Narcotic pain meds after lobectomy

rmhall@rocketmail.com
rmhall@rocketmail.com Member Posts: 1
edited July 2022 in Lung Cancer #1
I had a lobectomy Dec. 13, with a huge open incision. I am still in so much pain, it's hard to breathe or be active, yet my doctor wants me to switch from percoset to regular over the counter tylenol. It's doing pretty much nothing. What has been your experience with a reasonable time to continue needing pain meds???

Comments

  • ellenm4
    ellenm4 Member Posts: 124
    sorry to hear
    I am sorry to hear this. I had mine done VATS and had 2 drain tubes with 6 days in th hospital. Mine was done on Dec 7. My doctor sent me home with Vicoden 750 with 3 refills. Tell you the truth at times this did not help my pain, but I find I still have shooting pain from under my arm and under the breast with a numbing type pain. I know that having th long cut is more pain full and my heart goes out to you. Have you told your doc how great the pain is? Please keep us updated on your progress. Are you doing your breathing exercise? I am still doing mine. It is not easy to do at times. The tightness in my chest has only been gone for about a week, but it still hurts to cough and the hic-ups are not fun either. It does get better, hang in there. God Bless!
  • joep531857
    joep531857 Member Posts: 32 Member
    Pain meds
    I will be one year post op vats lobectomy on Jan 18th. I still have pain at the site when i cough along with tightness under my arm. I also have numbness which i assume is nerve damage. I am on Gabapentin for neuropathy in my hands and feet from chemo, that hasnt helped with the nerve damage under my arm. My oncologist gave me oxycontin which took care of any post op pain. I would be straightforward with my doctor, and Im sure he will give you something besides tylenol. My breathing is not good but I think that is from copd. My stamina is non-existent but I do walk daily for exercise (no hills). But it beats the alternative and I will live withwin my limitations. I would encourage you to keep using your blow toys to build up lung capacity. I wish you a quick and speedy recovery. I felt lousy for a couple of months post operatively. So try and be patient and positive.
  • cabbott
    cabbott Member Posts: 1,039 Member
    VATS vs. Regular
    If you had a regular open incision, it is normal to have pain for a very long time. With a VATS incision,the incisions can be covered with a few bandaids and a month is plenty of time to be on pain meds and then to switch to regular tylenol. But the larger the incision, the longer the recovery. Regular surgery may entail an incision of 9 or more inches. My friends who have had that kind of surgery tell me that it took over a year (some took two years) before they were able to start feeling nearly back to normal without meds, especially at night. I don't want you to think that it will take that long for you to recover. All patients are different. But while you don't want to be on opiates longer than necessary, there are no brownie points for suffering either. I would consider asking for a consultation with a pain specialist if you have one in your area. They may have some ideas for reducing the pain and optimizing your recovery. There are ways out there to stop pain. Some involve medicines and some do not. For instance, getting lost in a special interest (for one of my friends it was dance, another liked crafts, for me it is cooking or reading) can often stop pain from registering for several hours. Music works for some people. Yoga works for others, but get the surgeon's okay before you start any exercise programs. I love exercise and feel much better on those days that I work out, but I had to start very slowly after surgery. Surgeons get really put out if you overdo and mess up their stitches!! Another alternative to meds involves a machine that delivers a low dose of electricity that stops the pain from reaching your brain. My sister had such a machine that fit discreetly under her clothes. She could give herself a zap anytime she was experiencing pain without causing the kind of mental dullness that comes with pills. By using the non-med approaches during the day she could avoid using so many meds. Sometimes rehab can help reduce pain by increasing muscle strength. And sometimes you just have to have meds, but it is still best to take the minimum amount needed to reduce side effects. If there is no pain specialist, try talking with your surgeon and have him or her write a letter explaining what support would be normal given your surgery. Again, rehab, non-medical pain relief alternatives, and medical help may all be needed as you regain your new normal.
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    cabbott said:

