Increasing pain over time after Video Assisted Thoracic Surgery

Posted by vic83 @vic83, Oct 18, 2022

I am wondering if anyone has had a similar experience. I had VAT surgery end December 2021 with wedge resection in right upper lobe. They removed a 3.1cm cancer stage 1b. I was off pain meds in five days. For two + months I had usual nerve pain under right rib. But it did go away. Then weeks later I noticed a slight soreness when I took a deep breath. Slowly this increased. My Pulmonologist said there was nothing on the CT scan to indicate a problem. But the pain has slowly increased and now after 9+ months it is a pain behind the breast which I certainly notice when I take a deep breath. My last CT scan was end October, but Pulmonologist made no comments Three days ago I started to have a pain on the right side below rib cage(not related to breathing). I can only see my Primary Care Physician next week and nurse triage said go to Urgent care to get things started. I am leaving for Europe in three weeks for a month and I sure do not want to have problems. Does such pain just come with thoracic surgery ???

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Hi @vic83, I'm sorry to hear that you're experiencing pain and that it is getting worse, not better. I'm tagging fellow members like @corgimenow @aksinspringfield @stanleykent @deljr who also had video assisted thoracic surgery (VATS). Perhaps someone has had a similar experience.

Did you decide to go to urgent care?

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Thanks for positioning my question. Yes, I did go to Urgent care (at 5:30am this morning when nobody there!!!) My Urgent Care is also Emergency Room capable, so they did blood work, flu test (No Covid test since I had in August), EKG and CT scan with contrast for PE and from neck to groin. There is nothing that could be a problem, just some fluid in lung. But with previous VAT surgery that is to be expected. They want me to follow up with my Pulmonologist at Mayo who knows my background before leaving on my trip. I am waiting for his call back. He can decide about any treatment and if lung needs to be drained or not (my guess is NO..as that is a risky thing to do).
Mayo is two hours away and people here go there for the serious stuff, but obviously one needs a Primary Care Provider close by. Coordination of tests and care can be challenging, because symptoms happen that may or may not be related to a condition being treated at Mayo. Who to call first?
I do wonder why my deep breath pain severity has increased in the last 6 months, so look forward to hearing about the experience of others

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@vic83

Thanks for positioning my question. Yes, I did go to Urgent care (at 5:30am this morning when nobody there!!!) My Urgent Care is also Emergency Room capable, so they did blood work, flu test (No Covid test since I had in August), EKG and CT scan with contrast for PE and from neck to groin. There is nothing that could be a problem, just some fluid in lung. But with previous VAT surgery that is to be expected. They want me to follow up with my Pulmonologist at Mayo who knows my background before leaving on my trip. I am waiting for his call back. He can decide about any treatment and if lung needs to be drained or not (my guess is NO..as that is a risky thing to do).
Mayo is two hours away and people here go there for the serious stuff, but obviously one needs a Primary Care Provider close by. Coordination of tests and care can be challenging, because symptoms happen that may or may not be related to a condition being treated at Mayo. Who to call first?
I do wonder why my deep breath pain severity has increased in the last 6 months, so look forward to hearing about the experience of others

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Vic. Your pain on taking a deep breath sounds very similar to my experiences. I had VATS wedge last November After this surgery I had a broad spectrum of different pains that gradually get better in the healing process. In April, I don't remember if I specifically had deep
breathing pain at that time, but my follow up CT in April had a bit more chest fluid (pleural effusion) than thought normal and had it removed and tested. The tests showed my lymphoma in the fluid, but unsure if the fluid was caused by the lymphoma. Follow up in June was scheduled and near that time I had bad chest pain on a deep breath and and they tested for PE but found additional fluid and removed it. I think my deep breath pain was a result of the additional chest fluid building up. Chest fluid can be caused by many things. They decided mine was the lymphoma and received treatment for lymphoma. My breathing is fine now or should I say, back to my new normal. I go back in November for CT and blood work. Your Mayo Dr. will need to evaluate the recent CT and proceed from there.
Fluid removal (Thoracentesis) was not bad. Hope this helps.

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@stanleykent

Vic. Your pain on taking a deep breath sounds very similar to my experiences. I had VATS wedge last November After this surgery I had a broad spectrum of different pains that gradually get better in the healing process. In April, I don't remember if I specifically had deep
breathing pain at that time, but my follow up CT in April had a bit more chest fluid (pleural effusion) than thought normal and had it removed and tested. The tests showed my lymphoma in the fluid, but unsure if the fluid was caused by the lymphoma. Follow up in June was scheduled and near that time I had bad chest pain on a deep breath and and they tested for PE but found additional fluid and removed it. I think my deep breath pain was a result of the additional chest fluid building up. Chest fluid can be caused by many things. They decided mine was the lymphoma and received treatment for lymphoma. My breathing is fine now or should I say, back to my new normal. I go back in November for CT and blood work. Your Mayo Dr. will need to evaluate the recent CT and proceed from there.
Fluid removal (Thoracentesis) was not bad. Hope this helps.

