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.
I had a thoracotomy 2 years ago this May and still have significant pain. I have been seeing a pain management specialist for 1.5 years and have better control now. Narcotics have not helped. Neurontin and Lidoderm patch helped the most. Acupuncture did not help. I am back to work but in the past 3 months I have missed about 10 days due to pain. You mentioned that you were on Ultram at 6 weeks after surgery. I was taking oral morphine and a morphine patch for almost 6 months after surgery so perhaps you will have less pain soon. I hope this information helps. Good luck.
I had a thoracotomy 4/06 and I have started to have pain in the last 2-3 month. I take Darvocet which seems to help some, but I am concerned about long term use. I have had recent xray, bone scans and CT scan and there are no signs of cancer. Today is the first I am hearing of the syndrome. I wish the physicians would have mentioned it before.
i had a thorocotomy 5 years ago and still suffer significant pain down my left side. i it is probably due to nerve damage. i have been out of work since and feel at this stage that this pain will not resolve itself. is there anyone out there that suffers the same after about the same time lapse? i would be grateful for any feedback. thanks!
I had a 10th rib thoroco-abdominal approach, discectomy- vertebrectomy, spinal fusion 5 years ago. I have been diagnosed with intercostal neuritis. Also unable to work. The pain doesn't seem to be in a hurry to resolve itself. I keep thinking physical therapy, try to be active, all the things that fixed little hurts in the old days, will help. They don't seem to.
I try to be a bit careful. Too active and I have begun to bring on other problems I don't need.
Have tried yoga, (definite no from my body and doctor) accupunture helps in the short run. Gentle PT. Right now having more aggressive Pt and hurting. Wondering if I am doing the right thing or not. Seems a hard call for everyone.
Really tired of pain every day.
love to hear from you. Have you had success with anything? Nicest thing I've tried was chi-gong. I did half of it in a chair. Kinda embarrassing. Used to be quite active.
hi there i have had 2 thoracotomies plus other ops on my stomach..i am 49yrs old male..my 1st op was in 1990 and the 2nd was in 1996,i am still in pain from the op and have been taking morphine for the pain for the last 8 yrs..i am on 400mg morphine a day which is a large dose but it has allowed me to have some quality of life...i had to fight all the way to get this pain relief but got there in the end..proof it is working for me is the fact that i was attending hospital at least twice monthly but dont have to attend now as i am in control of my pain..forget being addicted and all the other arguements against it,if you have real pain it needs sorting ...i was called a liar when said still in pain but this wasnt the case...i was in hell and no one knew it but myself...praise to morphine it as given me some kind of life again..steve g...mansfield notts..
i had surgey in july o7, they swore i had cancer, and it was crucial, i had my left side done , no one told me about the possibility of pain for ever till now.....but first they acted like i was crazy....imagining this terrible pain.....well the only good thing out of it i think is it wasn't cancer but histoplasma, so they say, i wonder daily, and i haven't been able to go back to work ,and won't be able too, so that sucks i thought i woulda been back to work, i'm young and had my whole life ahead of me.....i struggle daily with it, and have been on oycodone, high dosages every since surgery, i go to physical threapy 2x's a week, i try not to focus on the pain, i want my life back.... so to everyone before me ,i feel what you are going thru ,we all must stay strong, this is very real....char in ohio...
One day perfect health - I am 22 yr old male, next day spontaneous pneumothorax....go to ER get a chest tube that fails, get another chest tube after being admitted, lung expands to normal, health deteriorates, a week goes by...i am in ICU barely hanging on before they finally figure out a staph infection given to me by one of the chest tubes has been eating away at my chest wall and lung....but due to it being in an empyema normal antibiotics couldnt reach it and a emergency thoracotomy had to be done....5 chest tubes and a thoracotomy later I left the hospital after 3 weeks been on every pain medicine since....I suffer from post-thoracotomy pain syndrome as well!
To Vonni: its been 2 years since my surgery I was athletic, non-smoker non-drinker....best shape of my life never a health problem before, also have a high tolerance for pain and I still suffer from pain at high levels and see pain specialists all the time and am on a number of pain meds to get my pain down to a managable level. I must say I was compelled to see others out there going through similar issues with this procedure...as they dont really mention that it is rather common to have this with the thoracotomy....hang in there all!
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.
Welcome to my world...it's not a very good world to be in but ...yeah read my above post in this thread to get a brief idea where I am coming from with the origin on my thoracotomy...anyways...as its been almost 2 years since mine and im 23 now....22 when it happened...and i am still in a lot of pain. Good news- it is nothing like it was 2 weeks post surgery nor is it close to where it was 3 months out. Obviously everyone is different but if youd like to compare to me here goes...as a note I seem to have a high tolerance for pain...
2 weeks out - Could barely move in so much pain. Tingling numbing pain throughout my chest and back. The worst feeling was someone simply running finger nails lightly down my chest (immense pain). (medicated with oxycodone ER and percocet same time medium doses for 1 month), hurt to wear a shirt or seatbelt, couldnt sleep from pain, etc. (not working but was a ft college student)
3 months out - Had been seeing a pain mgmt doctor for 2 months at this point...had a procedure called Radiofrequency Ablation of Intercostal Nerves....This made me feel about 30% reduction in pain....
1 year out - Had second Radiofrequency surgery and only about 10% reduction in pain....(meds included lidocane patch, lyrica (high dosages), celbrex)
2 years out - TIME has resolved about another 30% of the pain...leaving about 30% of the original pain I had....(meds include ultram er, ultracet and work very well for me)
As far as what type of pain still remains?
