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Does Anyone Else Have Post Thoracotomy Pain Syndrome?
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An_240460 posted:
Hi,

I had a thoracotomy 14 months ago and my pain now is worse than the pain that drove me to the hospital to start with. It hasn't "come back", it's been here the whole 14 months.

The problem is that my doctor looks at me like I'm stupid when I tell him I have Post Thoracotomy Pain Syndrome. He refuses to believe that such a thing even exists.

So I was hoping that some of the readers of this forum might post their experiences with Post Thoracotomy Pain Syndrome, so that I might get my dumb a** doctor to at least acknowledge that it's real.

Also I'd just like to hear from people who are going through the same thing I am. My pain is EXTREMELY severe and I can't get my doctor to treat it at all. So what do I do about it? What did you do to get treatment?

Thanks,
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annette030 responded:
Why did you have the thoracotomy to begin with? Was it supposed to "cure" the pain you a were having?

If the pain is the same as you had before the surgery, and never went away at all, I would question whether you have "post thoracotomy pain syndrome" or if you just still have the original pain that you started out with?

A "syndrome" is a collection of symptoms, what else do you have besides the pain that you started with? I have never heard of this particular pain syndrome, but all surgery causes pain, numbness, and other indications that nerves were cut during the operation. It takes time for them to heal again. I took about a year, or a year and a half, after each surgery that I have had to completely recover. I continue to have some numbness in my neck just below my jaw from cervical disc surgery that I had back in 1992.

I would suggest you see a pain management doctor, what kind of doctor do you see now? Is he a pcp, the surgeon who did the surgery, a neurologist, a PM specialist?

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

I went to the doctor because I thought I had a kidney infection. I was admitted that day. The next day the doctor said I didn't have a kidney infection, I had a broken rib. Then 2 days later he told me I didn't have a broken rib, I had pneumonia. Then 3 days after that he told me I didn't have pneumonia, I had pleural effusion.

The pleural effusion is what I had the surgery for a week and a half after I was admitted. Pleural effusion, if you don't know, is fluid outside the lung.

The best I can tell from researching pleural effusion is that the doctor should have done a thoracentesis (done with needles and a drain tube), but instead he did a surgical pleurodesis where he actually removed my right lung, cleaned it, scuffed it up with a block similiar to sandpaper, and also scuffed up the cavity in my back, then put the lung back in.

A pleurodesis is meant to scar the lung and the cavity and make them grow together so that fluid cannot get between them again. It's my understanding that a pleurodesis should only be done for recurring pleural effusion which mine wasn't since this was the first time I had it.

The doctor was a thoracic surgeon in the biggest hospital in Bay County Florida.

My pleural effusion is long since gone. I did NOT say I had the same pain as before. I said the pain I'm having now is WORSE than the pain that drove me to the hospital to start with. There's a BIG difference. It's not the same pain or even the same level of pain or even in the same place. It's a different pain and it's WORSE than the other one.

What I'm having trouble getting the doctors to see is the same thing you question when you say "I have never heard of this particular pain syndrome". By your comment I can only conclude that you are not a doctor, or that you don't work with anyone who has ever had a thoracotomy.

I can't see a pain management doctor, as you suggest, because my doctor won't refer me to one and all the ones around here have to have a referral.

My doctor is just like EVERY other doctor.... no matter how nice they seem to your face.... they have one thing in mind..... fattening their bank account.... while keeping you as sick as they possibly can. I truly 100% believe that.

My mother had never been sick a day in her life. When she was 93 she was diagnosed with lymphocytic lymphoma and the doctor immediately started chemo. Eleven months later she was dead. Then we found out that lymphocytic lymphoma just about never kills anybody and can take 25 years or more if it does. So mom had a chance to live to be 118 before she would have had to worry about it. The cancer doctor that started her on chemo must have known that she would outlive the cancer, but he gave her chemo anyways. He just as sure killed her as I'm writing this.

Anyways, back to my pain. Yes, Post Thoracotomy Pain Syndrome DOES exist. Google it and you'll get MILLIONS of hits, and you'll find out from reading about it that THOUSANDS of people suffer from it. Some of the stuff I read about it says it occurs in 50 to 65% of thoracotomy patients and some of the stuff says it occurs in 50 to 80% of thoracotomy patients. And these are medical websites that I'm reading. For example this one from European Journal Of Cardio-Thoracic Surgery http://ejcts.ctsnetjournals.org/cgi/content/full/18/6/711

I can understand any doctor not knowing about something, but when you show them in black and white and they still refuse to believe it, it's because of their pride and ego that they play God and end up hurting patients more than helping them. That's when they're dead wrong, in my opinion, and I've NEVER seen a doctor admit their mistakes yet. Have you?

 
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fenton04 replied to guinea_pigs's response:
Hi I have been reading your posts and I am not quite sure what your agenda is. But I want to wish you luck in all your future endeavors....
 
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annette030 replied to guinea_pigs's response:
I read that article that you posted the link to, at least I read most of it, scanned the rest, it said 50% also. I already Googled PTPSand read all about it.