    VATS vs. Regular
    If you had a regular open incision, it is normal to have pain for a very long time. With a VATS incision,the incisions can be covered with a few bandaids and a month is plenty of time to be on pain meds and then to switch to regular tylenol. But the larger the incision, the longer the recovery. Regular surgery may entail an incision of 9 or more inches. My friends who have had that kind of surgery tell me that it took over a year (some took two years) before they were able to start feeling nearly back to normal without meds, especially at night. I don't want you to think that it will take that long for you to recover. All patients are different. But while you don't want to be on opiates longer than necessary, there are no brownie points for suffering either. I would consider asking for a consultation with a pain specialist if you have one in your area. They may have some ideas for reducing the pain and optimizing your recovery. There are ways out there to stop pain. Some involve medicines and some do not. For instance, getting lost in a special interest (for one of my friends it was dance, another liked crafts, for me it is cooking or reading) can often stop pain from registering for several hours. Music works for some people. Yoga works for others, but get the surgeon's okay before you start any exercise programs. I love exercise and feel much better on those days that I work out, but I had to start very slowly after surgery. Surgeons get really put out if you overdo and mess up their stitches!! Another alternative to meds involves a machine that delivers a low dose of electricity that stops the pain from reaching your brain. My sister had such a machine that fit discreetly under her clothes. She could give herself a zap anytime she was experiencing pain without causing the kind of mental dullness that comes with pills. By using the non-med approaches during the day she could avoid using so many meds. Sometimes rehab can help reduce pain by increasing muscle strength. And sometimes you just have to have meds, but it is still best to take the minimum amount needed to reduce side effects. If there is no pain specialist, try talking with your surgeon and have him or her write a letter explaining what support would be normal given your surgery. Again, rehab, non-medical pain relief alternatives, and medical help may all be needed as you regain your new normal.

    Tylenol did nothing for me
    I had the UR lobectomy in Sept. 2009. About 3 weeks afterward the surgeon told me to stop taking hydrocodin and start using Tylenol, and after the first day I was positively miserable. I saw my pulmonologist to ask if there is anything else I can take, since Tylenol doesn't help at all. He rolled his eyes and said he disagrees with the surgeon. He said it's OK to keep taking hydrocodin for awhile longer so I took it for another 2 or 3 weeks. During that extra 2 or 3 weeks I slowly weaned myself down and I used ibuprophen as a supplement. I continued taking ibuprophen here and there for a few months after that.

    It's now been 2 years and 4 months since my surgery and I still feel some discomfort. I have numbness and strange pains under the breast, but nothing too serious. It still hurts to sneeze. I still feel like there has been some digging in my chest, but again it's not that bad. I don't expect this to ever go away but I can live with it and I rarely take pain meds anymore.

    Your surgery was very recent and recovery from a lobectomy can be fairly long for some of us. We all have to take this at our own pace so just do the best you can to follow the doc's advice. Don't get discouraged if healing doesn't come as fast as you would like it to. Just remember that sometimes the road to healing can be long.

    And please try ibuprophen in place of Tylenol, after clearing that through the doctor. Good luck.
  • grannylove
    grannylove Member Posts: 183
    Take heart....
    it will get better. I am sorry to hear you are dealing with so much pain though. After what you have been thru, you can count of pain. It has been 8 months since my lobectomy whereas I also had a full thorocotomy. My surgeon even told me that he would rather have open heart surgery instead of a lobectomy. The first few months were very uncomfortable but I did feel alot of relief when I stayed mobile and did alot of breathing exercises. There are some really good ones on Youtube from a respirtory therapist that you can look up. This is a tough surgery for sure, but please know that this surgery is doable. Getting the cancer out of your lung gives way to a possible better prognosis. You are early in your recovery so don't be afraid to take some pain meds but try and make goals for yourself. The first month, I took the pain meds as prescribed, trying to keep ahead of the pain. After that, I tried to wean myself off somewhat by using moist heat, gentle stretches and breathing. Breathing is the best due to the oxygenation of the healing muscle tissue that the breathing brings in. I took a pain med in the morning and one in the evening and very rarely during the day. But everyone is different. Also know that narcotic pain meds can cause constipation and curb your appetite. During the healing process you need to eat a well balanced diet. If constipation is an issue, you can take a stool softener (ask your doc, of course) or may I recommend Natural Calm, which is a magnesium powder that you mix with hot water as a hot drink. It comes in flavors but I used the regular and put a few tsps. of lemon juice to cover any off taste. I would drink 2 cups a day. No problems after that. I know that you are wanting to get back to your normal life but know that you will be finding a new normal. But it will be one that you can definitely live with. Exercise those lungs though, very important!! And walk around the house or outside if you can. Alittle at a time and you will see your progress. You might see progress on a weekly basis at first then you will see progress on a daily basis. You can do this! Know that we are here for you and we know what you are going thru. Stay strong and keep breathing my friend. God's blessing to you. Cheryl
  • ellenm4
    ellenm4 Member Posts: 124