The tingling numbing pain went away after my procedure....everything else remains just at lower levels....Just looking at your list...
1. Yes definitely have this still...
2. I think this is part of the numbing pain I had that went away...scar on back as well...however most pain in front especially in the beginning...
3. gone now but def. had it back then
4. oh yeah still got this.
5. yep yep still got this...
Really cant think of any additional you pretty much covered it I will say though sleeping or "laying down" as you said didnt feel good at all... left side (surgery side) couldnt ever do, right side felt okay for set amount of time, back was mildly okay. The best position for me was sitting up hunched over shoulders pinched inwards hugging a pillow....
Obviously this was just me and we are two very different people but you seemed curious....and I dont blame you.
My best advice find a GOOD pain management specialist in your area. Be open to trying what they suggest (not just meds). Ive tried TENS, radiofrequency, accupuncture, physical therapy, chiropractor, and meds...I hate meds and am willing to do all the other **** to lower my meds at all costs... Good luck on finding what works for you.
I also had a thoracotomy after 5 or so pneumothoraces - also after a VATS pleurodesis procedure which was surprisingly worse from which to recover than the pleurectomy/thoracotomy. In my case, I found out I have a rare, uncureable lung disease (Lymphangioleiomyomatosis) which caused it - unfortunately, the blebs in my lung continue to pop and cause periodic small lung collapses. I try to just sit at home and see if they pass after the cumulative months in the hospital. I had the procedure on my left side and probably will have to eventually have it on my right though they are trying to avoid that in case of lung transplantation in the future.
Anyway, my thoracotomy was in March 2006 and I am still in pain. Between all of the various chest tubes (lost count of how many) and the two surgeries, I am certain there is nerve damage from all of the cutting, not to mention the subsequent small lung collapses. I was on morphine & dilaudid in the hospital and oxycontin & percocet afterwards. I had to taper off of it over time because I could not go to work all drugged up. I do suffer through every day and try to deal with lidoderm patches and other OTC analgesics such as ActivOn Backage, Salonpas Hot and Johnsons Back Plaster. I've also tried Advil, Percogesic, Doan's, etc. and get temporary relief from all of these. Deep tissue massage helped some but makes you sore for days afterward. I am going to try to find a good pain doctor to check out a couple of options....
Has anyone tried nerve blocks for this? Do those just numb the area or do they also affect your mind? Have they made you gain weight? Surgical options? I've heard of trying certain prescription medicines not all directly considered painkillers such as Neurontin, Dopamax/Topamax, Cymbalta, Lyrica, Keppra, Toradol & Celebrex that might help....all seem to have side effects worse than the pain itself when you search on the internet!
Either way, it's starting to hurt so bad I can't think at work, but if I don't work I don't have insurance to pay for all of this stuff...I
If someone's still reading this thread...
I had my thoracotomy on 05/02/08 - removal of left upper lobe due Carcinoid - and feel like maybe I'm not taking "enough" drugs to feel better? Ultram 100mg per 24hrs as needed, Norco 1 at night, rest of the day attempt to control with Advil. I still have pain 24/7, but am scared to death of being addicted!
I exercise daily in attempt to get my lung capacity back up - treadmill and stationary bike for starters, and last week added rowing machine.
I don't see much in the posts above about exercise - are you all still having the pain even with working out? How is your lung capacity?
Any updates are appreciated. Thx.
I would start a new thread, post your question. I am sorry but I know nothing about your medical issues other than pain!!! People who have true pain such as you do not become addicted, at least according to all the physicians I have spoke with AND more importantly is your quality of life. There is never a good reason to live in pain. I wish you the best, take care and please post your question on a new thread so you will get more responses. We have a lot of memebers that will offer you some good information. Tuck
My last post was 3 months ago when I was concerned about pain meds. And to be honest, I'm still tempted to take them daily. But I don't.
I had thoracotomy in May 2008. 10" incision, 2 chest tubes, 1/2 lung removal, the whole 9 yards. It was carcinoid cancer. I'm 48, female.
Yeah - I still have pain - every day - and my left breast is still numb - but I think we all have to decide how much we're willing to deal with and do we let it get us down. Or do we rise above it?
I'm a firefighter & made it back on the engine after 4 months. I worked my butt off and it hurt like heck! But the point is, if I can do this, ANYONE can.
Or...we can say poor me it hurts I'll take some drugs "just one more day, I'll stop tomorrow..." - then we REALLY F--- ourselves up with narcotics, withdrawal, etc - (I nearly went that way myself). Or we can choose to get OVER it and BEAT the pain.
What really helped me was weight training and the rowing machine. The hardest part was getting started and warming up those muscles! Also heating pad at the end of a long day is wonderful.
Please don't think me cruel - I understand true pain! - and I deal with people in pain every day at one of my other jobs - people who struggle with degenerative diseases, MS etc - some refuse to let it get them down and live full lives - others cry and go on public aid. Same disease, different reactions.
My opinion is that so much is in our head and heart. We have the power to control our destiny.
Pain sux - but we could be on a slab with a tag on our toe - that sux worse.
I wish you all luck and willpower!
Had my thoracotomy Dec 3rd 2008. Fortunately, all findings benign.
I returned to work 2 weeks later altho' only for 2-3 hours/day. Today is the 22nd, and I am frustrated as I am still in discomfort. Darvacet gets me going in the am, but at this point, Tylenol would probably work as well. I am not in pain, but I am in discomfort. Beneath my left breast hurts the most, I feel like I have a belt synced tightly across my rib, and all internal organs are floating back and forth freely. Lying in bed is probably the most painful, If I lay on my back, it feels like my organs are pushing up through my chest wall, if I lay on my side it feels like the organs are dangling and swinging sideways....
