Help please !!!

Chest and lungs
1

After a lot of reading in every type of internet forums after ready many articles about pneumothorax this is the most helpful forum i have encounter.
many years ago around 2010 i was 24 i had the flu and prior to having the pneumothorax the night before i been coughing a lot ( latter turn out it was pneumonia ) so i been always under weight since a child but healthy, So this particular morning i was walking on campus and i think i had skipped my lunch time i felt like something moving from my left hip to my upper back then i couldnt breath … an XR showed collapsed left lung i think between 20 to 30 something percent ( i cant remember to long ago) i didnt know how serious it could be so i went to my MD he had an xr machine there he sent me to ER and gave me like it looked like the biggest pain tablet. I arrived to the hospital by then my lung re- inflated. I stayed in the hospital for a week, the pulmonologist told me it just happens since you are very slim and he said MUST OF THE TIME IT HAPPENS AGAIN, those words triggered anxiety and i developed PTSD diagnosed by the ER. so while in the hospital i keep feeling like the Pneumothorax would appear again and i had back pain chest pain and pressure and a lot of irregular heart beat, they did XR every day or every other day and no pneumothoraxes, but in mind i keep insisting something its not normal i got discharged got home my PTSD was on the roof or was it my lung having mini pneumothorazes ? that was my question all along. It took me about 4 years to get over the PTSD, although i still have anxiety and leads to depression. Its been 10 years and my left lung sometimes acts up like i am about to have a lung collapse i believe so because when i carry or push something i get pressure in my back and chest tightness shortness of breath it last hours or long minutes, yesterday i was swimming under water that triggered the same discomfort i just explained, besides that for 10 years everyday i have some time of discomfort for example: singing (not professional but hobby) laying on my bed when i sleep sideways feels something moving in my chest inside, sometimes back pain the entire back from my shoulders to my waist, not often but i get needle pain. i dont want to tire you reading. my reaches have lead me to think this : Do i have blebs thats why i fell the discomfort ? if yes why ? i read blebs its because of genetic diseases ( LAM, Birt Hogg Dude and so on ) or is it catamenial pneumothorax ? i am going crazy with so many possibilities i just wish i know what i have or is it really just anxiety ? So from all this i came down to something that can help me at least to know a CT scan which i never had i ask a doctor she says no need.

also have any of you experience this : when i feel discomfort my blouse stick to my back and or chest area more the left side. like static. i dont know if i am explaining myself clear.

Anything that can recomend me ? i will keep puching for a CT scan…

thank you for your input.

2

Hi there,

I can relate to the anxiety triggered by previous pneumothorax. I had at least 3 (and probably more before the first diagnosis). Pneumothorax is one of the medical condition that triggers a lot of anxiety afterwards because we feel totally out of control about it. It’s like a vital part of our body just stops working all of a sudden and it can happen anytime. Most people don’t realize that breathing plays a large part in their mental well-being until they encounter some sort of breathing problem in their life. I just wanna say that it is totally normal to feel what you feel right now. Almost everybody would feel that way after experiencing it.

I remember when I had my first major episode of pneumothorax. I had a chest drain and since I already had a minor pneumothorax before on the same side, the surgeon decided to perform surgery on my lung to avoid relapses. 1 month later, I was eating lunch outside during a warm summer day. I told my girlfriend I had trouble breathing and started panicking. We took a cab to the nearest hospital, which was 30 mins away. At the hospital, I did an X Ray, which was fine. They told me it was probably anxiety. I’m still not sure if it wasn’t a minor collapse that they didn’t see on the X Ray (which is not impossible btw) BUT you should know that if we can’t see it on X ray (and potentially see a really small one on a CT scan), you can be certain that it’s not life-threatening, if you are otherwise healthy.

As a health professional, I can say that blebs are fairly frequent, especially in the population that is at risk of pneumothorax. Most of the time, there is no real genetic cause (or disease). It’s often a matter of growing up fast, coupled with a lung growth that is a bit too quick. Instead of having little alveoli everywhere, you can have some larger “bubbles” with weak lining that can break up easily, especially in the upper part of the lungs, and sometimes that leads to pneumothorax. It’s not impossible that you have it since small ones can only be seen on a CT scan (that was the case for me, I had several blebs on both sides, for which I had surgery a few years ago). If I were you, I would avoid thinking too much about rare genetic diseases as they are fairly uncommon and most of the time, the simpler explanation is the right one (especially in the case of pneumothorax which is highly correlated with anatomy). Easier said than done, I know. As for catamenial pneumothorax, I never encountered this condition yet during my medical training, and I can’t relate to that of course because I’m a man, but you should know that this condition happens during or around the menses (2-3 days around). If it doesn’t seem to happen during the days around the menses, then it is not catamenial pneumothorax. This is a fairly rare condition. Most of the time, it is part of another condition called endometriosis, which often cause pelvic pain, abdormal vaginal bleeding, etc. Don’t think too much about it if you don’t relate to that.

