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Nerve pain after 3 weeks with chest tube!


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Thanks, everyone, for your honest sharing! I'm new to Lungevity (love the title) and interested in hearing others' experience. I had a wedge resection of a suspicious 1-cm nodule eight weeks ago (Stage 1, no further treatment). I sprung a good-sized air leak during the surgery and ended up wearing a chest tube for a pretty rough three weeks (no sleep except facedown on my desk). I thought I'd be instantly out of pain when the tube was finally removed, but the pain (armpit, scapula, back of the arm) has been pretty much constant for the past five weeks. I have a great thoracic team that's been prescribing med after med with only some relief from the pain. At the moment I am carefully taking Naproxen (with GERD meds to protect my stomach), Tylenol, lots of vitamins, Metoprolol for a heart thing that happened after surgery. And Oxycodone (5 mg in the evening), somewhat worryingly, because it's the only thing that works. My surgeon and the nurse practitioner have referred me to the hospital's pain clinic, but there's a wait to get seen. Advising me against trying massage, acupuncture or neuro-physio because I'm so acute, they nonetheless reassure me that the pain will eventually go away. However, the pain and crushing fatigue I'm still feeling are making a functional life difficult. ([I'm 75, fit, and in otherwise fine health!] Any experiences shared about lingering nerve pain would be SO appreciated! 

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Denise,

In my first year of treatment, I had 3 thoracic surgeries. The first removed my right lung and the subsequent 2 repaired sutures at the bronchus stump. After my second surgery, I was sent home with a chest tube and it remained installed for 6 weeks. I had to go to the hospital each week to change the receptacle. Buckling into the car seat was a nightmare of discomfort. The result of all this mayhem is chronic pain at about 4.5 out of 10. How does one live with chronic pain? You can read details by reading my blogs, and this one might be a good place to start. I also wrote a book about my treatment experience and you might want to search Amazon for Scanziety.

How does one deal with chronic pain? I had to learn to tolerate it throughout the day. I had all the nerve pain meds (Lyrica and Gabapenton) to no avail. I also used narcotic pain relief (Fentanyl patches and Oxycodone) and these camouflaged the pain but didn't relieve it. My doctors and I finally realized I needed to find a way to cope during the day and focus on a strategy for sleeping because sleeping with chronic pain is a challenge. We settled on a 0.5mg dose of Xanax taken about 30 minutes before bedtime. I've been taking this now for nearly 17 years and it works, most of the time. Sometimes muscle cramps or a bad coughing spasm amps my incision pain and I use Tramadol in place of Oxycodone and Fentanyl. I find Tramadol to be effective and importantly I had less of a narcotic hangover the next day and far less constipation. 

Welcome here. I hope you find relief.

Stay the course.

Tom

 

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Dear Tom,

Thank you, thank you for responding! Wow, so much in there and in your blog post from 2016, which I so appreciate having the link to. Seventeen years! Most cancer survivors probably cringe at being called a "hero" or "brave." It's a whole lot more complicated and nuanced than that, but I'm in awe at what you've survived and all the creative solutions you've tried and either incorporated or dropped. But, oh my God, when you described the agony of getting into a car and then -- yeeouch! -- buckling the seat belt, I knew you knew. I actually live in Canada (Hamilton, Ontario, an hour between Toronto and Niagara), although I'm American. I'm incredibly grateful for our medical system here (not a cent has gone out for any of this and my meds are either covered by our Medicare system or my husband's insurance.) I can't imagine financial pain on top of the physical. Anyway, what I really got from your thoughtful response and your blog post is that it truly is trial and error, and that some things work ... and then they don't. I sprang an air leak a month before my surgery in a biopsy that produced no sample, but which apparently left my lung more "fragile," as the nurse practitioner put it. Wearing a chest tube for 30 hours from the failed biopsy was awful, but nothing compared to three weeks (and a day, but who's counting?!) following surgery. Thank you, too, for sharing that Gabapentin and Lyrica did zip for you. Same here. I just stopped Amitriptyline after nine days of zombiehood. It couldn't keep up with the pain anyway. Yes, lots of heat sacs. I even bought an ice vest on Amazon (probably more designed for rotator cuff pain), but it's cold up here in Canada and wearing it for even 15-20 minutes is an effort. I appreciate knowing about Tramadol, realizing one can't stay on even a low dose of Oxy indefinitely. Oh, and thank you, too, for what you wrote on your blog post about air travel. My husband, youngest daughter and I were supposed to go to India next month for our daughter's best friend's wedding. When I asked my surgeon if he thought I should undertake such a long trip, he told me he couldn't tell me what to do. Thank God, I realized on my own that I couldn't muster the effort right now. And thanks to you, I'm now more prepared for what to expect when I do venture forth again. (Just driving is still not that comfortable or being a passenger on bumpy roads.) Anyway, a million thanks for writing and for letting me know about your blog. Not to mention, your warm and helpful welcome to a community I never thought I'd be part of (never smoked a cigarette in my life), but which I'm now incredibly grateful to have found. Wishing you lots of good sleeps!

Best,

Denise

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