Can anyone relate...and does this discomfort eventually go away?
I am very sorry you are having pain. Darvocet is a very week narcotic and I am not surprised it is not effective. If you are very uncomfortable I would discuss this with your surgeon and hopefully he will prescribe something a bit stronger.have pain
This is an old thread. I suggest you begin a new one.
I understand what you feel, I have discomfort also. My doctor says it will take at least 2 years to fully heal. Remember: we got filet'd (sp?) like a trout.
Discomfort is OK! Pain *****.
Please be careful with Darvocet - and any other narcotics! - weak or not. They are so addicting, and before you know it you need them just because you need them - not necessarily for the pain.
Best of luck to you.
I just found this site and would like to share my experience. I had bi-lateral thoracotomy's for pleural abrasion in 1993 (at 31) after failed VAS. I had horrible pain for a couple of years after the surgeries. 15 years later I still hurt and feel it everyday of my life. Especially right near the scars where they spread and fractured the ribs. I saw neurologist for pain management at first. He advised nerve blocks which my pulmonary guy was against. In the nineties you did not here of post thoracotomy syndrome. Now I read plenty about it, and am here to tell you it definately exist. My pain is mild to moderate and goes up and down. I control it for the most part with anti-depressants(they work to some degree because I can tell a big difference when I go off of them) and have learned tolerance over the years. As frustrated as I get, I am glad to be alive and have not had another pneumothorax that I have had to be tubed for. I wish everyone the best that is experiencing an issue such as this.
One thing else. As I am getting older I am now progressing with COPD with the bullous disease. I can tell that my breathing is more restricted. Best of luck to all!
I was diagnosed with kidney cancer in 04/04.They got it all they said. In Oct 06 the supposed chief did thoracotomy left side but instead his residents severely broke two ribs. This was to be a rib sparing/muscle sparing procedure for a mass in left lung they thought was my renal cell cancer moved to left lung. It was benign thank goodness. I kept having pain they told me I was just wanting meds and not hurting that bad after 6 weeks of prescribing Lortab 10 which took the edge off the pain. By June they thought cancer spread to abdomen I could not get on OR table without screaming of pain even with pain meds. The anesthesiologist came in and lookded at x-rays and said my gosh they have two ribs that look like stairs broken so severely. Got me very sedated to lie me down for procedure and once again this was benign. By October with help from a great Orthopedic Surgeon - he convinced another thoracic surgeon that he had to go in and help do something with those ribs. They had already done many nerve blocks telling me it was just nerve pain but of course it wasnot and is not. This surgeon did his best and took 5 1/2 inches off of rib 5 and 8 1/2 inches off of rib 6.This was done 10/07. He thought he cleared my shoulder blade in back so that I could now loft my left arm without it catching and causing more major pain. It did not. He thinks he can possibly go back in and remove the rest of those two ribs and put me in less pain but at this point I am not letting anyone go in unless they would like to rebuild my ribcage if possible. I am a mom 49 yrs old with 16 yr old twins and want to live life with husband and kids not stayed medicated but I have to take a high dose of meds daily still to have any life at all. My list is as follows: Lortab 10 - 4X daily, Oxycodone 80mg ER - 3X daily, Dilaudid 4mg - 3X daily (for breakthrough pain and it does break through often) unless I am still. To sleep Ambien 12.5 CR. If anyone has any ideas of who to speak with about rib reconstruction I have been told that patients with post thoracotomy pain that have ribs damaged and removed that a possible reconstruction might help. I have large hole in my back by my shoulder blade and posture is also a big deal. Immediately after first thoracotomy I learned I could no longer sleep in regular bed. Had to buy a tempurpedic that does help with the nerve pain and nerve damage that you have post surgery. I am afraid that too much damage has been done to get out of this hole. I pray for all patients and every person that has to deal with chronic pain. BlueEyes1022
Hi all, glad to find some people out there going thru what I am, as opposed to professionals. On 1/7/09 I had my 2nd Thoracotomy (1st one 2002 during cardiac arrest) for cardiac procedure. Did well post-op, had epidural which was wonderful/w/Dilauded for break thru pain(allergic to Codein/Percocet). I was doing well (or so I thought) 3 weeks out down to 2 dilauded a day/w Motrin & on Neurontin for some nerve damage from 1st Emergent Thoracotomy. Now I find as I'm moving more I need more pain med/both VNA nurse/and ER-which I ended up in feel I'm undermedicating myself & I finally agree as I'm a bear if I only take 1-2 2mg/Dilauded a day. My question...............how long should I expect to need pain med for?? Most of my pain is under my left breast (left Thoracotomy)-although the area is really numb as well. Had no pre-op teaching, which is what I think is the problem because I didn't/don't know what to expect & what is normal. Any thoughts out there would be appreciated.
