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Post Thoracotomy Pain
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IsSharonHome posted:
I had a thoracotomy almost 4 months ago to remove a mass on my esophagus. I am taking 300 mg of Neurontin 4 times a day. I have found by cutting out caffeine and refined sugar, my pain is reduced to mostly discomfort. I also seem to do better when I drink more water. I still have a significant amount of numbness and shooting pain, but nothing like I had after surgery. I remember thinking even at 8 weeks post op, I would never get my life back. I was off work for 3 months. I've been back at work full time (working in a children's hospital) for 3 weeks now. Other than being extremely tired at night, I've been able to resume my normal activities. I plan to run/walk a 5K in 3 weeks. It may be a lofty goal, but I'm going to give it my best try. I was told it would take my body a year to fully recover, and I absolutely believe that. My lung still feels "strange", my back aches at the incision site and I have that tightness at the bottom of my ribs from the chest tube. While I may never be pain free, I'm so much farther than I was before all this started and miles from where I was weeks post surgery. I craved information about this surgery and recovery. I searched the internet on the many nights I couldn't sleep due to the pain. Everything I read was so discouraging. I think it's important to get the good stories out there along with the unfortunately no so good stories. While I would never minimalize someone's pain, (I've been there) I would like to give hope to those either preparing for this surgery or just recovering that in some cases, you can get your life back.
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ctbeth responded:
Hello Sharon,

What a lovely discussion you've begun.
I am glad that you're doing so well.

Please do understand that many of us live with disorders, diseases, or injuries that cannot be fixed by surgery.

I have had many surgeries- over ten in the past seven years- with no hope that in a full year I'll recover to return to my job and my former athletic goals..

This is the difference between acute and chronic pain:

Acute pain is of short duration, like an injury that will heal, or post-op pain. You had surgery that caused pain and, with time, this pain diminished with the expectation that you'd be recovered by a year's time.

Your pain has reduced to discomfort probably because your body was healing at a natural pace, so the caffeine and sugar being cut from your diet probably was not as significant as time naturally healing your surgery discomfort.

Me, and others like me, experience chronic pain. Again, we may have surgeries like mine- to stabilize my broken bones, fuse our spines (I have multi-level cervical and lumbar fusions both). or to surgically implant neuro-modulation systems to treat intolerable pain: to make our hell a little-less intolerable.

I am an RN and I would love to go back to work. I am permanently and totally disabled. I was also an athlete and ran nine miles the morning of my accident in training for a half marathon.

The difference between me, and others who live with chronic pain, is that we will not get better, Our pain will not get better the longer we are from surgery.

I am preparing for a surgery, but have no unrealistic expectations that I'll, "get my life back". I do have a life, but a life a whole lot different than the life I had before.

While it is wonderful that you've recovered well after surgery, and that post op pain can be bothersome, and that you're planning to walk/ run a 5K race at sixteen weeks post-op, but you are healing and going to get better and return to the life you had pre-op.

For many of us this as not a possibility.

Good luck and best wishes,

CTB
 
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Onehurtguy replied to ctbeth's response:
I agree with Beth, it is refreshing to here a success story, as most of what's posted here are people going through multiple levels of hell.

As for chronic pain, I'm with CTB, in the same boat anyways... Once in a while I may get some relief here and there, most of which I think is just me convincing myself that it doesn't hurt that much. It always returns unfortunately.

Fortunately I have a beautiful wife and four nearly grown kids to motivate me. Without them, I'd probably just give up and succumb to the pain, as the Good Lord knows, I've had far more than my fair share...

Anyways, talking about horror stories... My bad!

Stay strong, take it easy on your body so you will continue to heal, and enjoy what you've got, I just takes a micro second for everything to dramatically change.

Peace,

R
 
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ctbeth replied to Onehurtguy's response:
Mr R,

That micro-second, or nano-second, I now call:

~THE BIG BANG~

It's nearly a miracle that the both of us are alive.
I would, when and if you wish, like to hear more about your MV vs human accident.

Still, all things considered (Hey, I have four children, too!), I have a good life, a fine life.

No more running. No more hospital RN, no more awakening in the mornings and feeling no pain (ever).

Many times I do not want to fall asleep at night because I know that the next sensation I'm to feel upon consciousness will be knives in my back.

Still, it's a more quiet life than I had heretofore imagined I'd want, but it's a good life and I have learned what is truly important. The rest is just noise.

Take care,

Bet
 
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IsSharonHome replied to ctbeth's response:
I would never want to minimize anyone's pain and I did not mean to imply that. I know people who are living with chronic pain, so I try hard not to complain about anything I've been through. My wish was to offer some hope to those like myself. People having this surgery for whatever reason. Like I stated previously, I craved information, some kind of timeline for healing. I know now that I may have this nerve pain for a year or more. I know that Neurontin for me is a good option. I know when I have caffeine or sugar I feel like those nerves are on fire. I'm thankful it's not worse than that. I guess I just want someone to be able to google thoracotomy and not read all the terrifying things I read. Sometimes I think there are good endings, but because people feel better, they never return to a message board to tell their success story.
 
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RefrigerateAfterOpening responded:
Thanks IsSharonHome, I've got the same op coming up pretty soon, this is about the only positive thing I've seen about it on the whole internet.
 
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IsSharonHome replied to RefrigerateAfterOpening's response:
Refrigerate,
I hope your surgery will go/went well. You were my target audience when I decided to post on this site. After my surgery, everything I read was so discouraging. I was in pain and the internet only left me feeling hopeless. I am a "glass 1/2 full" person, but after hours of reading and re-reading about the after effects of a thoracotomy, I was beginning to think my life would be worth very little post surgery.
To date, I am 10 months post surgery. I currently see a pain management specialist who combines nerve injections (periodically) with 600 mg daily of Grilease. This is the time released gabapentin. I live a very normal life now. I do have pain everyday, but it is minimal. It is not debilitating nor does it stop me from doing the things I want to do. I know my limitations and respect them. I am weaker on my surgery side and have a diminished range of motion in my right shoulder (I'm probably at about 85%). Damp weather seems to increase the pain and like I mentioned earlier, I personally notice a difference when I consume caffeine or sugar.
I work full time in a children's hospital, workout 3 times a week, am active in my church (never doubt the power of hundreds of prayers on your behalf), and spend numerous hours running and playing with my 3 year old grandson. I travel and enjoy all the things I enjoyed before my surgery. I may take things a little slower and tire a little more easily, but I'm okay with that. I'm alive and healthy!
The first 3 months are definitely the hardest and you will have days that you want to give up. Just remind yourself that it will get better and there will be really bad times, before the good days start coming. It seemed like each new week brought some new pain for at least the first 8 weeks. It was around the 9th week that I realized I was going to be okay. One of the physicians I work with had been through the surgery 10 years before and was a huge encouragement to me. She also sees a pain management specialist and is doing remarkably well.
Like I said previously, I think there are a lot of success stories out there, but it's very easy to forget these boards if you are able to return to a normal or close to normal life.
Please let me know how you're doing. If you would like to email me and ask specific questions or would just like some encouragement/suggestions, just let me know and I'll give you my email address. I wish you the best!


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