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Post Thoracotomy Syndrome
pdog1 posted:
Had surgery for a collapsed lung 2 1/2 months ago. Still experiencing lots of pain in my chest & don't still get winded. Doc says my lung is doing great - Shouldn't I be feeling better by now?
ctbeth responded:
hello pdog1,
Chest pain should be evaluated by your MD. Your MD said that you're, "doing great", which is fine, but did you discuss your residual discomfort/pain with the MD?

Surgery, of any nature, can take a very long time to completely heal. I, personally, do not think 2-1/2 months is long enough healing time that you would feel like you did before.
Ask your MD and give yourself some time
auntlaurie52 responded:
What type of incision did you have? It is not unusual to have residual pain from a thoracotomy incision for 4 to 6 months.
An_240460 responded:
Hi There,

If you have Post Thoracotomy Pain Syndrome you will NEVER be free of pain EVER again.

Your doctor will try to get you to take all sorts of stuff but the ONLY thing that works for PTPS is opiates.

Doctors don't want you to know that PTPS happens in as many as 80% of people who have a thoracotomy.

Doctors also don't want you to know that the #1 killer in the US is heart attacks, the #2 killer is strokes and the #3 killer is doctors. I swear that to be the truth.

Here's some links about PTPS that you might find helpful...

Good luck!
annette030 replied to An_240460's response:
I realize that you are one of the unfortunate people with PTPS, however, after reading at all the sites you provided, the majority of them said that 65-67% of thoracotomy patients might develop this problem, not the 80% that you mention.

They also said that all but about 5% were able to be treated with fair-good relief. Only a very small % of patients had severe pain after a thoracotomy that was actually disabling. That is no comfort if you are one of those people.

It seemed that epidural or intrathecal opiates were often used for treatment early on after surgery in the post op period. I did not read about oral opiates in these studies, either for early use or later in treatment.

I have found the NIH studies to be more reliable that others, you have to read how many people were studied, who paid for the study, and what kind of study it was, to rate them as poor, fair, good. Double blind randomized studies are the gold standard, but not always available, a large number of participants is better than the small studies. Who paid for the study or set it up is always interesting.

I hope you feel better soon and find a doctor that you work well with, if you haven't already.

Take care, Annette
guinea_pigs replied to annette030's response:
Hi Anette,

If you read this one from European Journal Of Cardio-Thoracic Surgery you should be able to see that it says, among other things, "Further studies have estimated the incidence of chronic postthoracotomy pain at 11—80%"

So there is one "mention" of 80% and I'm sure throughout my reading I've read many more instances.

I apologize if I sound bitter, but by golly I am bitter. I'm sick and tired of doctors acting like God. I'm a grown GD man and I know when I hurt and when I don't hurt and I don't appreciate GD doctors that question that!
annette030 replied to guinea_pigs's response:
I understand that you feel bitter.

That said, read the rest of that paragraph. It describes pain as any discomfort at all, and is only talking about two months post op. I have never met anyone who had their chest cracked open that did not feel some discomfort for at least TWO months!!

I am not doubting that this pain syndrome exists, but you must read all the studies very carefully. Often they are done on a very small number of patients, or have strange conditions and definitions. That can radically change how they turn out.

I believe that you hurt, so don't yell at me.

Take care, Annette
ctbeth replied to guinea_pigs's response:
The statistics here, ", "Further studies have estimated the incidence of chronic postthoracotomy pain at 11—80%"" are an odd way to cite percentages, right?

Would you mind telling us what condition that lead to your have thorax surgery? That is serious stuff.

Are you the person who started this thread? It was 2 1/2 months post op. If so, I am so sorry that you're still not feeling well. Initially, it seemed more hopeful as you were pretty-recent post-op.

Thanks for your consideration, and I hope you'll write again.
wschertz replied to ctbeth's response:
Hi, So I am also one of those people with really bad PTPS. I had a wedge resection on one lung, started with video, then after severe complications a few days after went to a mini-thorocotomy. This was about 3 years ago. Then about 1 1/2 years ago, I had an upper lobectomy on other side. This was caused by what was diagnosed as COPD and I had giant boullous emphysema in both lungs, I was only 52 when this happened so if anyone asks, smoking is definitely bad for you!

So here it is years later and I am living my life normally again. I am so very grateful to a team of fantastic surgeons! The only downfall is that I still have very bad pain on both sides of chest and it definately hurts when I laugh or cough. I had a plural tent on left side so have several areas on front of chest and on side under arm that if someone touches, I am on the floor in pain. Also, ribs on both sides where ribs were separated for surgey just hurt all of the time and definitely sensitive to the touch. Without some sort of prescribed pain medication, is moderate to severe and even then, it is still mild. At first my doctors had me on hydrocodeine and it worked very well. I recently moved to another state and was immediately set up with a well known pain clinic. They started me on a pregabalin, started with 2 75 mg twice a day. This did not work very well so they moved me to 300mg twice a day. It works a bit better but still not nearly as good as the Hydo. They also want to do some nerve block injections in a few weeks so we will see how that goes.

This is a real thing and I don't have to see any kind of statistics to know it. Every professional I talk to about all agree that is it due to all of the nerve damage that occurred during surgey. Nerve damage is not something that goes away, so as this post first started, if you have this, you will never be totally pain-free. I'm not saying this will happen to everyone that has open thoracic surgery. My case was rather extreme and I came close to dying during 1st surgical endeavor and surgeons had to do an emergency mini-thorocatomy and 2nd surgery took over 10 hours due to the horrible shape of my lungs.

With all that said, I definately don't want this post to cause anyone that is going to have open thoracic surgery to change you mind about having it. This was a life changing event for me and went from not being able to walk 5 steps at times to going back to a very normal life. If I had to do it all over again, I would definately take the same path. The chronic pain is nothing compared to not being able to breathe!

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