At age 44, I was diagnosed with thymic carcinoma on 9/11/01-very bad day. After several courses of miracle chemo, my inoperable tumor became operable and I was scheduled for a sternotomy on 1/7/02. By the end of the day, I not only had the sternotomy but also an unscheduled 12 inch thoracotomy incision on the left side of my back. After 5 weeks of percocet followed by 3 1/2 months of darvocet, I stopped my daily pain medication. A dull pain persisted at the rib right under my left breast. I had several consultations with my surgeon (a genius) and pain specialists. I tried 1) neurontin-made me groggy; 2) lidoderm-no effect; 3) nerve block-took one shot...pain was worse before it returned to status quo...did not return for further injections; 4) consultation to consider cryo-therapy which would essentially permanently freeze the nerve that was causing the pain...when I asked the doctor whether he would recommend the cryo-therapy if I was his wife, he observed that I was "so darn functional without it" that he did not know. That's when I backed off and accepted my pain. Yes, it is uncomfortable at times, especially after a long day on my feet-it is a relief to lie down in bed at night. I have not worn a real bra in over 7 years...just a soft elastic "crop" top (Barely There brand for the ladies)-an underwire bra is like torture. But I can play golf, use the elliptical treadmill (2.5 miles in less than 30 minutes-pretty good for a paralyzed left-side diaphragm and missing part of my left lung), swing a tennis racket, maintain my home and yard, etc. After I got over the idea of having a dull, lingering chronic pain, my attitude improved. And a positive mind set is the most important analgesic of all. And I am still cancer free after 7 years. PS - Kudos to firemedic330.
I have found that a NUBRA - Ultralite bra is absolutely wonderful. I cannot wear a bra either. This BRA is a stick on bra. I am 49 yrs myself. I would never have thought I would wear a stick on bra at my age with teenagers I am a B cup - but this one clips together in front to give you clevage, or more clevage. This way you do not have the pain that you get with anything on your side even if it is a soft bra. Please try this I think you will love it. You can get them at Dillards for $32 or go to Steinmart and get them for $18 - that is what I did. Let me know how you like it. I would almost be a spokesperson for them but I would not want to show my scar on my side and back. My 1st thoracotomy was 10/06 then they tried to fix what they screwed up 10/087 (another surgeon). You can read my post to learn more of what I went through. I find it terrible that no one tells us about what can happen afterwards. If it were not often that would be one thing but with as many folks as I have seen having major problems with BIG chronic pain, wow. Best of luck to you. Blueeyes1022
I am 45 years old and had a thoracotomy when I was 9 years old to remove a tumor in my lung which was pressing on my esophagus. To this day - over 36 years later, I still feel severe pain - like a knife is stabbing me in the back along my incision site - but only when my asthma acts up from fragrances. I cannot wear a bra during these painful periods. It is extremely painful for me to go to work around certain co-workers who insist on wearing fragrances despite knowing that I have this problem.
I had a thorocotomy in April 1997 at age 25 and in my last year of grad school. I was having some trouble breathing when lying flat and x-rays and subsequent CT scan showed a large mass in my chest pressing on my trachea. I had student insurance and just went to the thoracic surgeon that I was sent to by my doctor at the student health center. It turned out to be a benign parathyroid cyst (13 x 9 cm). It, along with the parathyroid, was removed. Reading these posts, I can relate too many and I feel very fortunate. I have been having pain lately which led me to searching about thorocotomy pain and found this site.
Immediately after the surgery I vividly remember the feeling of a belt synched tightly across my ribs, under my breasts, like barefoottrader posted. This went away. I didn’t feel like my organs were floating, but I had this weird feeling like I felt like something was dripping down my side, like my wound was bleeding and several times I would jump up and look to see if I was bleeding, I wasn’t. It was really weird, the doctor said it was a nerve thing. For a long time, I walked around with a pillow, folded up sweatshirt, etc. pressed to my ribs. After that phase, and sometimes these days, I walked with my hand on my hip, in order to stretch out my ribs. I felt I had breathing problems too, like I wasn’t getting enough air, but they tested me and said it was fine. I sometimes still get this feeling. I think it may be psychological/anxiety related.
My right vocal chord was left paralyzed after the surgery. I did 6 months of speech therapy to learn how to finish sentences and swallow. Since then, my left vocal chord has moved past mid line to compensate, but my voice is still soft and I get fatigued and sore if I talk too much. It is almost impossible for me have a conversation in a loud restaurant.
I still experience pain on the incision that is below my breast. My rib cage, below my breast to above my waist is still numb. I cannot touch my right breast at all! Can’t even imagine, just thinking about it makes me feel sick because of the pain it induces. I am able to wear a bra and sports bra though. I guess when there is uniform pressure on it, it is ok.
I had and still have pain in my ribs. I went to the doctor several times for rib pain after the surgery, but they never found anything, so I just gave up on that and it is not as bad anymore. My ribs still get “stuck” if I bend a certain way, cough or sneeze a certain way. By stuck, I mean very bad pain and sometimes it spasms. I just have to freeze until it goes away. My good friend knows about this and sometimes happens when I am on the phone with him and I yell “ribs, ribs, ribs” and he knows what is going on, because I just have to wait it out until it goes away. This has gotten a lot better though. I remember several years ago I was driving and sneezed and got “stuck” and the pain was just excruciating and I had to pull over to the side of the road and recover. It goes away pretty quickly and sometimes I just have to stretch it out; however, a lingering dull pain from those episodes can last a few days. Again, they are not as frequent, or excruciating as they used to be, but do still happen once in awhile (today in fact!). I also experience aching, dull pain on my side and around the front under my breast (except where it is numb) and pain throughout my breast on the side of the thorocotomy just like dbpickus.
I still have at least a dull pain every day in my ribs and breast as well as the numbness, but am just used to it really. I even sometimes feel the dripping sensation. I don’t take any medications or anything. I was given Vicodin immediately after the surgery. I can’t remember how long I took it, maybe a couple of months. I exercise 6 days a week, cardio 3 days a week and weights, strength training 3 days a week. A good physical therapist can design a program for you.
Positive news since my last post in Dec 08.. Unsuspecting of any significant post operative pain from my Thoracotomy surgery in Dec, my follow up appointment with my surgeon comforted me with the fact it would/should take 3-6 months to heal the ribs! Little did I know going in! Now I feel normal, knowing the pain is anticipated!