Although I have worked as a nurse for many years, most of it was in ICUs and ERs, not places where you see a lot of folks with this problem. I have taken care of lots of thoracotomies, but they were just barely out of surgery, after a few days most moved on to other areas of the hospital and I never saw them again. I have never claimed to know everything, neither have most doctors that I have worked with.

Your initial post does say in the first paragraph that the pain has not come back, that it is worse than the pain that took you to the hospital, and it has been there the entire 14 months. I am sorry if I misunderstood you. That is just part of message boards, it is not the same as sitting face to face and asking and answering questions. It is not a big deal. Thanks for the further information.

I get from your post that you are very angry about the whole experience. I would not pretend to know why your surgeon did what he did, or why you let him do it. When we are sick we often tel doctors decide for us what is best. That is fine as long as they are right, but they aren't always right.

Where I have lived in the western US, I have been fortunate with the doctors I have dealt with, few if any were like the money grubbers you are talking about.

My mom died of cancer at 69, I would have loved to have her until age 93.

I hope you feel better soon.

Take care, Annette
 
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87tygr responded:
You are right, there is such a thing as Post Thotacotomy Pain Syndrome. My boyfriend has experienced this for over 10 years. Even his sister, a nurse, tells him it is all in his head. I know it is real pain because I have seen how dibilitating it can be. He had a thoracotomy because he recieved a gunshot wound in his lower chest/side. His lung collapsed so they opened him up to remove bullet. Amazing he even survived. I believe the thoracotomy caused nerve damage which results in his chronic pain. He experiences chest tightness and somedays the pain keeps him in a fetal position. Little has helped. I am encouraging him to go to a pain management clinic. Nothing is more frustrating than relying on a doctor that doesn't believe you have an issue.

I hope you have found some relief. As I continue to reserch PTPS, I am encouraged to find more information about it.
 
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TDXSP08 responded:
Well i am not a person who is going to debate whether someone has pain or not and the cause.

You obviously have pain and want it treated and can not get a ref feral to a Pain Management Doctor for evaluation,which at this point i would say for you is a GOOD THING !!

Why you ask is it a Good Thing is reports out of Florida say that currently Nobody is writing scripts for anything that you can not get OTC they are shutting down the "pill mills" by taking all prescription level Painkillers away from everyone,for how long is unknown but they are causing needless suffering by these actions.

So fight for a referral when it will do you some possible good not know when they will just tell you to but Asprin .
i have no small step for man, but i have 6 tires for mankind,Watch your Toes!
 
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Kp102090 responded:
Yes it is very real!!!! I had a thoracotomy 6 months ago and last week i was diagnoed PTPS. I have severe pain from the ribs up all the the time. I understand what its like to have drs look at you like you are stupid and tell you your pain isnt real ive been dealing with that since they found my tumor. Every dr i saw treated me like i was only there for the pills because im young. The only advice i can give you is bug the crap out of him until he either listens or reffers to someone who can help you.
 
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Meyer1102 replied to Kp102090's response:
In 2001 I donated my left Lung 2/3 to my daughter she died after the operation it called a living lung transplant we were never told long term complic for donors my husband donated his right it took about 5 years for the pain to almost go away it was the most painful operation my was under my left breast to armpit my husband thru his right back in 2008 I started having chronic chest wall pain from the operation I have been thru every test and medication for me the best medication has been Effexor because it numbs some of the pain when you use narcotics it numbs too much pain and you overdo I'm still in moderate pain but I can function carefully too much lifting and walking sets off bad pain and several times I've used tylenol with cod found stronger narcotics did not work I am able to lead relatively normal the pain is real I have the top doctors and it's a complex dance of pain and a quieting down of pain but I've accepted it will last the rest of my life. Neuron tin lyrica all crap a Snri helps even though you don't want to take them you have to accept that you need to when I stopped taking them boy did I realize how much pain it was covering I suppose cymbalta would work too but that is way too strong for me hate the medicines but even hate the pain more can get it in generic venaflexline first few weeks want to give up on it but stick with it it might help you
 
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GrumpyLumpy responded:
While this is the first time I have heard this symptom given a real name, I have been having extremely debilitating pain, intermittently (roughly 2 to 4 times a week). First, I'll give some details:

Fall 2010 - I had to have a pulmonary lobectomy (upper lobe - left), due to a very invasive batch of aspergillosis. This infection was so bad that my surgeon discovered something... eating my 3rd rib (not exaggerating). He bisected the rib, and threw it away, leaving a roughly 2 to 3 inch stub of rib attached to my backbone. The ventral side of my body has a little less than half the remaining rib bone.

Today - I have painful "stars" in the entire left side of my chest and a numb nipple (maybe that shouldn't be a big deal for a male, but it feels very uncomfortable). My trapezius and lat on that side feel like they are being pulled very tightly over this stump of rib at times and the results are terrible:

1. Left trapezius is always (yes ALWAYS) inflamed and sore. It's about 15% larger than the right, for my guess. Was symmetrical prior to surgery.
2. Left lat seems to pop back and forth very painfully over this bone nub (7-8 on the medical pain scale at times) if I actuate my left arm across my chest at ANY angle.
3. Chronic severe stiff neck and tension headaches from the trapezius tugging on my neck.
4. Occasional loss of function in the entire upper left arm. This is tricky to explain: The muscles respond to me and I can feel them, but actually using them for even the tiniest task is so painful at times that it has literally brought me to my knees.