    Take heart....
    it will get better. I am sorry to hear you are dealing with so much pain though. After what you have been thru, you can count of pain. It has been 8 months since my lobectomy whereas I also had a full thorocotomy. My surgeon even told me that he would rather have open heart surgery instead of a lobectomy. The first few months were very uncomfortable but I did feel alot of relief when I stayed mobile and did alot of breathing exercises. There are some really good ones on Youtube from a respirtory therapist that you can look up. This is a tough surgery for sure, but please know that this surgery is doable. Getting the cancer out of your lung gives way to a possible better prognosis. You are early in your recovery so don't be afraid to take some pain meds but try and make goals for yourself. The first month, I took the pain meds as prescribed, trying to keep ahead of the pain. After that, I tried to wean myself off somewhat by using moist heat, gentle stretches and breathing. Breathing is the best due to the oxygenation of the healing muscle tissue that the breathing brings in. I took a pain med in the morning and one in the evening and very rarely during the day. But everyone is different. Also know that narcotic pain meds can cause constipation and curb your appetite. During the healing process you need to eat a well balanced diet. If constipation is an issue, you can take a stool softener (ask your doc, of course) or may I recommend Natural Calm, which is a magnesium powder that you mix with hot water as a hot drink. It comes in flavors but I used the regular and put a few tsps. of lemon juice to cover any off taste. I would drink 2 cups a day. No problems after that. I know that you are wanting to get back to your normal life but know that you will be finding a new normal. But it will be one that you can definitely live with. Exercise those lungs though, very important!! And walk around the house or outside if you can. Alittle at a time and you will see your progress. You might see progress on a weekly basis at first then you will see progress on a daily basis. You can do this! Know that we are here for you and we know what you are going thru. Stay strong and keep breathing my friend. God's blessing to you. Cheryl

    just wondering
    I had mine done Dec 7 and I am getting better with time. I have a numbing pain from under my arm that goes under the breast to the breast bone. When this starts in, the pain gets bad, but I try to just breath and walk some. The last few days I have been having a cough when I first get up in the morning and it last for the first 3 hours, then it is better but then my chest starts hurting some from coughing so much. Is this normal or should I call the doctor? I thought it might be from just getting up and moving more. I still do my breathing exercise several times a time. I feel fine, but this evening late I did get the shakes. Was just a little shakey. Maybe I am doing too much. Any help would be appreciated.
  • grannylove
    grannylove Member Posts: 183
    ellenm4 said:

    just wondering
    I had mine done Dec 7 and I am getting better with time. I have a numbing pain from under my arm that goes under the breast to the breast bone. When this starts in, the pain gets bad, but I try to just breath and walk some. The last few days I have been having a cough when I first get up in the morning and it last for the first 3 hours, then it is better but then my chest starts hurting some from coughing so much. Is this normal or should I call the doctor? I thought it might be from just getting up and moving more. I still do my breathing exercise several times a time. I feel fine, but this evening late I did get the shakes. Was just a little shakey. Maybe I am doing too much. Any help would be appreciated.