It has been 3 months now, and I can almost lean on the surgery side without breathtaking pain! Am I ready to strap on my bra ?....not quite yet!
I have not taken any pain meds for over 6 weeks now...a couple of Tylenol have been sufficient.
I hope this is encouraging news for others!
Thoracotomy Anne Dec 08!
Good news barefoottrader. Yes, it took a while before I could wear a bra and definitely to lean on the surgery side. My doctor weaned me off Vicodin with Advil, but then I started to throw up from the Advil! So, Tylenol is probably a better idea. I dont' remember being told about the post-surgery pain either. I may have just been too focused on the fact that I was 25 and having an operation. Someone who fainted when I got my ears pierced and has to lay down to get a blood test. I guess I wasn't focusing on the after part, just on getting through it.
I think the worst part was that no one told me what to expect, and that seems to be a trend here.
Occupational Health actually had to clear me bck for my job - my surgeon wouldn't do it - and the Occ Health doctor gave me more info than my surgeon! He says minimum 2 years to completely heal, and expect to feel at least discomfort for lifetime.
Eme112, you are right - a good physical therapist can be a lifesaver! Exercise and stay strong.
Good luck everyone!
Post-surgical pain outcomes are notoriously hard to get hold of, especially for specific procedures such as thoractomy. So I post this here in the hope it might be of some use to someone, at least to wave as evidence that they aren't mad:
Ian Gilron et al: Neuropathic pain: a practical guide for the clinician (Review), Canadian Medical Association Journal (CMAJ), Aug 1 2006, 175(3), pp265--275. The bottom of table on page 268 lists thoracotomy post-surgical pain prevalance at 11--57%, and gives a further reference. Gilron et al is available for free at CMAJ website.
Post surgical chronic pain from thoracotomy may be as high as 50%, according to the Canadian experience. If a doctor or surgeon hasn't at least advised patients of this risk prior to surgery then they are letting the patient down, IMO.
Good info in article referended above. Thank you Otis!
Took a while to read, but the bottom line seems to be: "Golly we just don't really know what's a good fix for most of the people" There are so many drugs & non-drug options listed.
I know I'm not losing my mind about the pain. It is real!
Speaking only for myself: I'm stubborn and refuse to let it get me down.
I do my job without much in the way of prescription meds. Advil 600-800mg usually does it for me. But there is not one day goes by that I don't have pain or discomfort of some sort.
And I still can't wear a bra! Compression tops work for me. (Lucky for me I guess, my butt is bigger than my boobs, smile)
I can relate. I had two thoracotomies a year ago; one to remove a nodule caused from Valley Fever which they thought could be cancer, and the second to repair a fistula caused from the Valley Fever fungus still in my lung which became activated and collapsed my lung. I still have unbelievable pain a year later and also go to a pain specialist. They are trying several meds, although Percocet works OK along with a nerve med. Lyrica put on weight and gave me a headache so we need to look for something else. I also have the "frozen breast" and different types of pain all the time. I may have this a long time, and it's so frustrating. I wonder if just opening up my lung in the first place activated the Valley Fever fungus as I must always stay on anti-fungal meds which have a list of side effects of their own. I'm glad I found this site and I don't feel alone with this pain!!
I just had my thorocotomy on March 11th, 2009. The surgery was needed after a 1.3 cm mass was found in the apex of my left lung. Today is my 1st day back to work, after being home almost a month. While the pain has lessened, I am still VERY uncomfortable. Muscles feel like they are burning, left pectoral area is numb, and I find my self "compensating" when I sit in a chair. Walking feels like each step of my left foot causes an immediate increase in the discomfort level of my left side. I was on Oxycodone 20 mg and Oxycontinin 20mg. At my 2 week post surgery visit, asked the Dr. to give me something that did not make me as groggy. He Rx'd Tylenol 3 w/ codene. They dont even take the edge off!I've tried 800mg Ibuprofin, they make no differance. Pre surgery I ran 3-5 miles a day, and did the resistance machines at the gym when done with the run. Now a cup off coffee in my left hand feels like a ton, and I fear i will drop it! After reading all the posts, I am depressed thinking it may be 2 yrs or possibly never before the pain and discomfort subsides. I am a voluenteer Paramedic and there is no way I can carry the gear we use. This *****!
I understand completely how you feel!
It's almost a year since my surgery, and I still have at lease some level of discomfort each & every day.
Really & truly what helped most was exercises - treadmill and rowing machine - getting strong again and building up my capacity.
I was back teaching EMS after 6 weeks, but it took 4 full months to get back into the firehouse.
It was NOT easy! and still isn't. But I figgure if a fat ol' broad like me (49) could make it back onto "Big Red" fire engine and ambulance, anyone can.
NTNG: my surgeon also wanted me to believe the pain is in my head, but we all know it's real.
Some of us can deal with it better (or are more stubborn?) than others.
I used Vicodin for a couple months, but didn't like the long term risks. I now use it ONLY when I cannot relieve the pain enough to sleep with Advil 800mg. I also found muscle relaxer like Skelaxin can help.
VFLady: Because of the scar line, it's only the past week or so I can start wearing a bra again. Never thought I would say this, but it's nice to get into something girlie girl again (as opposed to compression tops)!
Stay positive and reward yourself when you reach goals. You can do it!
