Hi, I had lower right lobe removed in October 25, it was for open surgery including rib spreading. My recovery was good for the first six weeks and then sudden pain began. I was diagnosed with post thoracic pain syndrome which I've never heard of. Unfortunately (or fortunately!) , I'm one of a group of 3 to 5% of people that get this severely which basically means that I have chronic nerve pain and an over sensitised system. I have episodes of rib, chest and back pain resulting in cramp like spasms along with regular guarding which in itself is very debilitating. Have yet to meet anybody on these groups that has also been diagnosed and would love to hear from you if you have. I am slowly making progress but it's good to share and understand ways to deal with the pain. TIA
Hello again Newsgirlcb46b3,
We corresponded briefly a few days ago on another forum and I'm sorry you've had no replies on this forum. I'm aware that your condition is rare and can only assume that, although your post has had 49 views, nobody has experience of it.
Because I was fortunate not to have suffered this condition following my surgery I was also unable to help you directly. I would guess you have already searched fairly thoroughly here for information but, if you haven't tried already, Macmillan's Ask a Nurse service might be able to help as well as the cancer surgery and cancer treatment forums.
Failing that, a couple of sites I have used for several years, the Roy Castle Lung Foundation and Healthunlocked might be a source of information.
Links to all of the above are below.
I do hope you can make progress soon on this debilitating problem.
Best wishes, Derek.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
