Pneumothorax like symptoms 1 year on from surgery
Posted , 18 users are following.
Hi I am just looking to speak to people in the same situation really, and whether anybody can give me any advice. I am a 21 year old female who first started getting spontanius pneumothorax's when i was 19 on both lungs. Last year (when I was 20) they operated on both lungs, on seperate occassions, to perform a bullectomy, pleurodesis and pleuroectomy. (Top marks for remembering the names!) I am now one year on from having the surgery, like others that I have read about on here, I also have the sharp pains on both sides sometimes. They are normally like a sharp stabbing pain for about 30 seconds and then it goes. (Something to do with nerve damage from the operations I have been told). However, the reason why I am writing on here is that yesterday the dreading air bubble sound in my chest came and I was feeling a bit of pain (exactly like the symptoms from my other pneumothorax's). So, I went down to a and e, had an xray which came back fine. However, I woke up this morning, the pain was slightly worse, and the air bubbling sound is still there. I dont know what to do. I feel silly going back to a and e, like im being paranoid or something? Its the air bubbling sound that really worries me though? Has anyone else had a similar experience after surgery? Surely my lung can't be collapsing again after having all 3 procedures on both sides? I would be very grateful for any advice or to hear similar experiences!
1 like, 28 replies
Bogdan welshstudent93
Posted
I am not in the same situation, but I want to at least reply and share my thoughts. I'd imagine any kind of talk with somebody that's been through something similar can't hurt
First off, don't feel silly - NEVER feel silly. Better siilly than sorry. Go as often as you're concerned and as often as you need this weight lifted off your shoulders so you can continue and have a normal life. Don't burden yourself, please.
Furthermore when I had the same thing happening to me before I got the surgery (a few weeks after my 2nd pneumothorax whcih required a chest drain) I was right to do so as there was a tiny colapse of 5%. That's how I ended up getting the surgery.
It is common for people to experience penumothorax-like symptoms without actually having the problem. There's little medical explanation behind it apart from the mind playing tricks on you, nerve damage, irritation or scar tissue forming/falling.
Two weeks after the surgery I've heen to the A&E already because of the most horrendous sound coming from below the ribs on the operated side. I don't know if it can be called blubling or gurgling or whatever, but it usually happens in the morning (if I haven't eaten, perhaps?) when I'm breathing deeply and you can literally hear it from feet away. It sounds like organs or tissue is/are rubbing eachother. I've also started having shoulder pain when sitting (on a chair), very similar to what you experience after the collapses (are you familiar with this?). The xray was completely clear and there's nothing there. The doctors have no explanation for these new symptoms that appeared suddently 2 weeks after the surgery.
I'd imagine this is not what you want to hear but unfortunately it is still possible to get the pneumothorax even after surgery. You'd have to be extremely unlucky but none of us are ever 100% in the clear.
Good luck,
Bogdan
welshstudent93 Bogdan
Posted
This happened a couple of months to me now, I ended up going back to a and e several times because I had a continuous mild pain and that horrible popping/bubbling types noise constantly! Fortunately there was no collapse, and I put it down to new medication I was taking, nobody ever said this was what caused it, must as soon as I came off them everything returned to normal, and since I've had no more pain
As for your situation, I know exactly what you mean by the popping bubbling type sound, it's horrible and can be very scary! But back when I had my ops last year, both times I continued to have the sound for a good couple of weeks after each op. My surgeon told me it was just my lungs repairing after the op. I also had sharp pains every couple of hours, and I continue to have them every couple of days but i have been told it's just never damage after the op what surgery did you have?
Thanks for the reply
Bogdan welshstudent93
Posted
Really happy to hear you're well, in no pain, and everything is in order. These things can be very freaky and put a lot of strain on you psichologically.
I had lobectomy on the left lung (~30% was cut off) and mechanical pleurodesis (theyv'e scrapped my lung with instruments and hurt it on purpose to form scar tissue).
Doctors said the upper part of the lung was no longer working and had giant bullaes (I was a smoker before as well, althought this wasn't the cause, I've been told it hinders air/liquid to be reabsorbed by the lung in case of a leak).
The rest of the lung still has bullaes, but he said he couldn't have cut more because I would've had no lung left. So he said I should expect others popping - so some pain - but no collapse due to the surgery.