I am an otherwise healthy 38 year-old male, African American. Six feet tall and around 185 lbs with what is left of my once athletic build. I'm a former US Marine, sprinter, football player, and martial artist... I am no stranger to pain and perseverance. Sadly, I can't workout with any real intensity, as brisk walking, jogging, weightlifting and jumping all hurt like the flames of hell on my left side... if you'll pardon the descriptor. Worse still, this issue has cost me my career (IT/Tech Support) as well, since I have a "clean bill of health", everyone thinks I'm crazy when I can't lift a pencil one day, but can lift a server with the same hand the next.

YES. This is a real problem. No, it's not in my head, but my back, neck, chest and upper arm. I hope my tale helps your doctor(s) see the light.
 
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caspertab replied to GrumpyLumpy's response:
During surgery 9 (2003) years ago on my finger, the anesthesiologist punctured my lung. The emergency room doctor inserted the chest tube in the wrong place. A Cardiovascular dr. reinserted it. Three weeks later I had severe burning and stabbing sensation at the chest tube site. I went to a pain management dr. and we tried all medications which I could not tolerate, and many nerve blocks. I had a Spinal Cord stimulator implanted in 2004 which helped but I also needed opioids. After a few years the opioids weren't effective unless I took a large dose of them. In 2007 I had a pain pump implanted and the Morphine and Bupivicaine have helped the pain in the rib area greatly along with the stimulator. In 2011 I began having tingling and severe pain at my pump site. I have had many procedures to find the cause. Recently I had a disco gram and it showed a leak in one of the discs. I have my pump filled every 45 days and will discuss where we go from here at that appointment. I can relate to your pain and in the beginning I had difficulty finding a doctor who would first take me because another doctor caused my pain, and one who would believe I was experiencing so much pain. I too can do things one day, and not the next. I had been an acrobat and participated in all sports and I can't do any of that which at first really upset me. I now accept what I can do and can't. I had to retire from my job due to the pain and I volunteer at 5 different agencies which is very rewarding. Fortunately I have a good rapport with my dr. and he knows I have pain and listens to me. I haven't been able to find anyone who has experienced post thoracotomy pain. If your dr. doesn't believe you, find another one. I went to 4 before I found the one for me. Keep your chin up and hang in there.
 
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Cariebuggie responded:
Hi , you are so not stupid, I have this and my neurosurgeon is the one who told me I have it.
 
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Cariebuggie replied to Kp102090's response:
I have had three thoracic surgeries and i am young, It all depends on how knowledgeable your Doctors are. I love on the East coast and we have the best Doctors In Boston, It sucks but you have to keep fighting.
 
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Cariebuggie replied to GrumpyLumpy's response:
I know how you feel. I have a floating rib as well and one they took out due to my back. Sucks. When that rib moves I can feel it. Feels like it is coming out of my skin. I am so sick of talking about it and not having people understand. i am 35. It had cost me a lot in my life. But you already know that. Sometimes i feel like my lungs are being crushed. But I do have great doctors and I feel sorry for the people who do not. i try to exercise everyday. that helps but painfull so I just work thur it.
 
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justin25864 responded:
I am having the same issue. I had a thorocotomy to remove my lower left lobe of my lung. Had clots in both lungs. I was treated with oxycontin and morphine tablets to my suprise it did not work. they put me on percocet 10-650 it worked for about a week. i told the doctor that it wasnt helping and he had said i should not be in pain. he refuses to treat me with any types of pain killers now. i have been suffering for months and cant seem to find any doctors that believe PTPS exists. The pain has caused depression,anxiety as well as not being able to do the things i use to love doing. Every doctor i see looks at me as if i am making this long term pain up ect and thinks i am abusing drugs. I have never been on any type of pain killers untill my recent surgery. I believe it is the people who abuse drugs that makes us people who are actually in pain, suffer and cant get the doctors to believe that PTPS exists let alone do anything to prescribe pain medicine. Its sad that people who do abuse drugs,and are not in pain can get pain killers,but people like me as well as many others who do suffer from chronic pain and do not abuse drugs can not even get prescribed anything. These days they look at all young people and automatically assume they are drug seekers,drug abusers ect. It makes me so mad and upset that people ruin things and abuse drugs which in return makes it hard for us people who are actually in acute or chronic to obtain any type of medication to help with the main. Thats how i feel. I have to suffer day to day in chronic sever pain and can not even get treated by any doctor or pain clinic but yet people that abuse drugs get pills like they are candy.. Grrrr so upsetting and pi**es me off that we have to suffer all because of people who ruin it for others who actually suffer.. Anyone else agree with me.. Hopefully some day,some day soon i can get treated for my chronic pain as well as others who are actually suffering..


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