post thoracotomy pain

[hurtinginaz]

I had a thoracotomy on Dec. 20 to remove a tumor on the surface of my lung near my spine.  Luckily, the tumor was benign.  However, I'm still experiencing quite a bit of pain, especially near my shoulder blade and along the incision.  

Currently, I'm taking Ultram 50 mg every 6 hours during the day.  I'm scheduled to return to work a week from today, and I had hoped that I would be pain free by now.  I have a follow up appointment with my surgeon in mid March.  When I went to see him 2 weeks ago, he said some people have pain for a longer period of time than others and we need to treat my pain until it subsides.  That's when he gave me the perscription for Ultram.

I was wondering if anyone out there has had a thoracotomy and could let me know if it is atypical to have pain 6 weeks after surgery. I have read about post thoracotomy pain syndrome and I'm concerned that this is what I'm experiencing.  I sure hope it will get better because I can't imagine having to live with this pain for the rest of my life!  Any advice/information would be appreciated.  I'm especially interested in advice about long term pain management after a thoracotomy.  Thanks.

[dbpickus]

I had a thorocotomy 5 months ago to remove a cyst in my esophogus (benign) and after the intial two weeks of taking 12 percocets a day I was down to what I thought was manageable pain. Went back to work even though I was not 100% pain free thinking that getting up and moving would work out the pain. Well, 3 months later the pain is exactly the same as it was the day I returned to work. The more activity I do the worse the pain is. Lying down stops the pain, but I can't do that during the day. No OTC pain relievers help, nor muscle relaxers. I'm only 45 and want to get more active, but I'm finding it difficult due to the pain.

What type of pain is everyone having? I have 5 different kinds of pain in different areas and want to know what is common:
1. Aching pain in my back over my shoulder and around my shoulder blade
2. Zapping pain along my front (not where the scar is - the scar is on my back (like electric shocks).
3. Numbness under my breast.
4. Aching, dull pain on my side and around the front under my breast (except where it is numb)
5. Pain throughout my breast on the side of the thorocotomy.

[VFLady]

I have all that same pain, sharpness, numbness, all of it.

[VFLady]

I had a thorocotomy almost ten years ago, the second of two lung surgeries from Valley Fever complications.  The second time the surgeon went over the previous scar and later I developed scar tissue all around the nerve that was involved.  To this day I still have pain, it feels like a knife is in my back and other times like a vise around my chest, front and back.  I need to take pain meds all the time; nothing they tried ever helped to ease the pain.  The problem I have is the whole pain med thing going on and the docs have to really screen everyone anymore.  Because of the criminals out there we have to constantly try to make doctors believe we truly have pain.

[Tuckamore]

Sorry my dear, this is a very old thread. The original poster is no longer active. I see there have been a few posts the past year but no responses.

I am so sorry you are still experiencing pain. Were you given anything to control the pain? If not - and especially considering you're still having issues I would contact your surgeon or maybe your PCP. They may have suggestions or medications that could ease your discomfort.

You didn't say the reason for your lobectomy. I hope your prognosis is good. We do have a ling cancer forum - eve though you may not have that DX there may be members there that have undergone a similar surgery. I'm giving you the link in case you would like to post there also.

http://www.medhelp.org/forums/Lung-Cancer

I'm not certain how active that forum is - but take a look it you'd like. You are always welcome here. Often if you begin a new thread (Ask A Question) you'll obtain better visibility and more responses.

I wish you the best and hope you'll be able to find some relief. I'll look forward to seeing your new post/thread.

Take Care,
~Tuck

[tarantulaspun]

Had full out thoracotomy due to an abscess in my rt lung known as empyema. It started out as pnumonia. I was sent home on antibiotics but should have been made to stay in hospital. My condition got worse and was admitted and put on a pik line for strong antibiotics. Had a scope done then was admitted to another hospital several days later for the surgery. The tube drain site and surgical site were very painful weeks months a year after. I had many ct scans and was told it is scar tissue working itself out and or it is still healing it was a serious surgery wait it out. Now going into 3 years I am being told the same thing. For meds I take fentyenal patch 100 and dilaudid 2-4mg. The surgical pain is described as that numbing feeling with pain in the front rt rib cage area. Pain along the rt side of the back where the lung is. It is a  boring pain and worsens with lifting bending coughing ect. It is important to communicate your pain needs with your doctor and get proper meds prescribed so you can function in you daily life doings. It is also important to slowly get your upper body strength back. I have a first degree black belt in karate  and this surgery plus a recent MVA has set me back physically from what I used to be. Instead for my exercise needs I had installed an indoor swimspa and use low pressure to swim or simply get the body moving. Hope this is helpful

[forgetmenot04]

I had an upper right lobectomy 6 weeks ago and am still having dull pain in my incision and where the drain tube were, as well as sharp shooting pains in my right breast.  I'm surprised that the pain is still as intense after all these weeks.  I have days that the pain is very minimal and I'll think that it's finally healing but then the next day the pain is back.  I was given no instructions for therapy when I was discharged from the hospital, other than using a spirometer and blow up balloons to build up lung capacity.  