If you already performed X Rays on several occasions and they revealed nothing and you still feel weird symptoms from time to time, I would suggest you continue insisting on performing a CT scan eventually because blebs are common and can be a reason for surgery if you do have them and if you still experience symptoms. Just know that sometimes blebs can break up but don’t always cause pneumothorax. It can cause discomfort and anxiety without being life-threatening. Nevertheless, a good rule of thumb is never hesitate to go to the ER if you experience a fair amount of shortness of breath with or without pain and TELL THE NURSE that you already had a pneumothorax before and that you are concerned about that. If occasional shortness of breath is a concern and you notice limitations in your life of symptoms happening during physical effort, you could also bring the idea of performing a respiratory function test and a test for asthma to your doctor but from what I hear, your symptoms don’t seem highly correlated with physical effort.

I hope this helps and I will stay available if you still have questions.

Cheers.

3

Hi there.
I suffered my first lung collapse at 44. I had no clue. I had been running around with a cough and was told by urgent care I had bronchitis. After 2 weeks I went to a real doc and learned my lung was 80 percent collapsed. One thing led to another and eventually I had a lung biopsy and a talc plerudesis (can’t spell that word) In the end I was diagnosed with LAM.
Life went on and I had little or no problems and I decided I was misdiagnosed, but then at 47, poof the other lung collapsed. Again I had no idea. I was on vacation. I had a cough at night but not in the day. I got home and went to work. I was very tired but figured it was from the vacation. But then on day 2 I knew. So back to chest tube world, followed by another surgery (3 years ago this week). For the next several weeks. my lung made weird sounds. If I moved just right, it sounded like it was passing gas. I knew something was wrong but of course the terror. I made it to a specialist in Nov. 6 months after surgery. Yep I had a hole in that lung again. But since I had the talc. He opted to tell me to take it easy and wait. After about a month. The hole healed itself thank goodness. So now its been 6 years since my first surgery and 3 since my last. I am diagnosed with LAM so my specialist put me on the only FDA approved drug for the condition called Sirolamius. (spell check again) LAM only strikes women, I believe there is only one case of a male being diagnosed on record. I don’t know anything about you except what you posted, but if you fall in a category where you want to rule out LAM, go to a doc who is a LAM specialists. They are pulmonary docs but they study the disease as well. There are only about 20 in the U.S. I go to Dr. Carlos Girod in Dallas, Texas. Visit thelamfoundation.org for a list. I don’t know if this helps you at all. But hope so :slight_smile:

4

hi, thank you thank you i feel at least mentally better lol. this “sometimes blebs can break up but don’t always cause pneumothorax”. I am suppose to be under a psychiatrist treatment because of my anxiety levels and my hair has been falling for many years. Your words lift me up, and its true that i have to stop searching on the internet that wont help sometimes, but i am glad i wrote hear. My grand mother had chronic asthma and i was about 9 years old i remember i had to go to the hospital and they put me on a manual breather for a couple of minutes then went home never happened again and i never new what was all about lol. i was diagnose with scoliosis with 10 years old or so and thats something i want to look up because i dont know if its skeletal related. I did had EKG and ultrasound of the heart all good. as a last resort i would like a stress test because my heart goes fast after i urinate or get up my bed.
like you said the fact that xr rays are negative i should be more positive.
thanks again.

5

Hi, thank you for the reply , my lungs that i know off dont collapse but it seams like it will or semi, i listed a few diseases because i because of my anxiety i think i have many things. the thing is i dont have medical insurance thats why its hard to go to a good specialist but i will next year hopefully, the doctor i am seeing its from a hospital that give me some type of help and because they get so many patient the doctor dont get me to serous. Any ways i wont give up.
thank you once again, and it seams your living a pretty normal live regardless of your diagnosis.
Wish you the best. by the way i am in miami i think they have good doctor as well since its a big city. and i will check out the web site you gave me.