CHRONIC PAIN FOLLOWING LUNG REDUCTION SURGERY

wrin

GO TO A DOCTOR RIGHT NOW.

This could be a serious complication of your surgery. A chest x-ray can rule out most things serious. But this is NOT NORMAL and you should not put up with it.

It could be a problem with your pleura (the membrane around your lungs) rubbing together on scar tissue, or it could be a collection of fluid within your pleura. Neither of these conditions are healthy, the latter requires a drain to be put in.

Have you been to see a doctor about these? Does anybody other than you know about them? When was your last chest xray?

rf

I too had the vats done in Jan 2003. Since then I have had almost the same types of problems and pain. The doctors have been treating me with oxycontin until the last three or four weeks. It did not help much as time went on. It just dulled the pain. I got the feeling that the interns did not believe what I was going through. I went back today, as I could not deal with the pain anymore. I seen a new doctor and he seemed to undestand. He seems to think I have nerve damage to the area under my rib cage. He has started me on the drug Neurontin 300 mg 3x a day. He wants to see me again in a week. If this does not help he thinks some sort of injection or block will need to be done. I do not know what to expect from the Neurontin ! I do have a little hope now that some one does not think this is all in my head. I hope you get the help you need, I feel I know just what you are going through.

lacydoll

Dear Val,
You are the first person in 4 years that has nearly the same symptoms I have had.I had a small spot taken off the tip of my left lung 4 years ago in June. It was benign. Two weeks after my surgery, I started getting a "raw sore" pressure feeling internally and externally. I can not stand to be touched. I can do nothing and for the first 3 years I was sent from doc to doc to experiment.The pressure is unbearable and I don't think most of the docs even think I have all this but they label me as disabled and in chronic pain. They have tried all meds and the neurontin I think made me the worst. I think I had sort of a spell in taking 3800 mg a day of it and loss the use of my legs for a day. Was as if I had some kind of spell.
I begged the thoractic doc to see me two weeks after surgery, but he said I needed a diff kind of doc. I went from one to another, and had 9 nerve blocks, which done no good.Last Aug ,,out of desperation, I went to a medical school in Portland Oregon, 300 miles from us and had a Laminectomy,back surgery, T4 through T 9 , which only made me worse.He said he removed damage from the first surgery. Now I can't even lay on my back and I burn and sting and have pressure non stop .I am now on Methedone, which only reduces a small amount of the sore feeling. Nothing stops the pain.I can't get a doc in my area to take all this as serious because they thought I was going to sue the first doc.It is so terrible to not have any kind of life as I had known it. I was very healthy for all those years and I do know if I would not have had the surgery, I would have been ok but I was scared of cancer. No more surgery for me. The docs claim they think I have nerve damage or scar tissue,,but who nows, they won't even see me.My mental test says this pain is very real and I don't imagine it. I can't believe what they put a person through. I sure know what you mean and you explained my symptoms better than I could have.
Arlene

kucharski

I, too, have had the same problems. I had a thoracotomy and lung resection done. I have been through seven nerve blocks. The two year anniversary of my surgery will be here on June 1. Boy, do I have memories! I loved my surgeon though, and if I ever had a need for another surgery (heaven forbid), he would be my choice of surgeons. Well, the only thing that has helped my pain has been the neurontin. At first, I wanted to give up on it because I was feeling sleepy and like a space cadet. Give the neurontin a chance before you give up on it. Your body will adjust to the side effects. I started with 100 mg. three times a day. That small amount was making me feel tired. I am now up to 2400 mg a day and my body lets me know when I have missed a dose. I don't know where I'd be without it. Also, if you have insurance, aske if you could try the Lidoderm 5% patch. This patch was made for people with pain from the shingles virus. It affects the same nerves. They are very expensive. They do provide a small amount of relief. They're worth a try!