[forgetmenot04]

I had an upper right lobectomy 6 weeks ago and am still having dull pain in my incision and where the drain tube were, as well as sharp shooting pains in my right breast.  I am surprised that the pain is still as intense after all these weeks.  I have days that the pain is very minimal and I will think that it is finally healing but then the next day the pain is back.  I was given no instructions for therapy when I was discharged from the hospital, other than using a spirometer and blow up balloons to build up lung capacity.  

[bobbydurren]

im going on six months from massive lung infection they did the full thoracotomy on me  . I have been out of work and in tears of pure hell my pain persists .I cant seem to get my ability to move back my sleep patterns are completely off I don't hardly sleep I have panic attacks daily because I cant catch my breath I spent over a month in the hospital 5 chest tubes and two other procedures that I was awake for that they drove a suction tube into my ribs while I was awake to extract mass of **** and infection from me , which hurt like hell. they told me that there was no longer anything they could do for me pain wise so now I self medicate. with over the counter crap. I cant function normally I cant sleep normally I cant do anything . im in constant pain . I don't know what to do.

[swopie]

I read your comment regarding post-thoracotomy pain and, in particular, cramping from 2009. I have a twenty-one inch scar from a right thoracotomy done thirty eight years ago, and I still have severe cramps just about like those you described except that about one-third of the time when I get one on my right-back side where the scar is, it causes one directly opposite in my left-front side. After the surgery it happened maybe forty or fifty times a week. They are disabling cramps, and it takes a while for them to go away. My wife and kids used to make excuses for me when it happened around others. They make me look like I am having a heart attack. I used to cuss and fuss when they happened. But now, after so many years, I just kind of grin and bear them. My wife and kids just say, "He'll be OK in a few minutes." I was told I would be perfectly fine after the operation, good as new, won't even know I ever had an operation. Well, that sure didn't come about. Sorry I can't be more hopeful. I blamed myself for the pain. Don't do that. Go to a doctor and get help...

[AIYSHA1]

i had a tumor removed between my heart and lung via thoracotomy/left lung deflation in may 2013.  here it is about 3 1/2 later a i still have some numbness under my left breast.  i did have some nerve regeneration pain that was a nuisance for a few weeks but my pain was at a minimum.  at this point i have some sensitivity on the inside and my incision (chest tube keloids included) bother me as they sit right where my bra is.  overall it was not bad at all.

[rickmay]

Hey there. I had a schwannoma removed from my chest cavityas well via open thoractomy, apparently very rare. One month is still extremely early in your recovery, keep your head up:) Numbness should get much better if you have any questions or anything you can reach me at ***@****.

[Quiltpecan]

I'm having pain very similar to what you describe in your reply to this medical issue.  I had a nerve tumor removed from my chest cavity.  They went through the lung area by deflating the lung.  I too have the numbness, sensitivity and pain in my upper chest area on the side of the surgery.  I am still just one month out of surgery but I'm worried the pain and sensitivity I'm feeling is going to be my new "normal."  Can you tell me how long it took for these things to improve or if they improved any?  Thank you.  

[mycrazypain]

At 45, I had heart thoracotomy surgery after heart robotic surgery failed to close PFO on 8/24/12.  I was out of wk for 6-mos and just returned back.  I still have everyday, almost all day what my surgeon calls healing pains but I feel about 4 to 5 different pains.  There's one that definitely has to do with nerves, there's another one on the back of my shoulder and over shoulder blade, pain along side of incision under my breat, the pain all over my breast.   At times its so strong that it paralyzed me. I've never taken any narcotics.  I used to take Tramadol and Motrin, which doesnt totally gets rid of pain but helps make it better. With that said snd in reading the posts I guess I still have a long way to go.

[Yoshimano]

Hi man. Your story is so easy to relate to for me! Same conditions when I was diagnosed a spontaneous pneumothorax, though I did nothing for it. Now after almost two years, I still feel pain near my spine, with some levels hardly sufferable. I never saw any pain specialist. Do yo uthink that would help in any way?