    Ellen
    Feeling the tugging and numbness in this area seems to be the norm but I never had any problems with a cough but my surgeon always asked me if I had any coughs with or without sputum. Not sure whether that is a good sign or not but if you feel any concern, you should contact your doc. There are no stupid questions and it might be something that he/she would want to know. It is has not been that long since you had surgery so I would definitely make a call, especially since you have not had a cough before. And getting the shakes is definitely means for a call. Could be nothing but you deserve some peace of mind. Good to hear you are doing breathing exercises and walking....makes a big difference for sure. Stay strong ellenm4! Blessings to you and a speedy recovery! Cheryl
  • RevSellman
    RevSellman Member Posts: 3
    Pain meds
    Sorry to hear your in so much pain. I guess it really depends on time and tolerance. I had a right upper lobectomy way back in March of 2001. I went through the same as you...sent me home with about a month supply of percocet. I guess I transitioned well enough, although, during my surgery I suffered an over-torque if that makes sense. They pushed too hard forward on my rib cage and now I have costochondritis where the ribs meet the breast bone. I have had this since surgery and am on a long term pain management program that includes twice daily doses of Morphine. Just the simple act of breathing causes pain. I wish I could say it is getting better, but there really isn't any "cure" or treatment for this condition. With one exception...cutting the nerve that goes across the chest. I won't allow that. Everything goes numb then. About all I can say is that things should get better over time. Your body will adjust and heal and things should get much better. If pain is still a major problem, I would certainly address this with your Doctor. Quality of life is extremely important after a surgery like this. With reduced pain comes reduced blood pressure and such. I would talk with your doctor and let him/her know your pain level is not where it should be. They may find something that will work for you. Good luck and I hope you continue to improve.
  • ellenm4
    ellenm4 Member Posts: 124

    Pain meds
    Sorry to hear your in so much pain. I guess it really depends on time and tolerance. I had a right upper lobectomy way back in March of 2001. I went through the same as you...sent me home with about a month supply of percocet. I guess I transitioned well enough, although, during my surgery I suffered an over-torque if that makes sense. They pushed too hard forward on my rib cage and now I have costochondritis where the ribs meet the breast bone. I have had this since surgery and am on a long term pain management program that includes twice daily doses of Morphine. Just the simple act of breathing causes pain. I wish I could say it is getting better, but there really isn't any "cure" or treatment for this condition. With one exception...cutting the nerve that goes across the chest. I won't allow that. Everything goes numb then. About all I can say is that things should get better over time. Your body will adjust and heal and things should get much better. If pain is still a major problem, I would certainly address this with your Doctor. Quality of life is extremely important after a surgery like this. With reduced pain comes reduced blood pressure and such. I would talk with your doctor and let him/her know your pain level is not where it should be. They may find something that will work for you. Good luck and I hope you continue to improve.

    In my prayers
    RevSellman you are in my prayers as well. I can only try to imagine yur pain. Unfortunally we all take a chance of something going wrong when we have even the simplest of surgery. I had nerve damage from my breast surgery in 2008 it is a numbing pain from the arm pit to the elbow. The pain is very intense at times. Now after my lung surgery on the same side as the breast was, I now have nerve damage which goes across the bottom part of my boob and and shoots toward the center of my chest. Please keep us apdated on your recovery. God Bless!

    Ellen
    With Peace you will find Love, with both you will find Eternity!
  • RevSellman
    RevSellman Member Posts: 3
    ellenm4 said:

    In my prayers
    RevSellman you are in my prayers as well. I can only try to imagine yur pain. Unfortunally we all take a chance of something going wrong when we have even the simplest of surgery. I had nerve damage from my breast surgery in 2008 it is a numbing pain from the arm pit to the elbow. The pain is very intense at times. Now after my lung surgery on the same side as the breast was, I now have nerve damage which goes across the bottom part of my boob and and shoots toward the center of my chest. Please keep us apdated on your recovery. God Bless!

