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Spontaneous pneumothorax how many reoccrances have you had please I need support??

Posted , 4 users are following.

natasha_45537
natasha_45537

I am 31 years old I have had multi drains and 2 pleurodesis and bullectomy done I was told I couldn't have children I have 3 I was undiagnosed for 7 years and due to the damage of it healing itself nothing helps. I'm now up to 62 admitted phneumothoracies I have an oxygen tank at home and can monitor the severity of them now but has anyone else had this I feel really alone even the doctors can't understand

1 like, 11 replies

11 Replies

  • katia53781
    katia53781 natasha_45537

    Posted

    Hello Natasha, sorry to hear about your condition . In my case it took them 3years to discover that it was due to asymptomatic endometriosis diagnosed only by laparoscopy
    • natasha_45537
      natasha_45537 katia53781

      Posted

      I have to had terrible problems with stomach pain which resulted in a laparoscopy and in that same procedure they removed old endomentrios but never linked these together have you had reoccurring phneumothorax since? Thank you for your time)
    • katia53781
      katia53781 natasha_45537

      Posted

      No problem Natasha . Yes I had recurrent pneumothorax and even had a surgery same side right lobe every time : VATS . They stopped my period médically using decapeptyl for 6 month. Thereafter, i got my period and then Also 6 month after( à year after my surgery) i had a pneumothorax. I was in shock. Had a thoracotomy this Time followed by oopherectomy 40 days later where they knew the cause was endometriosis

  • dan87126
    dan87126 natasha_45537

    Posted

    Hi Natasha,

    I had my first episode about 4 years ago. Got drained. Second episode one yr later. Drained again. Since it was so close together, my dr mentioned that the next time it would happen i will get operated. It happened again on Dec 23! See where this is going...now way they could operate since holiday season and car accidents etc take priority. Drained me again. Happened yet again 6 months later. So 3 drainages and the forth Spontaneous Pneumo was the operation. Everyone seems to have very different after operation symptoms. Mine, all considering are not that bad. Just not perfect. I have my right chest that is numb but no longer electric shocks as I had previosly mentioned. I would suggest to stay busy, active with exercise if you are physically able. I do yoga 2 times a week and that for me works. When I did ask my dr if the sensation would ever return he said "maybe today, maybe never". Therefore my personality kicks in and I say to myself, "live as if it will never come back". This way if it does, even partially, i will be that much happier. Reach out anytime. Be well and think positive.

    • natasha_45537
      natasha_45537 dan87126

      Posted

      I do live in a very positive way I love life and never take it for granted thank you so much it means a lot hearing from others I certainly keep fit and as well health as possible but it is the perfect answer it may happen again or never return so keep on keeping on life's great just gets a little hard sometimes it's nice to know I'm not alone best of luck to you to wink

  • katia53781
    katia53781 natasha_45537

    Posted

    Just one more thing:

    If you are having pneumothorax side side right

    If it is around your period time of 3 days after

    Then think about catamenial pneumothorax

    After my last surgery doctors claim I am cured since they knew and treated the cause.

    Try to see a well k own experienced gyneco and read about catamenial .

    If I helped , i will be very happy

    Ready for any moral support because I understand

    • natasha_45537
      natasha_45537 katia53781

      Posted

      Wow thank you I will get onto this straight away and get back to you I'm up to 62 collapse lungs but it's always on my left does this only occur if it is on your right or can it be either side? wink

    • katia53781
      katia53781 natasha_45537

      Posted

      Dear Natasha,

      You must be very proud of yourself. Being positive is what matters .

      Of course , there are lots of people having the same problem. I wrote asking for a support like you and ended up trying to share and give support . Concerning the left or right lobe issue , I'm not sure.

      You need to go back and track the collapse with your menstrual cycle. If it is around or within 3 to 4 days this a start to think about endometriosis . Anyway , seek a gyneco help.

      I will be here for you because like you it was and still is hard

  • fluffykitty
    fluffykitty natasha_45537

    Posted

    wow, 62 pnemos. Did you have chemical or mechanical pleurodesis. I just had the vats talc pleurodesis around 4 months ago and now am having signs of another collapse. They say chance of collapse is low after surgery but im not so sure. So it seems like i do get small air leaks even after surgery. I notice that they come when the atmospheric pressure rises or in cold, rainy weather. Everytime it rises, inevitably my lung seems to give me pains and gurggling sensations like an air leak. Also when i dont hydrate enou i get lung pains. This may not help you, but wish you well.
    • natasha_45537
      natasha_45537 fluffykitty

      Posted

      Hey there so great to talk about everything yes I had a talc pluerodedis which was a complete was of time it never stuck it caused my bullar to rub with deep breathing not to mention they got a trainee nurse to remove the drains she was unable to do it so I had to take a breath that one breath formed a air pocket to go straight back and force my lung to collapse again it was one of the toughest parts to get through as I'd lost a lot of faith in the medical system and there's been several huge consequential incounyers like this....throughout my health I have now had a bullectomy and pluerodedis mechanical method it's decreased the amount hugely but they may never stop I also agree about weather change and humidity I do suffer a little from anxiety due to so many scary episodes how are you coping...? Stay positive if anything it makes us stronger xx

  • fluffykitty
    fluffykitty natasha_45537

    Posted

    I know how you feel. I keep getting these sensations like there is another collapse and pain runs through my lung even after surgery to fix it. I too have anxiety and panic because i fear i may have to go through another surgery and have to be in the hospital for an extended period of time. But as you say, we have try and stay positive because going the other route just makes me feel a lot worse.
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