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Things my doctor didn't tell me...
Hi All- I had surgery in July- a upper lobectomy in my right lung. I was also diagnosed with emphysema. After my sugery at UCSD (BTW, a great hospital and the best doctors and staff!) I was sent home after 9 days in the hospital with a lot of pain meds and a big bill.
Nobody told me how painful this surgery is- my primary care doctor finally told me after I'd been in horrible pain for 2 months that it's the most painful surgery you can have! It takes 4-6 monthe to fully recover.
I think if I'd been more prepared for the pain it would have been easier. I told my surgeon this and he said, "But if we told patients just how painful it would be, it would frighten them". I suppose that would be true, but I think if a patient is well informed about surgery and post-surgery, they won't be surprised and would be better equiped to handle post surgery.
Also, before my surgery, I had a LOT of tests- PET scans, CAT scans, lung x-rays, blood tests, etc. I made sure I asked about all the tests and why I needed them. I only got the info after I asked. Same for my pathology report- I was told that I wss totally free of cancer and I didn't need chemo or radiation (woo-hoo!) but was never told about the actual cancer- I had to ask my promaty doctor several weeks later what exactly the path report said. She luckily had access to my records and showed me the report. It really helped to see the real report and have her explain what all the jargon meant!
Did anyone else have these issues?
Elaine
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Replies to This Discussion
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Permalink Reply by AmyLCA on -
Hi Elaine,
One of the reasons your doctor didn't tell you those things about pain is because not everyone experiences what you experienced. Some patients have a few days in the hospital with pain that is controllable and then spend some more time on pain medications when they get home, but by a few months down the road, no pain at all. Everyone is different, and every surgery will be different. Having an upper lobe removed will be different than having a lower or middle right lobe removed. Having VATS or minimally invasive surgery will be different from having a thoracotomy. And everyone's pain threshold is different too! I have a terribly low pain threshold. My dentist is always amazed by how much Novocaine I need for pretty simple procedures. On the other hand, my mom walked around on a fractured pelvis for weeks thinking it was just a mild nuisance!
It is a little bit concerning that you walked around in "horrible pain for 2 months." There are generally adequate ways to manage pain, although there may be undesirable side effects from the pain management medications, but being in constant pain slows down the healing process. If you still have pain that cannot be controlled by the usual medications, it might be good to get referred to a pain management specialist.
It's always good to ask about pathology reports and about other tests. That's not always info that doctors will spell out for you if you don't ask. But asking can make you a more well-informed patient which can be a huge benefit in the long run. So, good for you for feeling comfortable asking! Not everyone does!
Amy
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Permalink Reply by ElaineK on -
Hi Amy- Actually, my surgeon told me I would have severe pain, but I didn't know it would last as long as it did. When I was still in severe pain 2 months later, my surgeon told me it could last from 3-4 months. And the worst of the pain was over in about 2.5 months. But I still have a lot of soreness- the surgeon cracked a rib (fairly common in this surgery and something he DID warn me about) and even now I'm still sore.
No matter how strong the painkiller, they don't eliminate pain. They make it bearable. I've been to pain specialists for migraines and know the drill. All you can do is know that the pain will go away eventually and try to do as much as you can. Pain is part of the healing process, and there is no magic bullet. But I think for me, when I found out that I WAS healing well and progressing and that the pain is within "normal" range, it helped me a lot.
Elaine
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Permalink Reply by GADawg/MOD on -
Hi Elaine,
My mom had an upper right lobectomy and the docs warned us it was going to be really painful and a slow recovery. But then she sailed through it! Off pain meds and back on her feet almost 100% within a month. So you never know, like Amy said. I think I'd rather not know it was going to be painful before the surgery, because I'm such a chicken I'd probably try to back out of it! I hope you're feeling better now. And yes, I have found that you have to ask- sometimes many times- to get test results and get them explained to you. Kudos to you for being such a great patient!