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Thank you so much for your prompt reply StanKent. It is very informative. I have multifocal adenocarcinoma and lymph nodes OK for now. They were initially enlarged after surgery. But my CT scans find all kinds of other stuff, scarring, inflammation, interstitial disease.
But I have now had an interesting development. Last night I realized I felt good and this morning I woke up with little side pain and my deep breath pain is much improved. I knew that yesterday morning they gave me BENADRYL 50 mg injection and methylPREDNISolone 125 mg injection before doing the CT scan with contrast. I once had hives from contrast, so I always pre-medicate and then have no issues. Now a sudden side pain that goes away suddenly may not be unusual, but a long developing deep breath pain to decrease suddenly would seem unusual. I wonder if the dose of steroids helped.
The CT is locally done and not Mayo so not very deep on lungs but shows I have no other issues which is good. It is a challenge to coordinate testing between institutions. They can't compare to past results.

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@vic83

Thank you so much for your prompt reply StanKent. It is very informative. I have multifocal adenocarcinoma and lymph nodes OK for now. They were initially enlarged after surgery. But my CT scans find all kinds of other stuff, scarring, inflammation, interstitial disease.
But I have now had an interesting development. Last night I realized I felt good and this morning I woke up with little side pain and my deep breath pain is much improved. I knew that yesterday morning they gave me BENADRYL 50 mg injection and methylPREDNISolone 125 mg injection before doing the CT scan with contrast. I once had hives from contrast, so I always pre-medicate and then have no issues. Now a sudden side pain that goes away suddenly may not be unusual, but a long developing deep breath pain to decrease suddenly would seem unusual. I wonder if the dose of steroids helped.
The CT is locally done and not Mayo so not very deep on lungs but shows I have no other issues which is good. It is a challenge to coordinate testing between institutions. They can't compare to past results.

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If I recall correctly, my deep breath pain was severe for only a couple days and was milder before and after. I don't know why but think once the lung became accustomed to the extra fluid it hurt less, or maybe the amount fluctuates. Once fluid was removed it felt much better.
For you. too bad the records and images are not totally available to either location. Seems all my routine Allina stuff can be seen on my Mayo portal. Can't remember if my Allina doctor could see my Mayo CT . Anyway, he looked at a Mayo radiology report.
I'm not sure how that all happens but was surprised at what is all on the Mayo portal. ( even my local Walgreens covid booster shows up in their portal)
At one point, I asked Mayo for CT images and they gave me a CD. Diagnostic medical imaging studies are stored and viewed in a specific format called DICOM. Files sizes are really huge and are not as easy to download through the web.

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@stanleykent

If I recall correctly, my deep breath pain was severe for only a couple days and was milder before and after. I don't know why but think once the lung became accustomed to the extra fluid it hurt less, or maybe the amount fluctuates. Once fluid was removed it felt much better.
For you. too bad the records and images are not totally available to either location. Seems all my routine Allina stuff can be seen on my Mayo portal. Can't remember if my Allina doctor could see my Mayo CT . Anyway, he looked at a Mayo radiology report.
I'm not sure how that all happens but was surprised at what is all on the Mayo portal. ( even my local Walgreens covid booster shows up in their portal)
At one point, I asked Mayo for CT images and they gave me a CD. Diagnostic medical imaging studies are stored and viewed in a specific format called DICOM. Files sizes are really huge and are not as easy to download through the web.

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Your deep breath pain history is interesting to know. I am still better and just had a walk to test myself. I know I have shortness of breath under exertion, but I can walk normally just fine. I am leaving in 18 days for a month. It is just the airplane trip stress otherwise I will be comfortable staying with friends in Italy
I am at Allina too and have connected MyChart Allina to Mayo. From what I understand, Doctors use EPIC system, and it depends how it is set up. And they have to specifically look for reports. Also, Mayo wants actual scans and x-rays.
The Covid vaccine and test information I understand is sent to the Minnesota database so other medical institutions have access to it. In fact, when I had Covid in August, Mayo called me to offer me treatment because I was a Mayo patient, and they had scored me as high risk.
I had VAT surgery with cancer removed last December and then had cardiac stent done in April. Therefore, I was on Plavix and could not take Paxlovid and needed alternative treatment which Mayo provided promptly.