Let's go Cubs!
hi everyone im new to the computer stuff and im just a goodolboy so dont mind my spelling and stufflike that my kids are i think smarter then me but i have read all youre storys and i feel bad for everyone who has to deal with any type of pain i had a thoracotomy in febuary of 2008 and it is may 2009 and im still in pain they done the surgery because i had pulmonary embolisms and pneumonia in july 13 2007 then in september 2007 had pneumonia again and was in hospital they took more scans and the shadow in my right lung they thought was a infarct now they told me looks like cancer long story shor ******* who done the surgery said it did not look like cancer he took biopsies they came back no cancer but im telling this *** im in pain after surgery and he says its normal it will get better well it didnt so i go looking for a new docter and he diagnoses me with plasma cell granuloma puts me on prednisone 80 mg a day after seeing this new assh-le he didnt like me asking questions so he told me if i didnt like his diagnoses i could get another opinion and i did went on my computer and looked up words on my catscans and found sloan kettering memorial hospital in ny city made an appointment seen new dr december 2008 he made a broncoscopy for january 5 2009 iwas diagnosed with cancer in my right lung i was in the hospital a few weeks ago with more pulmonary embolisms and a new bloodclot id my left leg and on top of all that i have a lung herniation from the thoracotomy that has to be repaired so this means another surgery so if you are in pain keep complaining i know it makes ya mad but they dont know our pain i told one dr did he have a thoracotomy he said no and i told him then how do you know how i feel remember these drs are not youre friend we are only a pay check to them im sorry but thats how i feel maybe there are some nice drs out there but i have not found one yet so i guess thats it for now take care everyone
Wow! You had quite a journey. I will pray the cancer goes away. You're right - the docs don't usually understand what patients are going thru because most of them have not gone thru it. My primary care doc is wonderful, but the surgeon was a pompous a**. We have to be our own advocate, and good for you speaking up! I will keep you in my prayers.
I had a 14 inch thoracotomy incision for serious hernia repair 7/06. After therapy and several months of nerve blocks, in 6/07 the doctor opened the whole incision and tried to do chest repair because my pain was horrible. While one stabbing pain got somewhat better, my overall pain limited me from doing everything.
In 3/08 my pain management doctor implanted a spinal cord stimulator. My daily overall pain has been reduced 60-80 percent. I can travel and do almost everything. I have my life again. See poweroveryourpain.com for stories of spinal cord success although I have not met anyone else with SCS for post thoracotomy syndrom.
Had my 6 month check up w/ surgeon in Nov. He is pleased with the progress I've made.Between the forced reduction in activity, and quitting smoking, I gained 8 lbs. Frustrating for me, but he *LOL* and said any time a cancer patient can GAIN weight, thats a good thing overall. Guess it all depends on your perspective.
I've been running and doing weights I notice I am winded easier, and I have been fighting the same cough-sinus-chest crud eveyone else has been since October. Ribs are still sore, and if I "over do" it, I am in pain that night. Running calls as a medic again, which is great for my psyche. Overall, much improvement since my last post! I know I'll never be 100% of what I called normal again, but I am doing the best that can be expected.
Give it some time & it will get better! My surgery was May 2008 & I still feel some "discomfort" everyday. Some days "pain" even.
Stay strong, you're doing it right.
We had our yearly skills/proficiency testing in September and I even beat some of the guys pulling the hoses!!
I am a 53 yo female who was fit and healthy prior to a motor vehicle accident in Feb 2009. I sustained multiple fractures, including ribs, that caused a right pneumothorax ( collapsed lung). A chest drain was inserted in the ER to inflate the lung and the nerve pain was immediate. Whilst in the hospital I received no pain relief that was suitable; basically I was not believed. Since then, after several visits to the cardiothoracic guy, he acknowledged that I had post-thoracotomy nerve damage, even though I did not have actual surgery. Schedule 8 painkillers (opiates) were prescribed but with little effect. A TENS machine was provided, also with little effect. I also was given amitryptiline (an old fashioned anti depressant) that I think helps a bit. However I now have to live with the side effects (drowsiness, diarrhoea). To date, the pain has diminished but it is still there, along with discomfort. It is located in the right epigastric region and is aggravated by exercise, carrying loads, and the pressure from my bra. The pain feels like a combination of electricity, sunburn and bruising. I recently increased my level of (very moderate) exercise at the gym and this has made the pain worse. Unfortunately I think I will have to live with this pain, I just hope it gets better and not worse.
Stick with it!, you're not even a year out yet. I feel at least discomfort every day! Some days pain. Bra bothers me also, and I didn't even wear one for almost the 1st year - compression tops are good. I tried several styles of bras until I found what worked best for me. Good luck.
i had a thoracotomy in july of 2005 to remove an empyema due to pneumonia that my primary care doc called allergies, cold, etc.., despite an x-ray that showed pleural effusion. here it is days away from 2010 and the only chest problems i have is occasional extreme cramping of the muscles under my rib cage on the surgery side. probably due to having one less rib on that side. BUT, the back pain from the trauma of having my ribs spread is with me continually, especially when getting up in the morning. if i'm in bed for any more than 4-5 hours it feels like someone is leaning on my t-6, t-7 spine with their elbow. have tried tramadol, oxycodone, hydrocodone, physical therapy, no exercise, moderate, and heavy exercise, over the years and have not seen any improvement in my pain level. am currently trying a transdermal nitro patch that my p.m. doc prescribed. if this doesn't help he's reccomending prolotherapy (old technique but still considered experimental). my sympathy to all of you, you are not alone.
four years since my thoracotomy, still in some pain, but no pain pills, they don't help. i don't understand how this all ties to shoulder pain, but i have found MOIST HEAT helps me relax... esp in the evening... good luck all! is there a doctor in the house to address our concerns?
