How was your pain after a lobectomy?

Posted by elyser @elyser, Apr 24 1:02pm

I'll be having a lobectomy (lower left) in early May and am very anxious about the post-surgery pain. Many years ago (about 35) I had a hysterectomy and remember being in tremendous pain when I woke up -- like nothing I had experienced before. That eased up while I was in the hospital but at home I had a lot of pain again. I think things have changed, the surgery itself as well as the approach to pain, but I am scared. How has it been for others?

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cmcguire10 | @cmcguire10 | 4 hours ago

In reply to @pingguo "Admire you, such a good planer!" + (show)

Honestly, I planned so much that I probably didn’t need half of what I got but better to have and not need than to need and not have. I learned a lot from this site ahead of time. I was more worried about taking care of my family’s stress because it eased mine that way. I felt I was in Great hands at Mayo, so I was more worried about my husband stressing over taking care of me when I got home, so I tried to make it easier on him which made it easier on me. 🤗

yellowstonelady | @yellowstonelady | 5 hours ago

I had upper right and middle right lobes removed in 2000 at age 46. I have a problem with oxy type drugs as they make me throw up. I had an epidural but after a few days it was making me hallucinate so they removed it too. So my pain was very bad. I was in hospital for about 11 days. I'd grown up on a farm and been hurt countless ways working around big animals but never ever had I experienced such pain as my bilobectomy.

Two years later I had my hysterectomy C section which was a walk through the park. Easy and the pain was 1/1000 of the bilobectomy. I was out running about campus in a few days.

Now I am 71 and there is just about no way on earth anyone could ever convince me to have another lobectomy.

pingguo | @pingguo | 10 hours ago

In reply to @cmcguire10 "I had an upper left lobe Segmentectomy, not a full lobectomy, in March of 2023. I..." + (show)

@cmcguire10

I had an upper left lobe Segmentectomy, not a full lobectomy, in March of 2023. I had the VATS surgery. (Robot assisted surgery, or video assisted). Surgeries have come a long way! It will depend on what type of surgery they are doing for you.
Anyway, no real pain in the hospital, of course they are there doing everything for you and giving you your meds on schedule. They send your prescriptions to your pharmacy, for when you go home. Make sure you have it set up for someone to pick them up for you. You should plan all this out now before your surgery. I ordered prepared meals for my entire family for at least a week so as not to stress anyone about making meals. I bought a bed table to eat at, and I already had my adjustable bed. THAT was the best investment I’ve ever made! After you get home, the hard part is figuring out how to sleep and move. The bed was great because I could sleep propped up, I could adjust it up to almost sitting so I could just turn a bit and get out of bed. No pressure on trying to push myself up that way. That causes some pain. You can always use lots of pillows to do the same thing. You do NOT want to put any pressure on your side. Take the meds even if you don't think you have pain, because it WILl come. If you stay on top of it, it will be good. I only had to take mine for a week or so. I was told not to lift anything heavier than a gallon of milk for about 4-6 weeks. You can really hurt everything if you don’t follow the doctors orders! The best thing to do is walk! Start just around inside your home. Then a little outside. Try to make sure someone is with you to help you back if needed. Breathing is scary at first because you don’t know what to expect, but I was so happy I could breath normally after the first week! Walk and walk and walk after you feel comfortable. Best medicine in the world for healing and breathing! I now am a personal shopper and I have to walk really fast to get the order shopped and then deliver it. A lot of orders have cases of waters (heavy!), etc. I’m telling you this because I want you to see you can get back to notmal. Just be Careful and Slow during your recovery! God Bless you and I pray that you have a full and speedy recovery!🙏🙏🙏

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muffyy | @muffyy | 14 hours ago

Hello moderator
I wrote a comment here and was in the middle of editing and must have posted it by accident. Can I get it back to finish?
Thanks,
Muffy

gprior | @gprior | 1 day ago

Do let us know how you fare with your surgery. I too have been thinking of you and wish you all the very best. You are probably getting quite anxious but as I said previously you'll be OK and by this time next week it'll be all over. Pain is managed and don't forget your cushion to hug, helps a lot when coughing etc. Wish you a speedy recovery

elyser | @elyser | 1 day ago

Thanks for checking in @maryckolben! My surgery is Friday.

