Ongoing pain, nerve damage pain

Hello again! My last topic was regarding my loss of strength and stamina. It has been 11 weeks now since my upper right lobectomy and pain is still a major battle in my life. It seems to be getting better, then I am hit with excruciating, agonizing pain -- like last night.

To refresh the memory of those reading these posts -- I'm 60 years old, cancer removed, no chemo or other treatment, general good health otherwise.

When I came home from the hospital I had to take Lortab which I took about all day and at night. Now I'm on Neuronton/gabapentin, and take Lortab as needed, usually only at bedtime.

Last evening I started being in pain around 6 pm. Tried to avoid Lortab so I took ibuprofen, which did NOTHING. My 9pm I was lying in my bed crying the pain was so bad.

I hadn't done anything weird; I don't do anything outlandish. I dread getting up in the morning because I know before the day is over I will have to deal with, at least, some level of pain.

The pulmonologist told me I'd be dealing with pain for at least six months, something I wasn't told beforehand. BTW, I'm already taking Neurontin and I've already been to the pain clinic

What did others of you have to deal with regarding pain? Thanks for your input. --Donna

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I am so sorry to read that you are in such horrible pain. But at the same time, I am delighted to hear that you are tumor free!!! That is something to be celebrated!

What about if you visit a neurologist? Maybe they have insulted the nerves in that area due to the surgery and a neurologist might know better what to do then a pulmonologist... Just an idea.

All the best, hope the pain gets better soon!

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Pleaes try lyrica or neurontin. Both are for nerve pain. Please try it. Neurontin helped my mother tremendously!

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Hi I am sort of in the same boat. I had breast cancer 5 years ago and had the nerve pain with that. In april of this year I had the same surgery that you had except I did not have the vats and my surgeon nicked an artery so my incision is very large since he had to get his hand in there to stop the bleeding. I do have the nerve pain much more now than with the breast cancer. I to take the gabapentin it does help not much it is better when I take the 3 a day as prescribed. I take 300 mg three times a day and my onc prescribed tropal or something like that it helps alot. My nerve pain is getting better sometimes I think or I am just getting use to it. Maybe yours will get better in time like mine did but I don't think it ever really goes away. Some days are certainly worse than others. Good luck hope this helps.

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Hello Donna and Blessings to you!
I am Blessed myself, as I am a 5 year SURVIVOR of NSCL cancer with a pancoast tumor that had invaded the first 3 posterior ribs. I had a right upper lobectomy with rib removal in June of 2008. My Life Saving Surgeon, approached for removal from the front. This was called a hemi-clamshell incision and did a thoracotomy. The incision runs from the top of the middle of my chest, down around the right breast, up under my right side, ending just under the right armpit. I myself absolutely experienced pain similar to what you explain and was told I had post thoracotomy syndrome. These surgeries interfere with the brachial plexus and a whole host of nerves, plus any other structural issues in the location of each individual surgery, not to mention neuropathies induced by chemotherapy/ radiation treatments. I presented with what is called Pancoast syndrome, and with Gratitude for increasing survival rates in Lung Cancers across the board...Thanks be to God! There continues to be survivors out there living with a ride range of post cancer pain syndromes. I do have a pain specialist whom, again Thank God! has me on a good maintenance plan of Lyrica and a functional maintenance dose of pain meds for breakthrough pain.
I think the nerve endings repair themselves to a point, but never completely. It is like learning to live life all over again and learning the different pain triggers each of us uniquely have with our own individual cases. The cold weather in the winter is crippling for me and I have severe flares in the colder months, and just this year the heat and humidity just started to bother me. I have muscle spasms and the blood vessels constrict causing further discomfort at times. Also the heat triggers this strange uncontrolled sweating on one side only of my face and upper extremities. These syndrome tend to have traveled and this past February symptoms have traveled up to my right ear. I have neuropathy, ringing in my ear, extreme blockage and pressure along with significant sensory hearing loss. While I am truly Blessed and extremely Grateful to be alive, there are a number of us survivors out there, whom have after shocks of living life surviving a Cancer diagnosis, surgery and treatments. Hoping some of this also helps and networking with each other in support and learning from each others individual Cancer Journeys! God Bless Lisa E.

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