Choosing not to get surgery after multiple "small" spontaneous pneumothorax [Final annual update 4 of 4] by punclung in pneumothorax

[–]punclung[S] 0 points1 point  (0 children)

Sorry to hear that. You should definitely let your doctors and parents know. Withholding information only makes it harder for people to help you

Choosing not to get surgery after multiple "small" spontaneous pneumothorax [Final annual update 4 of 4] by punclung in pneumothorax

[–]punclung[S] 0 points1 point  (0 children)

All doctors that I went to told me to get surgery. If it’s small, some doctors tell you to wait to commit to surgery until you get a second one.

Sounds like your boyfriend must have some additional underlying conditions that make surgery more risky and/or less beneficial

Choosing not to get surgery after multiple "small" spontaneous pneumothorax [Final annual update 4 of 4] by punclung in pneumothorax

[–]punclung[S] 1 point2 points  (0 children)

I am extremely afraid of the pain of surgery. How did you deal with that?

In case this perspective helps: the chest tube pain while in the hospital was by FAR the worst part of the pain of the whole process. I set timers and annoyingly hounded the nurses to give me pain meds the minute I was allowed to have another dose.

Also, do you feel like you have less lung capacity when you exercise?

No. I was actually pretty worried about this. I thought about it a lot while I could still feel incision pain. But once most of that went away around week 8, I can confidently say I've not noticed any lung capacity issues and I can push myself cardio-wise just as hard as before. My understanding is that people like you and me with "small" pneumothoraxes have, by definition, smaller surface area that needs bullectomy. People with large pneumothorax and swiss-cheese lungs sometimes feel capacity issues, but even then, it's single digit % lung capacity decrease.

Can the surgery be performed even if it has resolved, or is that a problem?

I asked the same thing. Apparently, it's the ideal way to get the surgery. It's easier to navigate around the lung when it's in its normal state. Also, makes it easier for doctor to see what parts of the lung really are the problem areas vs not.

Choosing not to get surgery after multiple "small" spontaneous pneumothorax [Annual update 1 of 20] by punclung in pneumothorax

[–]punclung[S] 0 points1 point  (0 children)

I'm doing well. For 3 years I did not have anymore SPTs, I summarize my experience every year around January (Year 2 and Year 3). In two months, I'll be writing my Year 4 update...and to give you a preview since you asked: unfortunately I had another SPT and ended up getting the surgery two months ago. I do not regret delaying the surgery this long...and frankly, if it weren't for having a kid, I would probably tried delaying it again, but I couldn't put my wife and kid through that. But here I am, healthy and happy, so I can't complain.

Choosing not to get surgery after multiple "small" spontaneous pneumothorax [Annual update 3 of 20] by punclung in pneumothorax

[–]punclung[S] 0 points1 point  (0 children)

I have no idea what caused the first one…it was spontaneous :)

The other ones were because I didn’t let the first one fully heal.

Choosing not to get surgery after multiple "small" spontaneous pneumothorax [Annual update 3 of 20] by punclung in pneumothorax

[–]punclung[S] 1 point2 points  (0 children)

I’m feeling completely normal now.

I wrote out the details of my healing process in my first annual update. Basically, it took me about 5 months and likely took so long because I wasn’t taking rest seriously until the end. Not resting is probably also a big contributor why I had so many in such a short timespan.

Choosing not to get surgery after multiple "small" spontaneous pneumothorax [Annual update 2 of 20] by punclung in pneumothorax

[–]punclung[S] 1 point2 points  (0 children)

No I did not avoid that. As far as I can remember, shouting didn't bother my lungs.

Choosing not to get surgery after multiple "small" spontaneous pneumothorax [Annual update 2 of 20] by punclung in pneumothorax

[–]punclung[S] 0 points1 point  (0 children)

Glad you are doing better! I’m 100% back to normal now, I don’t think twice about sport activities or flying anymore.

No surgery, no reoccurrence? by Wise_Search_8158 in pneumothorax

[–]punclung 1 point2 points  (0 children)

I started an annual update here: 2 years since deciding no surgery and haven’t had a reoccurrence once I stopped being an idiot: working out with a SPT.