Good luck!
Debbie

It is good to know there are people out there with the same problem!

lacydoll

Hi Debbie,
yes, I was told that not many people have this kind of problem as we have after this lung surgery.
It is so sad when you feel as though you have no life , as it was before surgery and if I had it to do again, I would take the chance that it was benign as it was.
This lung surgeon I had 4 years ago, I think was knife happy. For a spot less than an inch in size, he cut clear from my left breast around and clear up my back. Some docs later said they could not imagine why he done such a large incision.
The raw sore feeling and the burning pressure is what I can hardly stand, but nothing relieves it. They have tried everything in pain meds, and the only thing that eases some of the pressure is the Methedone.
I am so tired of sitting up to sleep in a hospital bed. After I had the Laminectomy for them to take out some of the damage last year, I could no longer lay on my back. It is as though I have a large ball inside my left back that is so sore inside and out.it never stops.
The real hard pressure makes the pain worse , then my blood pressure raises.
Yes I sure was surprised to see that others had this reaction to this surgery and I sure feel for them.
I wanted to be referred to one more nero before I give up, but my regular doc says he doesn't think I need any more docs, as they don't know what to do with me, or if this is from scar tissue or nerve damage, but he won't refer me and the doc I want to see needs a referral, so I am lost on this one. I know I need to find a primary care doc but can't in this valley.

lacydoll

Rf,
No one really knows just how we feel except the person feeling all of this. When some doc trys to tell you that it is all in your imagination, I really get frustrated.
I am so sore this AM and have such a hard pressure, but I am not a doc, so what do I do?
It looks as though many of you have been put on Neurontin, but I was on , up to 3800 mg and I had some sort of spell and I can't take it. I had been taking it for a few months.
Then there was all the nerve blocks , which did not help me at all. I think I had at least 9 of them and the longest relief I had was about 45 minutes.
Was any one with this prescribed anything else that helped?
arlene

kucharski

Arlene,
See if your doctor will prescribe some patches called Lidoderm 5%. They give me a small amount of relief without doping me up! Boy, I know the exact pain all you are speaking of. My surgery was a bit different. It was a biopsy, but because my lungs were so stiff with disease they could not get enough to biopsy. It wasn't supposed to be an open biopsy, but because of the difficulty, it ended up that way. I ended up being diagnosed with a disease called sarcoidosis. This pain is not as bad as it used to be because of the neurontin. Good luck!

Debbie

lacydoll

Thank you Debbie and thanks for the name of the patches. If my doc will ok them I will sure try them.The Methedone doesn't help my pain, just takes some of the soreness away, but very little .
Thanks again
I am so glad I found this board, as I think many are.

Val-ellie

Hi Debbie,
Many thanks for your mail.

I was prescribed a total of 3600mg of Neurontin daily which, like you left me feeling `unreal'& VERY tired. But sadly, unlike you, I did not (after 4 months) feel any better. Parevertebral nerve blocks (8 in total) sadly did not offer more than a few hours relief on the day of treatment either. My pain consultant did however convince me to try a TENS machine. I am attached to the said machine now on a 24 hours a day basis and in so doing, receive a level of relief that enables me to undertake normal every day tasks.
I am not by any means without pain, in fact quite the opposite but it does `scramble' the intensitity of the original pain and thus enables me to function to some degree of normality. I do however remain optimistic that new treatments & trials will be available in the not too distant future that will hopefully enable me to regain at least a samll percentage of the quality of life I had before the surgery.
Please keep in touch & let me know your progress.
Warmest regards,
Val

Val-ellie

Hi Debbie,
Many thanks for your mail.

I was prescribed a total of 3600mg of Neurontin daily which, like you left me feeling `unreal'& VERY tired. But sadly, unlike you, I did not (after 4 months) feel any better. Parevertebral nerve blocks (8 in total) sadly did not offer more than a few hours relief on the day of treatment either. My pain consultant did however convince me to try a TENS machine. I am attached to the said machine now on a 24 hours a day basis and in so doing, receive a level of relief that enables me to undertake normal every day tasks.
I am not by any means without pain, in fact quite the opposite but it does `scramble' the intensitity of the original pain and thus enables me to function to some degree of normality. I do however remain optimistic that new treatments & trials will be available in the not too distant future that will hopefully enable me to regain at least a samll percentage of the quality of life I had before the surgery.
Please keep in touch & let me know your progress.
Warmest regards,
Val

Val-ellie

Arlene,
I believe that I posted a lengthy reply to your mail but may have not done so correctly and as a consequence may have `lost' the reply mail before transmission. If you did not recive it please let me know & I will reply in full again.

In the meantime, my thoughts are with you & I thank you so VERT much for taking the time to write to me.

Kindest Regards
Val