life threatening and i am scared that it will happen to both lungs. i dont know if its normal to keep getting the pains but i would like to know so im not scared. i do know how horrible it is to be in pain though and what its like not to be able to do things im used to because i dont want to hurt myself! best of luck to those of you who are still battling to get sorted x
Posted by Kirsty Kerridge at 2pm on 05.12.08
Hello everyone, i am 15 yrs young, and i had a Spontaneous Pneumothorax on Nov, 26, yes, right B4 ThanksGiving, i had a chest tube for 1 week till i got the surgery (clamping the lung) it was a very hard time 4 me, after spending 2 weeks in the hospital i got out, and now 2 weeks later my cuts are almost healed, i have 4 of them, and one of them has a tiny piece of line sticking out, what should i do, has anyone had this problem, the stiches were taken out a week ago.
Posted by Lucas Kenzo at 5am on 25.12.08
Hello all I am 20 years old and have had SP 3 times 2 on the Right once on the left. First the left went to hospital after a few days of ignoring the pain and still smoking regularly, I only went into the hospital because I could not breath and I though I was dying. I had basically went into shock, it was terrible. they drained it with chest tube and I went home in about a week. One week later I had another SP this time on my right side same deal chest tube drainage. I then went for about 4 months with no problems, then that same familiar excruciating pain. Into the hospital and this time Chest tube and VATS surgery, where they adhered my lung to the pleura with talc. It was a long painful recovery. I now have numb spots on my chest and back, and my back cracks constantly around my shoulder blade. It is as if my back gets extremely stiff and it feels sooo relieving to crack it, I suspect this is not healthy tho because just recently I have begun to notice pain in my back and my armpit. I just pray there is no reoccurrance on the right side. That being said I am going to the lung specialist today for some breathing tests and to inquire about my left lung, which is now giving me problems. I am so sick of this, and for all of you other people on this site I feel your pain. I wish you the best of luck, and pray that you do not have any reoccurring problems. I feel like theses SP are controlling my life and I have completely lost all control, I am no longer able to live my life the way I want to. There is nothing I want more than to be able to visit my friends in Colorado, but I am unable to because I live in fear every day that it will happen again at the worst possible time. The anxiety I experience is unbearable, I just don’t know what to do. Once again best of luck to you all…
Posted by Matt Stevens at 11am on 09.03.09
I just had my second SP last week, first time was on the right, second time was on the left. both times had the surgery where they remove the “bleb” and make it so your lung sticks to your chest wall. i dont think people realize how much pain and suffering we go thru with these. The chest tube insertion alone is heinously painful and the surgery recovering is pretty bad too.
I quit smoking after 7 years, and I was told I have a less than 2% chance of this ever happening again. but yes its scary and any time you get any pain there you always think…could it be. Its odd how many people dont know about this condition and how rude people can be about it, they blow it off like its nothing, but like many of you have said, its agonizing and it really can take a hold on your life and make you worry all the time
Posted by Shane at 11am on 20.03.09
also, i would reccommend if presented with this…you get the surgery from what ive been told if you dont, its almost guaranteed that it will happen again
Posted by Shane at 11am on 20.03.09
Just want to say to all you sp sufferers I know the worry that you feel. I used to worry all time after my first SP I was 22 at time and a smoker and about 6 kilos lighter than what I am now, Id like to say be positive I know can be hard but after my incident in hospital for 5 days with a tube, I looked at things different and changed my lifestyle I started excersing and may not be the person I am now if didnt happen, its 4 years ago now and yes i still remember it very clear but I dont feel every single pain in my chest anymore and think its going happen again like i used too, I still think of it occasionaly but no where near as much and dont feel the worry I used to. I am proof that dose not always happen more than once well it hasnt yet and I am healthy and strong so take care of yourselves and you will over time worry less and less. be brave. Take Care.
Posted by Jenny at 6am on 29.05.09
Hi all i had my first sponÃÂtaÃÂneous pnemothÃÂoÃÂrax when i was 20, spent around a month in hospital everything worked out well so carried on with life but with constant pain in my chest.
My next double sponÃÂtaÃÂneous pnemothÃÂoÃÂraxes happend when i was 22, just sat at home then bang pains on both sides of my chest, not good, passed out quite quickly, woke up in hospital and then spend 5 months moving to 3 differnt hospitals, (Mansfield General then Kings Mill Hospital and finally City Hospital in Nottingham)
Ended up having a fair bit of my left lung removed and the right lung glued to the side of my chest…..
But im now 39 (still with lots of chest pain) and living a pretty much normal life, so PLEASE do not worry too much and just enjoy your lives to the full……
Any one wishing to chat about there sponÃÂtaÃÂneous pnemothÃÂoÃÂraxes worries then email me im living proof there is life after this weird illness
thx
Paul
Posted by Paul Dickinson at 8pm on 12.06.09
My email is psdicko1416@sky.com, forgot to add that bit lol
Posted by Paul Dickinson at 8pm on 12.06.09
hey evry1, i’m an 18 yr old 5’10” tall lean college going guy… and am still recovering from a spontaneous pneumothorax of the left side… my lung collapsed not more than 30% and doctors just kept me under observation as the condition was recovering by itself… but i’m still vry anxious whether it may recur or not…i am a non- smoker & have got healthy habits; i’m an academically bright student and have got high ambitions, but am afraid whether the condition may have any effect on my life…pls advise….
Posted by illaiegg at 4pm on 15.11.10
I’m a 17 year old female and was 16 when i had a spontaneous pneumothorax in my right lung. However i called NHS direct for medical advice who told me it will pass and there is no need to go to hospital, therefore i did not go to the doctors until 4 days after the lung first collapsed, my surgeon told me he rarely sees such a bad collapse and that had my lung moved over slightly more i could easily have died :/
I had 2 operations not long after one another, the first to reinflate the lung and the 2nd was a pleurectomy and bullectomy. Both operations were incredibly painful, the first i was awake for and found incredibly painful although i didn’t tell the doctor that the anesthetic had not worked properly. The pain and time i spent in hospital were awful and i missed a lot of college work because of it. I am recently experiencing twinges in my left lung and am quite worried this lung will collapse at some point in my life :(
Posted by Kiren at 5am on 17.06.11
just had pneumothorax surgery 5 days ago i am now home an in pain feels like my lung is twitcing at times an short of breath is normal and how long will the pain last
Posted by stephen at 8pm on 10.12.12
15 years after VATS Surgery for SP. Had 2 SP’s within a couple of weeks in 1999. First time spent about a week in the hospital with chest tubes and breathing became normal. Went back to work via flight to my destination and my right lung collapsed again, probably from the cabin pressurization. After trying to inflate my right lung, ended up with VATS surgery. Now, after 15 years, my right lung has not collapsed but I still experience periodic chest pain, especially during barometric pressure changes from weather changes. Also, numbness resulting from nerve damage still with me. But, what is much worse is that I am getting progressively worse with shortness of breath. An example, I get out of breath merely teeing up my golf ball. I am currently trying to get some medical help for this condition but I don’t think the Dr’s know what to do about this condition or maybe they don’t understand it. I was never a smoker and I am a very active 80 year old very healthy white male. Anyone experience the shortness of breath after their VAT surgery?
Posted by Branch at 1pm on 25.02.14