Looking For Info on Nerve Healing after Pnuemonectomy

[DougS]

Hi All,

I had surgery on 3/1803 for a lobectomy, but 2 days later the surgeons said there where smal small nests of cancer cells on the end of the bronchial tube they cut and they thought they better go back in and take it all. So they did a complete left lung removal on 3/20/03. I have found info on this board about the stomach trouble most of us have and the shifting of the organs that happens. Now about my nerve pain. I am still on percoset 1/2 pill every 4 hours or so. When I try to stretch that out to 8 or more the pain that i get I believe is from the nerve damage from the operation. It starts under the left should blade and goes around to the front of the chest in about a four inch band. They took 2 pieces of ribs out and put in gortex in the back area and that is where the pain starts and comes to the front. I would like to know if anybody has had this problem and if there is any thing I can do to help alleviate the pain. Such as excersize and or accupunture or something. Or is it just going to take longer before it goes away or maybe it does not go away. Any info would be appreciated.

DougS

God Bless You ALL

[bobmc]

Hi Doug;

I think we have spoken in the past on the same subject. Seems were both in the same boat. My pain has been getting progressively worse over the last 2 months and the strange thing is that I was operated on May 2 / 2001.

I'm on celebrex and ultracet ( a mild opium based prod. ) right now and it's helping some but really screwing up my stomach. It's also the 3rd scrip I've had from my GP in the last 3 weeks and I'm about fed up. I'm also somewhat of a zombie at work and my boss says I should consider disability and yes I'm thinking about it. So where does it all lead ????

My next move is to seek help at a regional pain center. It was suggested by my company nurse, she said a nerve block may help. Kinda makes sense though " when in pain see the pain docs". Like you, I was also considering accupuncture as I have heard this does work. But hav'nt done it yet. Although, I have had massages and they are helpful, at least in the short term.

I also had a bone scan done 2 weeks ago and the results were good and have had ct scans of the head, chest and abdomen done last week and am anxiously waiting for the results. But again I also think my problem is nerve damage and shifting organs. I also got to get off the opium based stuff, it rips me up. Guess, I really did'nt help ya except to know your not alone in this and I will send you a PM if I find any solutions.

Good luck and lets stay connected, also hope your follow-ups are more than an x-ray,

God bless and be well

Bobmc- NSCLC- stage IIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

[JudyB]

Doug,

I had lots of pain after my surgery, and the general belief was that I had Post Thoracic Pain Syndrome, which is similar to Phantom Limb and can last indefinitely. As it turned out, that diagnosis was incorrect. What I had was the remaining cancer cells were busy eating thru my vertebrae and forming a new tumor in my spinal cord!

I don't want to scare you, but I'd suggest an MRI. I had CT scans every 3 months that didn't pick up what was happening. In fact, just 3 weeks before I had emergency neurosurgery, a CT showed I was NED!!!!!!

Back pain in LC patients should ALWAYS be evaluated for a spinal tumor, as it is very common!!!

Let us know!!

JudyB

[Debi]

First, I want to stress that I agree 100% with what Judy says...I know from posts what she has gone through and everyone needs to be sure that the pain is not from a reoccurence.

That said, this is what my surgeon told me after my surgery. Since there are so many nerves cut through during this type of surgery, pain will continue for quite awhile. He only gave me pain pills for up to 2 weeks post surgery. He explains it like this, kinda like Judy wrote ..the Phantom Limb pain...

In the months after surgery, your nerves send impulses to your brain continuously saying that there is something wrong..help..something wrong (that would be my nerve talking). Its kind of like banging your finger on the edge of a table for hours. It starts off hurting, gets real painful BUT if you keep doing it, eventually it stops. In the same way after surgery, the brain starts ignoring the impulse that the nerve is sending. (Probably the same theory why people can sometimes cut off their own arms and stuff and feel no pain). That is how my surgeon explained it..finally after daily pain, the brain says to the nerve..okay..I'm done..I'm sick of you and stops responding with pain.

In other words, what my surgeon said was he would only give me pain pills for 2 weeks after the hospital because otherwise he would have to give them to me indefinitely since I just had to get through the part and come out at the other end. He told me that chances are the pain of the nerve damage would never stop...my brain would just have to learn to ignore it.

Anyway, I don't have pain anymore and haven't for a long time. I am numb, and uncomfortable at times...but no pain. Again, I would definitely have tests done to make sure all is well...but it is possible that my surgeon was actually right....go figure!!!

[luvmydog2]

I too have this pain in my side and back area. Got a question for all of you. Does it feel like heartburn. Does the pain burn around your incesion. My onc dr can't seem to understand what I am calling pain. I do take a rolaid and it stops but I really don't think it is heartburn in my BACK. Can anyone shed some light and help me explain this to my onc? (Had surgry in 6/03)

Bruce

[David A]

HI, My sister works in a pain clininc and said there are a lot of patients they see with post thoracic pain syndrome, althought the surgeon don't like to see this, but mine told me they could block some of the pain with a minor surgery, but that was before my reoccurance so I'm being treated with pain killers for now. I would slaso suggest an MRI, I had one a feew weeks ago not the most pleasant procedure but it ruled out cancer in my spine, and gave a direction to go in for my shoulder pain.

Best of luck to all . CANCER SUCKS!

[mhutch1366]

I had posted somewhat recently on this, I think.

Anyway,

I had cancer eat through 5 ribs and start on my vetebrae. The tumor extended from my neck through my chest wall to my spine through one lobe of lung. The radiation/chemo killed it, and it was removed,I had a lobectomy and a thorocotomy where my chest wall was rebuilt with goretex. Lost my collarbone, and the use of my left arm for almost a year. The surgery had to dissect tumor away from major blood and nerves in the front behind my collarbone up to my ear. This caused some new damage of its own.

I got 'down' to taking 30 mg morphine sulfate extended release, and 50 mg vioxx daily. I have a curve in my neck, and last fall that started causing a lot of pain, had new scans that ruled out tumor recurrence, neurologist believes it is compression on the nerve at c4-c5? I think but he can't say much more, because of the nerves cut during surgery left me with numb patches/areas. I was prescribed neurontin for nerve pain additionally, at that time.

The numbness and pain I believe will be with me always, but if I am going to function I need to get relief from the pain. It's almost the end of the third year now. I don't see any changes or relief in sight. But, I am self supporting and raising a child, so I consider it a decent trade off.

I had a pancoast tumor originally, which is one of the most painful types, and at the time I was diagnosed I was taking almost 8 grams of ibuprofen a day, and it barely sufficed. Slept on a heating pad every night for over a year, and still couldn't sleep more than a couple hours.

So, no, the pain doesn't always go away. The numbness doesn't always go away either. Given the pain prediagnosis, and the size of the tumor, and the fact I am functioning today in relative ease with small pain, moderate numbness, scoliosis, and no evidence of disease is a miracle. If it costs me reliance on medications, then so be it. It is not a perfect world.

I'm thankful anyway.

Good luck to you all.

MaryAnn