Have you experienced any shoulder pain post-op? Not the shoulder blade pain per se which is very common but more the neck, clavicle and humerus (I had to google these bones :P).
I also have a dip below the ribs on the operated side. Apparently my lung (being now 30% shorter) could be a bit lifted - lol. I need to gain some weight asap, looks like I have a hole there :P
Take care of yourself girl and stay strong,
B
welshstudent93 Bogdan
Posted
Yes you too, hope your recovery goes smoothly
marie_lowe welshstudent93
Posted
I see this chat is like 3 years old. Wondering if any of you are still on here. I'm experiencing the same sound you all describe and its driving me nuts. I have an appt set with specialist in 30 days. I'm just curious if you all could tell me if 3 years later you still have these sounds and bubbling. Please if your out there let me know
taylor29961 marie_lowe
Posted
marie_lowe taylor29961
Posted
My surgery was in May. It started in late August, went away in mid sept. and now is back. I have stressed myself out and self diagnosed. I think Pleural friction rub sounds very much like what I'm dealing with. A friend who broke some ribs said they told her to take anti inflammatory, so Im doing that. I so want a solution, I don't want to be put in hospital in Kansas City and I don't want to live with this any longer. Glad to know your doc told you not to worry, hope I get that same answer.
maggieCPhT marie_lowe
Posted
marie_lowe maggieCPhT
Posted
Maggie
I'm in the U.S. as well. Heading to Kansas City today for an appt with a specialist. My bubbling noise started in late Aug. and comes and goes. It has been gone for 7 days but back today just in time for a doc appt. I just hope in some way it is normal and that I don't end up in a hospital. Keep me posted.
emmy0586 welshstudent93
Posted
maggieCPhT emmy0586
Posted
marie_lowe emmy0586
Posted
I hope you a better now. I encourage you to look up a disease called Lymphangioleiomyomatosis (LAM)
It only strikes women and causes the lungs to collapse. I have had both lungs collapse in the past 3 years. My doc did a CT scan and saw the cysts, a biopsy confirmed the diagnosis. It is also hell on pregnant women. I had the VATs on my right lung this May. In late Aug. the bubbling noise started. I did not experience this with the left the lung in 2014. after weeks of freakign out and fear, I made it to a LAM doc in Kansas City in Nov. he showed me a part of my right lung was collapsed. So I have just finished 5 weeks of doing very little, no stairs, bowling etc. On Monday the X-ray showed all was better but I still have noise. I went ahead and bowled this week, now the noise is a little worse than on Monday. I'm totally frustrated. Breathing is normal but noise isn't. I'm wondering if this noise is just going to be a part of life. It sucks. But do check out LAM and or even call the LAM Foundation, there is a website for them you can find by googling, and make sure you do not have it. If you do, you need to seek a LAM doc ASAP and get treatment started.
nickolas80558 welshstudent93
Posted
I am having this problem too...I just had a VATS done on my right side for the second time when my left side started hurting again. Also had one done on that side two, only 4 years ago and this really concerns me. There is no bubbling sounds, just mild pain that resembles a pneumo. I am so scared and feel like I'm going crazy because I've had two xrays in the last two weeks and both came back clean. It's a 4-7% recurrence rate after VATS, but what are the chances of it recurrence on both lungs within a month?
I am 20 years old and trying to finish up a semester. I am really scared I won't even be able to do so..
Please if this discussion is still active, tell me if these strange pains were the symptoms of another collapse or just nothing.
shawn71527 nickolas80558
Posted
The VATS surgery and pleurodesis makes your lung adjerent to your chest wall, it does nothing to your condition. You can still have blebs and pop from time to time. Give it a few days, bed rest, take some advil and it should heal itself.
Hope you feel better!
nickolas80558 shawn71527
Posted
Thanks for the reply!
That's the first news that has been encouraging. I hope that is the case, this has been going on for about two weeks now, although I had an xray done last monday and there was no pneumo.
I am going to see another doctor tomorrow to see if it has gotten worse, but at this point I feel like I am being very paranoid.
shawn71527 nickolas80558
Posted
I recommend a few things. Lay off the stress, drink more water, add apples into your diet, also look into ginseng heard it’s great for your lungs.