Thanks for sharing your story.
Sébastien

[DeeBPickus]

As an FYI, it has been 5 years since my surgery and I still have these pains. Have not gotten any better, sometimes gets worse, but subsides (I blame this on the weather). Have not seen a pain management doctor because I'm afraid they will say I'm making it up and I don't want to spend money on stuff that doesn't work. The worst pain, however is the itching from the scar. I used an ointment on it (very difficult to apply), had kenalog shots and laser treatments. But still the itching is so bad I have to hack at it with a spaghetti spoon until it bleeds.

I actually now regret having this done as the cyst was benign. I wish I would have looked into other possible solutions as this drastic surgery has left me with much pain and damage.

[bob24655]

No. I came to that conclusion after four and a half years. This is the type of pain that drives you to madness. Pain killers work sometimes but then you are labelled a drug addict. I have been fighting with my Doctor for four and a half years. He is convinced I like the drugs and the pain is secondary. Needless to say that is a dafamatory comment and if I could deal with him with my fist I would. Did I mention that getting over anger is hard. So is revenge. So is knowing that the pain isn't leaving. I don't think the medical field has yet found a way to do less damage when it comes t this kind of surgery. I do know that my pain came from the Doctor pulling a tube out of me that had become attached on the inside. The pain was undescribable and should have never happened. Igonorance of a Doctor not knowing to loosen a tube before removal (and having no assistant present) has cost me the better part of almost five years. Hard plastic tubes being used are ridiculous and softer tubes made out of silicone with a reinforced inner shell should be the norm to lessen or alleviate inner damage. For anyone who goes through this make sure the Doctor specializes in what they do. I had an idiot who didn't. To this day I would like to kick his *** too for his negligent actions. I wish I had brighter news but that is my story. I have tired just about everything. I wish all of you the best of luck.

[peppy25]

I just had a combination thoracotomy/thorasopy done a month ago and 'm still in pain.  I had four chest tubes and they were all on my left side.  I have numbness along my stomach and pain under my left breast almost at the breast bone.  I also have pain at the incision sites which have not totallly healed up.  Does this ever end?

[wendyro]

I am a 24 year old female that was recently diagnosed with osteosarcoma, a (children's) bone cancer that occasionally pops up in adults. I have had extensive leg surgery and ended up needing a thoracotomy of my left lung because they discovered an 8 mm nodule in my lung and didn't know what to do with it since it didn't meet protocol (1 cm) for it to be cancerous and they were unsure whether or not to remove it, but overall my doctor didn't want it there. I had a thoracotomy (9 days prior to my extensive limb salvage surgery on my leg) and they found 2 additional small lesions and removed them. Turns out the 8 mm nodule was cancerous, so my cancer spread to the lung(s). I had a chest tube for a few days and had a pain med pump for after the surgery. Not sure what medications they used that time besides the Ativan to calm my body down. I was only in the hospital for 4 days, then I just laid around recovering at home. I just recently had my right lung operated on (another thoracotomy), but this time was a more exploratory surgery. After surgery I had a sharp, paralyzing pain occur one day and it shocked me/scared me so badly. My ribs and incision got very tight and I felt like my body was burning inside. I want to mention that I have a VERY high tolerance for pain and I will tell you...this is some of the WORST pain I've ever experienced. It feels like your incision is on fire inside and it goes all the way around to the front of your rib cage. I have to take my Dilaudid pill(s) and Ativan for it to help and I noticed if you try and relax your body it will help the pain go away faster. We were told by the surgeon to put heat on it, I find that it helps the pain, but so does ice. I'm not sure when this pain will go away, but I will say that I never experienced it with my first thoracotomy. I hope the information in here will be able to help someone, somewhere...

[stevn2685]

i am 26 i got stabbed in my right lung when i was 20 i have deep pain in my scar in my shoulder and in the muscle in my stomach ive been to the doctor and all they do is run xrays and havent had pain medicine since i left the hospital they tell me nothin is wrong i knew it had to b somethin deeper

[207Gypsy602]

I had a Radical Thoracotomy May of 2000 in AZ. They ran though a list of what the diagnosis was daily once I was out of the hospital and told I had 6  months to live.
I have lived since then in pain like I would never have expected anyone to have to live with. I have tried almost everything out there, which most just makes a person high, and not care about pain, not reduce or remove it.
The medical Doctors tend to not know what to do, and then of course think we are crazy because they can not figure it out.
I can not even fathom that I am still alive today, how I smile, how I can enjoy a moment, when all my dreams, thoughts and desires were washed away so long ago. Each day is a struggle to remain as close to "normal" as everyone else so not to be labeled.
I was lucky to be born with a innate outlook that possibly tomorrow it will be better, just make it though this moment.  Meditation, creative thought's, heat, stretching, my inversion table, and my DO that does adjustment and acupuncture away from my pain so the rest of my body does not become reactionary are all what keeps me going, along with a few emergency medications, and my spouse (who I can not understand stands by me).  
I tend to push, and not baby my body, and and have said too many times to count, that a "couch potato" type person would love this, but I dislike being still. Another not so healthy statement was, " it would have been better to let me die, than to live like this".
Now let me say that I have changed as a person. I'm more calm, more wise, more patient, more understanding, and more humbled at life. If there is one thing that has came out of this, is that others have learned from me, and seen me go though what I do daily, and it has caused changes in them.
If you too suffer, as I see so many of those above do too, I send you energy with no sympathy, but understanding, and I say to try to do the best you can. I hope you can find at least on "medical" type person that can in some way validate you, and hopefully more.
Lastly Dr. Oz did a show recently on this subject, (http://www.doctoroz.com/videos/your-chronic-pain-disease-pt-1).
Peace!

