September 24, 2020 at 11:35 pm #25635MarshaParticipant
<p style=”text-align: left;”>Aloha-</p>
i am over two years post thoracotomy for diagnosis if IPF. I am still having extremely strong, painful spasms at the incision under my breast. Most times these spasms occur when I bend forward to tie my shoes or pick up something off the floor. It is like a tight squeezing feeling that makes me clutch my chest, sit down and try not to scream out. I feel like the episode may last 30 seconds with lingering tenderness for the rest of the day.
I’m wondering if anyone else has a similar problem. I seem to have stumped my doctors. I’d appreciate any advise or information anyone can give me.
I enjoy reading everyone’s posts and getting to know others with the same challenges as me. Thank you for your time!
September 25, 2020 at 9:57 am #25637Charlene MarshallKeymaster
Thanks so much for your note, though so sorry you’re dealing with this side effect two years later! While I haven’t had that incision, I do have other scars that remain tender even years later. It sometimes feels like the scar itself is sore, and other times it feels like its muscular. I wonder if those who have had a transplant feel this with their scar… @mark-koziol , do you experience this?
September 25, 2020 at 7:36 pm #25642Mark KoziolKeymaster
Hello Marsha and Charlene! Marsha I’m sorry to hear your pain issues. Marsha have you spoken to your doctor or even surgeon about your issues. I have had a lung biopsy and lung transplant. Fortunately I have not experienced the pain you have mentioned. I’m thinking maybe a nerve was nicked or something to that effect. On the other hand I have been fortunate to be under the knife of two of the best thoracic surgeons in the world. I wish I could help alleviate your pain somehow, it’s unfortunate you have to go through this. Take care, mark.
September 26, 2020 at 9:14 am #25643john stylesParticipant
That is the issue with the lung biopsy, sometimes turning into a thoracotomy, I had a biopsy December 2017 that turned into a thoracotomy, I still have the numbness and tingling under my right breast and the surgeon went in thru my back, either it is not as bad or I have become use to the sensation . My numbness is not as bad as what you describe. I have muscle spasm’s in my legs, and upper body and if I turn different directions it helps. Hope it inproves.
- This reply was modified 3 weeks, 2 days ago by Charlene Marshall. Reason: tagging
September 27, 2020 at 6:56 am #25653Wendy DirksParticipant
Hi, Marsha –
This isn’t particularly helpful, but I wanted to share with you that I have really painful muscle spasms under by breasts fairly frequently. I have never had any surgery of any kind there although I broke my ribs several years ago. I also get terrible spasms starting in my mid-back that radiate around under my arm and end under my breast. I thought these were just the result of my frequent coughing. I carry my oxygen in a backpack and that causes some muscle pain as well. I wish there were a way to stop these but other than stretching, I’m not sure how.
September 28, 2020 at 5:58 pm #25659Susan HowittParticipant
I wrote several months ago about the sudden and some times very painful muscle spasms (cramps) Many people wrote that they thought they were the only ones to suffer like that, so seems to be a consequence of lung disease, the ones affecting the back are of course the worst as the muscles are very big there. My most common ones are over the ribs, almost seem to cut your breathe off and then suddenly go, mine are almost as if the cramped muscle slips off something and uncramps, it is that sudden. I don’t suffer problems from my back pack luckily. I agree, stretching does seem the only way to help ease most of the cramps, though I do push at some of them with my fingers trying to break up the knot, that some times seems to work.
Bien cordialement Sue
September 28, 2020 at 8:10 pm #25661MarshaParticipant
I’m so sorry to hear others also have these painful muscle spasms! Thank you for sharing! Those back spasms sound terrible, they all sound terrible! My muscle spasm feels like it could be related to my diaphragm but I’ve been told that’s not possible. I’m going to ask if what I’m feeling could possibly be nerve related, as was shared with me. I’m told I have a moderate hiatal hernia but I’m again told that would not cause spasms. Clearly the symptoms must be related to the incision site since that’s where I feel the sensation. I think the worst part is always feeling it in some way, numbness, tingling, pressure and heaviness then wondering when the next painful episode will start. I’m going to keep asking questions and I hope I can one day post something that will help others who deal with this strange symptom. I appreciate others sharing their stories with me! Stay well and keep smiling!
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