Phneumathorax
Posted , 4 users are following.
I am 28 and have had a phneumathorax twice since June and am awaiting surgery. I'm really scared and I'm trying to make sense of my pains all the time. Last week I was having a weird sensations along with pain in my left side where it happened. Upon going to a and e they said my lung is fully inflated and I shouldn't be suffering with pain.
1. I would like to know if anyone feels tight chested even when they know their lung is not collapsed. I am developing a paranoia about my heart.
2. I'm really in two minds about having the surgery. But don't think I have a choice, it's either have it or continue to have fatal phneumathorax. I have my pre op in two days is there any advice anyone would like to give me when discussing my pre op?
3. Anyone else had this happen after long haul flights?
4. There has been a discussion around a condition that affects my connective tissues. But I don't display the characteristics in my appearance other than being tall and slim. People with this condition usually display distinctive features facially have very long fingers and very gaunt faces due to the inability to keep weight on. I dont look like this, However I am hypermobile (very flexable), have a heart murmur was born with scoliosis, prone to clicking and snapping joints, now having repeat phneumathorax. But doctors often mention it, but don't think I have it to look at my appearance but I'm displaying a lot of the symptoms. I see someone else mentioned a connective tissue disorder and wondered if you could tell me how you are affected and if you display the characteristics of marfan in your appearance.
0 likes, 5 replies
jonathan123 Frayniac
Posted
Hello Frayniac
I'm 36 years old male and had my first spontaneous at the age of 20 and had numerous episodes up to the age of 31. I have even had a tension which would have killed me but luckily I had a quick ambulance arrive and give me immediate treatment. I'm quite a slim guy so fit the brief. I have had Vats surgery and pleurectomy. 1st one didn't work hence the 2nd more serious op. All in all definitely have the op for peace of mind. I have not had an episode since. I was a heavy smokers hence why I think the 1st op failed. So if you smoke give up! The good news is I am into training weights since my episode and now lift very heavy weights and have increased my size to a medium build. So on the plus side no problems with training. I also last year did 40 flights and this year have done close to 50 short and long haul flights (my work I travel a lot) Again good news never had a problem. Yes I get the odd chest pain but I've come to accept it and will normally just have a standard Nurofen tablet it needed. So I hope this make you feel better. Yes it's annoying but don't let it get in your way of life. Have the op... It's done to prevent it happening again. I wish you the best.
Frayniac jonathan123
Posted
Hello jonathan,
I wasn't a heavy smoker and would go up to a month without smoking anything at all. I did go through a phases of smoking heavily at times due to smoking with friends socially or turning to it at times of stress but it was never a constant thing. I had no problems stopping smoking and the ct scans show no evidence what so ever of smoking but I am still kicking myself just in case I have done something. I do think I was prone to it happening but have definitely brought it on earlier in my opinion even though doctors have reassured me not.
Your reply means a lot to me. I have avoided looking at the Internet since last may in case I read horror stories and yes there are many!!!
May I ask what the difference is between Vats and pleurosectomy?
Otherwise I am the same very healthy eater, avid gym goer, I loved riding my bike. I had my first phneumathorax after getting off a 13 hour flight and it happened as I was riding my bike to work the next day. I'm so thankful for your reassurance. I have been looking to speak to someone in a similar situation for support as my head had totally not been able to get around this. I am dying to get back in the gym and ride my bike again!!! Also I don't think people can understand the panic which sets on when you think you've had another, and also coping with the atmosphere in hospotal was horrendous. The woman next to me died on my first nigjt and it was the most horrific thing I've ever seen. Having the lung drain and the suction just totally disturbed me. All reports of the operation seen to be that it's painful and I'm not going to lie I'm scared! Plus generally I feel that no one can fully understand what it's like unless it's happened to you.
Thank you for your time in replying. If I have any other worries I may very well write to you on here to see what u find as normal. Doctors are telling me that I shouldn't have any pain if my lung is fully inflated. But it really bloody does and it spins me right out.
Thanks again
Nicola
jonathan123 Frayniac
Posted
Hi Nicola
I hope I can be of reassurance
You are right a pneumothorax isn't generally caused by smoking as its usually healthy tall, thin peope some who haven't ever smoked. I mention smoking as I think any lung issue makes smoking a definite no no! In my case I think it contributed to my 1st op failing, well doctors think so..
The difference is VATS is key hole surgery which is a smaller op an involves tiny incisions and a talc type substance to attach the top of your lung to the wall. Pluerectony is actually cutting through the muscle and removing part of the plural (normally if VATS fails which is rare) This normally is the 2nd operation and will leave a scar. I say it was a shark attack haha. Sorry for the light humour!
I could go more into the ops but best speak to your doctor for full details.
The funny thing is after I had the tension pneumothorax that could have killed me, I welcomed the operation. Anything to make me think it won't happen again. Yes a bit of pain during the operation but you are in hospital, have good pain killers and if any problems you are at the best place. Better than living a life thinking what if?
Honestly pain wise I constantly get. Again my doctors say a lot of similar cases say the same thing. It's just in their words the nig nags!
Hospitals can be daunting of course at a young age too it isn't ideal. But think of the positive it's there to help and get you back on track for a normal life
Any other questions let me know
Thanks
beth02617 Frayniac
Posted
Sorry you are going through this. The first year is the worst as you try to figure out what is going on. First of all only rarely is spontaneous pneumothorax fatal. So take a deep breath. You're going to be okay. How large were your collapses?
My daughter has had three collapses in three years. All of hers were fairly small (25% or less). She has not had surgery. She has pain pretty much every day. Some times it's just a slight annoyance. Sometimes she's in a lot of pain. The first year she made several visits to urgent care thinking she had collapsed again, but X-rays showed nothing. Now she knows what to be concerned about and what not to worry about.
She is tall, thin, hyper mobile, has mitral valve prolapse, 14% curvature (scoliosis). They screened for Marfans but don't feel it fits her. There are other connective tissue disorders that they could test for, but at 17 she is not interested in doing that right now. A diagnosis would not change treatment.
like I said the first year was rough. Now she knows what is normal for her and doesn't let it get her down. She tries to stay active and enjoy life. If she has another collapse they will probably want to talk about surgery. If it's another small one, I don't think she will do it. From what I've read, surgery doesn't seem to stop the pains that occur without collapse. If it was guaranteed to fix that, she probably would consider it. If she had a large collapse she would probably consider it too.
hope this was somewhat helpful. Feel free to ask any questions.
alex71431 Frayniac
Posted
Hi Frayniac, I cant comment on connective tissue dissorder, but I have had a spontaneous pneumothorax and I dont know why. I have my follow up appointment with a respiratory specialist at the end of Jan. I hope to find out why then.
I do alot of flying for my job and average about 12 flights every 6 weeks around Europe. I train often and it happened an hr after doing sprints and a swim.
I know what yu mean about being paranoid if it has happened again. I am out of the hospital 3 weeks, and everyday I get a stabbing pain somewhere in my chest and I think "oh no, has it happened again". It soon goes away, but I have also felt short of breath now and then - like I cannot take my deep breath that I need.
What surgery are you scheduled to have? Hope it goes well for you.
Alex