[alfie134]

I had traumatic pneumothorax in jan 2010, empyema, pnuemonia, sepsis, kidney failure, lung abcess and received 98% oxygen on ventilator for 14 days, I was in ICU for 4 weeks and 1 week in stepdown, transferred to Glenfield in Leicester for thoracotomy, nearly 2 years later am still having ultrasound on wound which is helping, the whole experience of ICU still plays havoc!! the fact of being told 'you nearly died' is really difficult, but am glad I am still here! I have the same pain as most, numbness under the breast, stiffness in the shoulder, tightness around wound area! Lucky to be here but have decided even with physio exercises and ultrasound the pain will always be there, no complaints though as my life was saved, more time with the grandchildren!!

[firemedic330]

The doctors don't seem to really understand the pain of a thoracotomy - unless they've had one themselves.  I'm now 3 years 4 months post thoracotomy & I can tell you that I feel some degree of discomfort every day - sometimes downright pain.  I work out and work through it, and take Vicodin only when absolutely necessary (maybe 5 a month). Everyone has their own level of pain tolerance.  If your doctor won't listen to you, find one that will.

[Tuckamore]

Hello Officeralice,

The original post is over four years old. While we Welcome you to the Pain Management Forum I encourage you to please begin your own post (Question) instead of tacking it on to someone else's.

You will obtain more responses with an original post.

Thank You,
~Tuck

[Officeralice]

I had a Thoracotomy in December 2004 for a coarctation of the Aorta repair (was a 32 year old female with a 12 week old baby). I was not warned about the level of pain that I would experience. Althougth the pain subsided somewhat after about 12 weeks, I have had a constant nagging ache nearly every day since and my lft breast is still partially numb. Occassionally I get spasms and have to take two 500mg of paracetamol. I work full time, run a house, and have a husband and nearly seven year old daughter. I think the pain is a small price to pay for being alive. However, make no mistake this surgery and its aftereffects are horrendous and unless  you have been through this, the level of pain cannot be understood. At every check up I mention it to my consultant but he does not really acknowledge the issue. I hope all the people who have previously posted are feeling better.

[TTsGirl0810]

I had surgery September 2010 and I am still having a lot of problems breathing.  There is a lot of pain in my right side, and it hurts to lay down or take deep breaths.  There are times that it hurts worse than other, but when it hurts it just comes out of no where.  I have tried to go to the doctors for this, but they say that my oxygen level is good so that must mean I am not having problems breathing.  I know what I am feeling but it is hard to get the doctors to listen to me. By this sounds of everything here, it sounds like I will have pain for the rest of my life.  I am only 29 years old and dont want to have to deal with this forever.  

[chaotic13]

It's now been a couple months since my surgery (3/8/11), the only improvement has been the area around my right chest into my armpit. It's not completely gone but has gotten much better. The nausea has gotten worse, I now have been vomiting instead of just the constant nausea. I've been losing weight, from the nausea/vomiting, and eating more than a very small amount makes the pain in my side much worse. I am still being told that they don't have all the results in. I have an appointment with my pulmonologist next week that was moved from yesterday, because all the pathology results weren't in. I'm trying to be hopeful that I will actually know what is going on next week. I also have an appointment coming up with a pain specialist to see what can be done to help with the nerve pain. I've been trying to be more active, but it's not easy with all this and then the other problems I have: three herniated disks, degenerative disk disease in my neck, and a couple other spinal issues. I hope everyone is doing well.

[VFLady]

Well, here I am 3 years later and still dealing with the pain.  I guess I'm stuck with it.  I went to physical therapy for several weeks, which helped to strengthen the muscles around the incision area, but the pain is still there.  I have a lot of scar tissue which has wrapped itself around the nerves in that area and the pain does not change.  It depresses me sometimes as I cannot be as active as I was in the past which has caused weight gain which does not help at all.  I hope everyone is doing OK.