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Permalink Reply by ElaineK on
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Hi- Isn't it funny how some people can just sail through things that would bring someone else to their knees? That's what is so amazing about the human body- everyone reacts differently. It's funny- when I asked about the surgery, I was told it would be VERY painful. BUT I had nothing to compare it to- I never had surgery, broken anything, or had kids. I guess I compared it to migraines LOL. Anyway, I think for me I wanted to know what to expect, but I can see wanting to be blissfully unaware too :)
Elaine
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Permalink Reply by LeeMy49 on
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Dear Elaine, I went through the same thing! But, I went to get my reports, I even looked at them after they did them. I was told I couldn't do this. I told them it was my lung and I was paying for it. You have rights and make sure you use them. Yes, I hurt and still hurt, mind was in Oct. 2006 but it helps if you can do alot of swiming and some kind of excise you can handle. I didn't take any pain medications when I got home, I was by myself, my husband left before my sugery. I relized then to live like you were dying. 6 weeks after sugery I went back too work, you see I am a nurse and I needed my patients to get me through my problems. Not think about myself but they needed help too. Well Oct. 2008 I had thyoid Ca, God helped me it hadn't met. I am one luckey woman. If it shows up again, back to fighting again. God Bless you and thank you for listening to me run off at the mouth.. Keep in touch!! Yvonne
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Permalink Reply by ElaineK on
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Hi- Thanks for the reply! Sorry to hear about your recurrence. I pray everything will work out for you. Keep fighting and stay strong!
Elaine
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Permalink Reply by Merry on
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Absolutely!!! But everyone reacts differently with pain. I had terrible cramping after my first surgery that was a lower right lobectomy. I can still feel a twinge every now and then after 14 years. I also had 2 broken ribs and was never told about those and wound up re-breaking one of them just before Thanksgiving. Now that was painful!!! For my second cancer on my left lung, 3 years ago I lost my upper left and lingula (sp) and a pulmonary artery re-section. The only pain from that was one of the drainage tubes rubbing against the wall of my chest too high for the pain mes to help. I had no pain from the surgery compared with my first surgery. The thing I hated was the blood transfusion after taste. Wish someone had told me that I would taste metals and my smell would be off. Everyday try and do some stretching. That really helped me. Move around some and get the blood flowing in your surgical area to help increase healing!!! Give yourself time!!! You'll feel better before you know it!!!
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Permalink Reply by ElaineK on
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Merry- Thanks so much for your post! Sounds like you've been through a LOT! I had a lot of strange after-effects as well. Food tasted different and now my hair is falling out in clumps. No, I didn't have chemo or radiation- apparently the trauma from surgery can make your hair fall out! But when I freak out about it, I remember that I'm cancer free and my hair will grow back! Take care!
Elaine
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Permalink Reply by ElaineK on
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Thanks to all of you for your replies! I hope I didn't give the wrong impression about what happened to me- of course everyone is different and the post-surgical pain can vary from person to person. However, my surgery was in the upper left lope (sorry I made the mistake in my post) and the doctor tried to use the less invasive VATS but had to resort to a standard incision. He also cracked a rib. I was in the hospital for 9 days which I was told is pretty standard. The pain meds controlled the pain to an extent, but only MANAGE the pain. When I got home, I was in a lot of pain just trying to sleep, and the nerves in my torso is still healing. I've had migraines for years and have dealt with severe, chronic pain. I have never felt anything like this before. But that has just been my experience.
I think that as a patient, it's up to me to be responsible for my healing, and to be as informed. I make sure I ask questions because I think most doctors forget that we need to know as much about our medical issues as possible.
Luckily, the doctors that have cared for me through this have all been amazing and I'm so glad that I such great support through this experience.
Elaine
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Permalink Reply by LeeMy49 on
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Just a few words to give you some peace.. I still have a little pain and mind was in Oct. 2006. I think mind is just the nerves acting up in the incisions. My Dr. tryed less invasive procedure, they were just suppose to take a pie portion but ran into trouble and took the whole lobe. They broke 3 ribs, one year later I coughed too hard and broke one ,that had was still healing. Yes Drs. forget alot, I have worked with them enough, but be brave and ask questions. They are only human like us, they do forget to inform you of alot of these things. I went and got my hospital records, they didn't bother to tell me they had to use the paddlles on me to start my heart back or I started running a fever in surgery of 105. Things like this they just forget.. As a nurse I guess I want to know everything. Really they don't like this. Good luck keep in touch!! Yvonne
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Permalink Reply by Kenny on -
I too experinced severe pain. Had my upper right lobe removed. That was in Jan. 2008. Still feel a little sore at times. But I agree that is one of the most painfull and long lasting pain I have ever had, No fun at all. I did find the sooner you can get the pain under contol the better. I did this by doubling the pain meds first thing in the morning after that as much was not needed.
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