maryckolben | @maryckolben | 2 days ago

In reply to @maryckolben "Hi Elys I am 13 days post surgery for upper right lobectomy via robot VATS. I..." + (show)

Elise
I have been thinking about you. Hope if you had surgery, you’re doing ok.
Xo

yts5361 | @yts5361 | 2 days ago

In reply to @elyser "Hi @yts5361 Your experience with pain is what I'm afraid of, actually worse than my fears..." + (show)

Hi,
Because of where the nodules were, he had explained it would be a small incision to reach and biopsy them.
If cancer was found, he would make a larger incision and spread two ribs.
As he explained it, it was like getting punched in the ribs but that in one to two days, I would be fine.
The incision was 20cm plus the ports for the chest tubes. But was told I would have one and it would only be left in for 48 hrs once the drainage stopped.
When I was discharged, his associate surgeon said I would still have some drainage but it would subside, it did three days later, hence I was sent home on oxygen and still require it when I walk more than 10 mins. I’m used to running and or walking 3-5 miles a day so o be this incapacitated is again something I never thought about.
I’ve read different experiences, this is mine. So far I have seen 6 doctors because of the after effects of the surgery.
Each ask the same question: why was I not told I had fractured 4 ribs two that were spread and one above and below the two causing pain that I wouldn’t even wish on my ex husband.
Please research and if the surgeon is vague about pain, aftercare etc explain, your not a surgeon who has done this many times, your a person who is putting your trust in their hands for the best outcome.

Take care

elyser | @elyser | 2 days ago

Hi @yts5361

Your experience with pain is what I'm afraid of, actually worse than my fears because in my worst-case-imaginings the really bad pain doesn't go on for more than a day, two days tops. I'm sorry you had to experience this nightmare and I really hope I don't have to deal anything like that.

Did you have the VATS surgery with the three small incisions or did they do a long incision on your back? My understanding is that if they can do the VATS, they don't have to move your ribs. My mother had a thoracotomy over 30 years ago and it did involve her ribs and I do remember a long and painful recovery for her. (She did live another 20 years though!)

yts5361 | @yts5361 | 2 days ago

Hi,

I had an upper left lobectomy in March, performed by an accredited thoracic surgeon. I’m 63 years old and have generally been in good health throughout my life. I was referred to the surgeon because the nodules were too close to my heart for a biopsy without undergoing surgery.

The lobectomy was discussed, but I was informed that it might not be necessary if the nodules could be biopsied and removed. I expected to have the surgery and stay in the hospital for a couple of days.

However, I woke up to intense pain that I can only compare to being tortured. I had to be kept sedated for the first three days because I couldn't control my screaming and felt the urge to pull out the chest tubes. I spent six days in the Spine/Lung/Heart ICU and two additional days in a regular hospital room while they monitored my pain level, which remained at 8 when I was discharged.

As of May 2, my pain level has decreased to a 5. One thing I wasn't adequately informed about—though I was vaguely aware—was that the surgery involved stretching my ribs, and I had actually fractured them while in extreme pain in the ICU. I didn't learn this until I went to the ER due to difficulty breathing. The doctor showed me the fractured ribs and asked how long I had been in pain. I told him I had been in pain since the surgery. When I informed my surgeon, he simply advised me to take an Advil and claimed I would be fine.

My oncologist prescribed me Norco 7.5-325 three times a day, gabapentin 300mg twice daily, and a muscle relaxer of 100mg twice daily. My primary care doctor was also curious as to why I wasn’t better informed about my condition.

I work in law enforcement and have had knee replacements and a bladder sling procedure, which felt excruciating, so I typically handle pain well. However, this experience has been entirely different, and I am still struggling with it. It is especially difficult because I am facing this alone. The surgeon deemed it unnecessary for me to have help, and since I live alone, my dog, a husky, has been staying with a friend because I am currently unable to care for her.

In terms of mobility, I was walking unassisted within a week after each knee replacement, but now I am walking like a frail 100-year-old.

I urge others to educate themselves and not just rely on the credentials displayed on doctors' walls. Insist on clear details about procedures and any potential changes that may occur during surgery. As I told my surgeon, "You are a great surgeon but poor at communicating the 'what-ifs' to your patients."