I had a right thoracotomy for something that has never happened before. I had a mass in my right lung which noone could recognize from the x-rays, etc. I underwent 12 chest x-rays, a bronchoscopy, 2 CT scans, a 41/2 hour heart/lung MRI, and finally a PET Scan. Still, noone could identify what was in my lungs. The doctors were afraid to biopsy this because they did not know how this mass would react, so...I had a right thoracotomy to remove this 3.5 centimeter mass in my lung whole. They also removed a small portion of my lung. After 6 - 8 weeks, I thought I should be just fine. What a surprise to me when I wasn't. It is now almost 4 months, and I still have quite alot of pain. I could not tolerate oxycontine and quickly went off it. I have been put on a newer drug - Tridural. This is for long term pain. I take one at night and it holds me really quite well. I then saw my surgeon (he is wonderful), and he added Gabapenten (an antiseizure medications) which is known to help neuropathic pain. I am on both, and I feel like I have my life back, but I would like to take no medications. I try to go off the meds, but after about three days, I can barely move. I certainly hope that this pain does subside, but I had to have two surgeries within 12 hours, and so I have been told that my nerve endings have been totally cut, and this takes a long time to heal. Good luck to everyone...me included. I just never thought that I wouldn't be perfect after the surgery. The mass was not malignant...it was actually part of my heart (pericardial fat pad) that somehow got twisted and went into my lung. My lung then killed it as it was a foreign body and what was removed was dead necrotic tissue. So, I was one of the lucky ones...I couldn't imagine undergoing chemotherapy after this type of surgery.
Thanks for all the above posts. 3 weeks after surgery and after all the contradictory advice of specialists, I was drawing my own conclusion that I would probably just have to learn to live with the pain. Its discomfort rather than pain but the aching back and related tiredness I am determined to overcome. As someone who was very fit and active before the operation, I cannot imagine this restricting my life. Positive mental attitude I believe is the best way to overcome the symptoms. A friend has recommended to me Hypericum and Arnica, homeopathic remedies which help the body to heal its tissues, the Hypericum in particular helps the nerves to mend. As a 'hopeful sceptic' I am trying these together. After only 3 weeks, I am off all conventional medication apart from the odd Tramadol or Co-Codamol for the aches. If this pain ends up lasting a long time, I might as well learn to live with it sooner rather than later.
I try to remember that prior to the surgery, I had a large mass in my chest which meant I couldn't breathe properly. It had to come out and now I can breathe and have the possibility of running again. I try to think of the advantages and believe that I can live with the after effects of the surgery.
Good luck to everybody!
it is now 2 years since my thoracotomy due to carcinoid tumour in lower right lobe -still numb on that side below breast -what is that ?and sore on my right side at times but no sharp pains these days.? and have bra issues with that Im in an iron corset feeling'...'but but am back in underwired bras.I exercised hard'- running mostly before surgery and from about 2 and a bit months after but the pain for the first 2 months was really something and I slept and rolled in bed VERY carefully.
The pain straight after surgery was unbelievable... it left childbirth for dead...I really lost it...cried and moaned like a baby -relieved somewhat after the tubes were removed next day.Intense pain if I moved suddenly for weeks.Medication worked mostly but made me really nauseous and had anti nausea tablets which were great so long as I took all regularly. It is a cow of an operation but what else could they do? However i have promised myself to avoid hospitals in the future.The ( nicely healed ) scar on my back gives me no pain at all -it is all at the front .Go figure.
I am an 37 yr old woman who had a thoracotomy in October of 2009. I thought I was nearly done with the pain. Now it has resurfaced! I have this soreness under my right breast and my back is still tender to the touch from the incision. I recently started to feel this pain in my chest like a pulling sensation. When I turn my head, I can feel a tremendous amount of pressure and soreness. I experience frequent pain on my right side. It is very likely that you will still feel pain for quite some time after this surgery. I pray that you all get well.
Hello, I am currently waiting for a date for my Thoracotomy, to remove a large benign tumour which is on my heart/pulmonary artery and thymus, which got diagnosed 3 weeks ago after an unexpected trip to a&e. The surgeon is making the incision through my ribs on the left side, so that the scar is not down my chest - I am a 28 year old female.
Any tips on how to cope during and after with the pain? I used to do yoga and had kept myself in shape through exercise and an active job, how long was it until you were back to work and able to do things like hoovering etc. Also with regards to pregnancy - we had been TTC up until this diagnosis and am keen to start trying again when healed up, has anyone gone on to have children after the surgery, how did you get on?
Am grateful for any advice, feel a bit in the dark as surgeon said 3-6 weeks recovery but from what I've read online it seems a lot longer!! He didn't give me much information, any thing I should know, other than potentially horrific pain?
To the last two posters - This is a VERY old thread and IF you will go to the top of this page and click on the GREEN TAB that says Post a Question and repost your question you will get a LOT more answers to your question. :)
Thank you and I look forward to seeing your SEPARATE posts started. :).......Sherry :)
"3-6 weeks" is accurate as far as how long I needed narcotic pain relievers (Vicodin was my drug of choice). But at 2 1/2 years post surgery I still feel some degree of "discomfort" every day.
Like you, I was active before the surgery, and that was a great help. I also got active immediately after the surgery (was walking the halls with my foley bag!)
It took 4 months before I was able to return to my job as firefighter/paramedic.
YOU are the best judge of your body. The fact that you are young & in shape is to your advantage.
The best advice I can give you is GET ACTIV & STAY ACTIVE asap after the surgery! Yes it will hurt, but if you can push thru it you will make it.
Jazzercize is my routine of choice - you can start low impact & the instructors are great.
I pray for your speedy recovery.