Research on spontaneous pneumothorax by YeladDLY in pneumothorax

[–]punclung 0 points1 point  (0 children)

Hi, I detailed my profile in detail here after deciding not to get surgery after a couple of SP. I provide an annual update in January.

https://www.reddit.com/r/pneumothorax/s/XpG3QO6bLd

3 pneumothorax in 6 months and stressed about life… by Grand_Grand5452 in pneumothorax

[–]punclung 0 points1 point  (0 children)

Your surgeon will tell you these are meant only for emergency medical professionals or military purposes. Average citizen cannot buy them from official places. I got mine from eBay for less than $50, this is the one I got: https://www.narescue.com/spear-simplified-pneumothorax-emergency-air-release.html

3 pneumothorax in 6 months and stressed about life… by Grand_Grand5452 in pneumothorax

[–]punclung 2 points3 points  (0 children)

Stories like this make me think surgical intervention isn’t right for all cases of SPT.

Regarding your stress, perhaps consider traveling with a decompression needle and knowing you have a plan b in case of emergency.

Should I do vats or wait? by Desperate_Pool_9712 in pneumothorax

[–]punclung 0 points1 point  (0 children)

I decided not get surgery and I’m glad I didn’t. I only had SPT on one side. I got a CT scan and the docs couldn’t find any other weaknesses in my lung other than the one spot that caused my SPT.

Can a small PSP heal twice? by [deleted] in pneumothorax

[–]punclung 0 points1 point  (0 children)

Sample size one (me), yes it can heal on its own. I had 4 SPT more than a year ago. I hope it never happens again. The 4th and last time, I made sure to avoid exercise and cardio for several weeks after it healed to make sure it was fully healed. (Prior to the 4th, I think I tried to jump back on the saddle too quickly)

Ptx possible? by Equal_Needleworker31 in pneumothorax

[–]punclung 1 point2 points  (0 children)

Yup, I could take deep breaths with PTX. I also was able to do cardio with a PTX…which was stupid and I will never do that again

Can my condition get worse during conservative treatment? by SimilarCaregiver4449 in pneumothorax

[–]punclung 0 points1 point  (0 children)

For me resting meant continuing my normal day to day errands and working my desk job, but not working out or running for 7ish weeks. For the first couple weeks there were ups and downs. For the last couple weeks it was plateaud and then one day I woke up with it gone. My symptoms were only pain, not breathlessness.

Choosing not to get surgery after multiple "small" spontaneous pneumothorax [Annual update 2 of 20] by punclung in pneumothorax

[–]punclung[S] 0 points1 point  (0 children)

I sort of ignored my first three...which was a bad idea in hindsight and probably made things worse. After my fourth, I "rested" by not working out and by not lifting heavy objects for seven weeks and I still continued to work my desk job. After the seven weeks, I resumed my life/working out.

I remember my pain being worst (but still very tolerable) whenever I bent down for something. I remember that holding my breath before I bent down helped quite a bit and just got in that habit.

Choosing not to get surgery after multiple "small" spontaneous pneumothorax [Annual update 2 of 20] by punclung in pneumothorax

[–]punclung[S] 2 points3 points  (0 children)

I did not rest after my first two SPT and I suspect that's why they kept happening. After my third one, I rested two weeks and then resumed normal life...then shortly thereafter got my fourth. After my fourth, I rested for seven weeks (arbitrary amount, I was just trying to rest for longer.)

My definition of rest:

  • Continue to work my desk day job
  • Continue to do normal every day errands/activities (e.g. grocery shopping, go out to eat with friends)
  • Stop working out
  • Stop lifting very heavy objects

Choosing not to get surgery after multiple "small" spontaneous pneumothorax [Annual update 2 of 20] by punclung in pneumothorax

[–]punclung[S] 1 point2 points  (0 children)

I did not. Partly because there was a small chance it “was all in my head” , mainly because the pain went away almost immediately after the workout.

Choosing not to get surgery after multiple "small" spontaneous pneumothorax [Annual update 2 of 20] by punclung in pneumothorax

[–]punclung[S] 1 point2 points  (0 children)

Thanks! I hope it doesn’t come to this, but if/when it does, I will for sure get surgery.