    Ellen
    With Peace you will find Love, with both you will find Eternity!

    ellenm4, How long ago was
    ellenm4, How long ago was your lung surgery? Mine was almost 11 years ago. I had the same numbness and pain from the damaged nerve as you do, however, most of that has gone away. I still have a small patch under my pectoral that is still numb, only about the size of a half dollar. I remember that as the nerve healed itself, I would get shooting pains across my chest that would make me jump in my seat. I really hated that. But after all these years, that has gone away. I still deal with the costochondritis daily, and will forever. Nothing to be depressed about. Just taking it one day at a time and remaining thankful to God for every day I have been given since my diagnosis.
  • ellenm4
    ellenm4 Member Posts: 124

    ellenm4, How long ago was
    ellenm4, How long ago was your lung surgery? Mine was almost 11 years ago. I had the same numbness and pain from the damaged nerve as you do, however, most of that has gone away. I still have a small patch under my pectoral that is still numb, only about the size of a half dollar. I remember that as the nerve healed itself, I would get shooting pains across my chest that would make me jump in my seat. I really hated that. But after all these years, that has gone away. I still deal with the costochondritis daily, and will forever. Nothing to be depressed about. Just taking it one day at a time and remaining thankful to God for every day I have been given since my diagnosis.

    how long ago
    Revsellman, my lung surgery was done Dec 7, 2010. It was very recent. I had breast cancer in 2008 and had surgery (same side-left) and I have that same numbing pain from my arm pit under the arm down to the elbow. So when I started having it this time I knew what it was. The surgeon agreed today and told me to do as I did then....give it time! I just hate the time if you know what I mean. I am glad that you are doing well 11 years later. Stay strong and stay in touch.
  • RevSellman
    RevSellman Member Posts: 3
    ellenm4 said:

    how long ago
    Revsellman, my lung surgery was done Dec 7, 2010. It was very recent. I had breast cancer in 2008 and had surgery (same side-left) and I have that same numbing pain from my arm pit under the arm down to the elbow. So when I started having it this time I knew what it was. The surgeon agreed today and told me to do as I did then....give it time! I just hate the time if you know what I mean. I am glad that you are doing well 11 years later. Stay strong and stay in touch.

    I am doing well, and thanks
    I am doing well, and thanks for the well wishes. Just like your Doc said...just give it time. You will go through different stages of nerve regeneration, and each will be unique and independent of each other. First is the numbness you now have, followed by the "pins and needles" I associated with my foot falling asleep only stronger. It may be intermittent or constant, as mine was. Sometimes it will become quite annoying. Last, the pins and needles feeling will subside over time, but will be followed by unnanounced sudden sharp pains. It'll make ya jump and twitch and can be quite painful, but last mere moments. As time goes by, these will become less severe and will occur less often until they disappear. The pain I have now is a "side effect" or a consequence I call it, to having a Thorocotomy. Over-stressing the small joints at the breast bone causes an almost arthritic type of condition in the chest, but the pain isn't dull and constant like arthritis. It is at every breath...sharp and painful. But again, I continue to muster along and manage to work a normal job and have a family life with the help of medication. I guess you can say I kind of have a leg up on all this. I am two time cancer survivor. As a young man I had a gastric teratoma that was malignant removed from the outside of my stomach. That one was a full on stage 3A that weighed in at 1Kg (2.2lbs) and required not only resection but chemo and radiation as well. Only advice I can give to anyone, is just keep on living, and believing. Your path will be laid out for you as long as you keep your spirits up, family and friends close, Doctors informed, and spiritually close. Prayer helped me, so I know it can help others. The Rev in front of my name is there for a reason.. :)
  • dlucia1956
    dlucia1956 Member Posts: 2 *

    I recently had a right lower lobe lobectomy as of just 11 days ago and was on Hydrocone in the hospital and for a week after coming home. I was told to switch over to Tylenol as well and it didn't help much at all. A friend who is a retired RN also told me I could take Ibruprofen and Tylenol together (1 Ex Strength Tyl and 2 Ibru) every 4-6 hour and that helped some. I'm ready to see a pain specialist for something better as I dont wish to go back to narcotics.