I am going to try and be more active this week, to strengthen myself for the op. I've been off sick from work for the last 4 weeks though due to the fact am getting a lot of dizziness, bad headaches and general aches and pains, which they think 'it' might be causing, either that or its side effects from some other meds I am taking...feeling very lazy lately!
Will try and get active after the surgery as soon as I can, try and push through the pain barrier! I work as healthcare assistant at a hospital, which is quite physically demanding, so I need to be in good physical health. Also my sick pay runs out in 8 weeks so determined to get back asap!
My husband is 35 years old. He works construction (industrial electrician and pipefitter) He has always been healthy and strong. He had to be in order to do the hard labor job that he does. In May 2010, he began to have severe pain on his right side after he inhaled a large amount of coal/fly ash at work. He went to the doctor after about 2 weeks of pain, and was sent straight to the hospitol. He had a thick gel on his right lung and his entire right lung had colapsed. Because it was a gel not a liquid, it could not be drawn out with a tube. This surgery was the only option. Afterwards he spent a week in the hospitol and about 2 months out of work. The doctor said he would have pain for about 6 months. It has now been 8 months and he still hurts every day. He only takes pain meds. at night(lortab 10mg.) Other than that he just deals with it. As for me, I was very worried. I have been so afraid something more was wrong. Most of his pain is in his back around the scar. Sometimes if he moves the wrong way he says it feels like something is "ripping" inside. After reading all of your post I know more about what to expect and that a pain management doctor may help. Thank you all for telling your story, you have been very helpful.
I had my thoracotomy is 1967 and I'm still experiencing pain in my shoulder, the incision area and unable to sleep on my left side. I had my operation in the army and for years I have been complaining about shoulder pain, but to no avail until recently. In December of 2009 they found a torn tendon and rotor cuff problems in my shoulder and the surgeon indicated that this operation would relieve the pain, but the pain is worse than before.
I had my thoracotomy on March 8th, just a week ago. Still haven't gotten the results back. After reading all your posts and with the pain I'm in, I regret ever doing this surgery! While in the hospital I was in horrific pain and was given two percocets every 4 hours and iv morphine in between. When released I was given percocet with directions to take 1 to 2 tablets every 4 to 6 hours as needed. Well I need it about every 3 hours but make myself go 5. I ran out of the orignal rx after just 6 days and the Dr. acted like I am an addict when I called to get it refilled. Before the surgery the Dr. told me I would only be out of work for 2 to 3 weeks and there would just be some "discomfort"! I'm very angry with the Dr. When released from the hospital I was given a check up for 4 weeks later and told I could not drive, lift,push, pull, or have any kind of sexual activity until after the follow-up appointment, if he released me to do any of those at that time. I don't understand how a week prior to surgery in his office he could tell me that I would only need to be out of work for 2 to 3 weeks, and then release me from the hospital with these restrictions for at least a month. With the constant agonizing pain I'm in I'm doubtful that I would be able to do any of them anyway. Currently I'm getting 3 hours or less of sleep a night, and when I spoke to the Dr when needing the meds refilled I was told that was very common after this surgery, so why wasn't I told this prior to surgery? I'm unable to lay down without horrific pain, so am left to sit up and try to sleep, at this point with only getting a couple hours of sleep a night it is catching up with me and I'm constantly nauseated! I have several different forms of pain in different areas as others have mentioned. The worst however is the pain in my right breast through my arm pit. This pain isn't constant but it doesn't take much to cause it. just slightly moving my right arm can cause it. The only way I can describe it is as if something inside is being ripped, or like a jagged peice of bone is be pushed through all my tissue trying to rip it's way out. I was reading this info hoping that I wasn't alone in this pain, but also hoping that I would find that it rapidly decreased. Which as it appears for the majority of people that have posted it becomes chronic. I'm a 31 year old male and now am left to wonder what if any quality of life I'm going to have left now that I've had this surgery.
At only one week s/p surgery you should expect to be sore. This is a major operation! I'm nearly 3 years now, and still have "discomfort" almost daily. The best advise I can give you is to get active and stay active. It will get better. Give it some time.
Hope you are feeling a bit brighter now and in less pain! I had my thoracotomy at the end of January (and a 2nd one two days later due to post op complications) and as of Saturday am now finally off the painkillers. The first couple of weeks were horrific, and similar pain to what you describe above and I had to also get more stronger painkillers from doctor, after using up the supply I was sent home with and told sternly that I would not get any more either! Re the nausea - did you get prescribed any anti-sickness meds? I was on them both in hospital and for 2 weeks after due to nausea and vomiting, which thankfully eased when came off the stronger pain pills.
However I did follow firemedic330's helpful advice and got myself active quickly, out walking and not sitting for long periods. You know your body though and just be careful, I got told off from my works Occ health dept after telling them I had been doing step aerobics, 4 weeks post op! After the initial 3 or so weeks of intense shoulder and rib pain, it eased to a further 3 weeks of no real change, then in last two weeks has completely eased off, barring a little shoulder ache at times, normally if I've been over doing it. I still have numbness in my left ribs and doubtful I will ever get back feeling, though it doesn't really bother me.
I have a further occ health review this week, with intention to go back to work next week on light duties, and reduced hours for a month. My surgeon also initially said would be off no more than 6 weeks, which seems a general lie according to what I have read online!
The doctors haven't gone thru the surgery - so they don't know what it feels like. Kitten you are right - you know your body better then anyone. I'm very afraid of pain meds because I've seen them destroy too many lives in my field. Be careful out there.
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.
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.
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.
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.
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.
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!!
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).
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
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...
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?
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.
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.
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?
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.
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.
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 ***@****.
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.
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...
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.
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
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.
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.
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