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@stanleykent

If I recall correctly, my deep breath pain was severe for only a couple days and was milder before and after. I don't know why but think once the lung became accustomed to the extra fluid it hurt less, or maybe the amount fluctuates. Once fluid was removed it felt much better.
For you. too bad the records and images are not totally available to either location. Seems all my routine Allina stuff can be seen on my Mayo portal. Can't remember if my Allina doctor could see my Mayo CT . Anyway, he looked at a Mayo radiology report.
I'm not sure how that all happens but was surprised at what is all on the Mayo portal. ( even my local Walgreens covid booster shows up in their portal)
At one point, I asked Mayo for CT images and they gave me a CD. Diagnostic medical imaging studies are stored and viewed in a specific format called DICOM. Files sizes are really huge and are not as easy to download through the web.

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Hi StanKent - well here is an update.
Your deep breath info is correct diagnosis "Pleural Effusion" . So I should change the topic to " Lung Pleural Effusion after surgery"
I talked to Mayo Pulmonologist on Friday but I had no pain at the time so he thought it would resolve itself. (I experienced three days of no pain following the injection of methylPREDNISolone in the ER at time CT scan to avoid reaction to the contrast).
But naturally on Saturday the pain started again right side and in the right lung (the first jab was like an electric bolt). So, I am careful how I breathe and move. It was maybe worse the first day and sometimes in the morning. But I am tired and have increased shortness of breath. Today I saw my Primary who ran some inflammation marker tests (ESR and CRP) and they came back elevated. He referred me back to my Mayo Pulmonologist. Getting his attention is not easy so I have to wait. I have given up hope of going on my trip. The travel is always 22 hours door to door and one has to be in good form. I felt incredibly good the night after the methyLPREDNISolone so I realize I am not in good form now

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@vic83

Hi StanKent - well here is an update.
Your deep breath info is correct diagnosis "Pleural Effusion" . So I should change the topic to " Lung Pleural Effusion after surgery"
I talked to Mayo Pulmonologist on Friday but I had no pain at the time so he thought it would resolve itself. (I experienced three days of no pain following the injection of methylPREDNISolone in the ER at time CT scan to avoid reaction to the contrast).
But naturally on Saturday the pain started again right side and in the right lung (the first jab was like an electric bolt). So, I am careful how I breathe and move. It was maybe worse the first day and sometimes in the morning. But I am tired and have increased shortness of breath. Today I saw my Primary who ran some inflammation marker tests (ESR and CRP) and they came back elevated. He referred me back to my Mayo Pulmonologist. Getting his attention is not easy so I have to wait. I have given up hope of going on my trip. The travel is always 22 hours door to door and one has to be in good form. I felt incredibly good the night after the methyLPREDNISolone so I realize I am not in good form now

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Vic, Interesting. I expect the Mayo Pulmononolgist will want to see a CT and make a decision from there. In my case they scheduled the thoracentesis a couple days after they saw the CT. Then they did a lot of lab tests on the fluid and took about a week for all of them to be completed. Hopefully the test results will help determine the cause of the fluid and then they can, hopefully, treat accordingly. Contact your Mayo team again and describe your shortness of breath and deep breath pain. Good Luck

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@stanleykent

Vic, Interesting. I expect the Mayo Pulmononolgist will want to see a CT and make a decision from there. In my case they scheduled the thoracentesis a couple days after they saw the CT. Then they did a lot of lab tests on the fluid and took about a week for all of them to be completed. Hopefully the test results will help determine the cause of the fluid and then they can, hopefully, treat accordingly. Contact your Mayo team again and describe your shortness of breath and deep breath pain. Good Luck

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Thanks. Yes, Pulmonologist has the CT scan identifying pleurisy - I had ER send actual scan because I know Mayo wants original scans - also for comparison for my future CT scan comparison. I talked to him today and because I had had a sudden inflammation of the hands (painful!) four months back, he is sending me back to the rheumatologist in case I have a developing autoimmune disorder (those impact lungs too) - and he is available to discuss it with that guy. My CT scans always talk about a lot of stuff in my lungs. No talk yet of draining, will see if it resolves or they can find something else first.
Amazing, now Mayo is getting my stuff from Allina. So they had my blood work for him to look at.

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@stanleykent

Vic, Interesting. I expect the Mayo Pulmononolgist will want to see a CT and make a decision from there. In my case they scheduled the thoracentesis a couple days after they saw the CT. Then they did a lot of lab tests on the fluid and took about a week for all of them to be completed. Hopefully the test results will help determine the cause of the fluid and then they can, hopefully, treat accordingly. Contact your Mayo team again and describe your shortness of breath and deep breath pain. Good Luck

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For curiosity did they do your thoracentesis in the office (Gonda?) or at the hospital? What specialist actually performed it?

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