Share this:
amn17
@amn17

Posts: 24
Joined: Sep 14, 2018

Lobectomy, Cavitary lung lesion and VATS vs Thoracotomy

Posted by @amn17, Sun, Oct 14 5:31pm

I am in the process of getting a lung resection due to a cavity. I would like to hear about your experiences and tips regarding these surgeries. Risks, recovery, complications, and anything I should be mindful of during the surgery/recovery? And whether if its safe to not proceed with the surgery and leave the cavity? Thank you

REPLY

@amn17 I have a lung cavity too and will have the surgery this spring if antibiotics don’t close it. I am very interested in reading responses to your question. Thank you for bringing it up. I’d also love to hear from anyone who had a lung cavity that was closed with antibiotics used consistently over a 6 month period. Thanks!

Liked by amn17

@hydrang3a

@amn17 I have a lung cavity too and will have the surgery this spring if antibiotics don’t close it. I am very interested in reading responses to your question. Thank you for bringing it up. I’d also love to hear from anyone who had a lung cavity that was closed with antibiotics used consistently over a 6 month period. Thanks!

Jump to this post

@hydrang3a Thanks for your response. I can share my experience… I was on antibiotics for almost 2 years but not just they didn't help but the cavity got bigger and became a source for more infections and the cavity wall got thicker too. It depends on the cavity I assume, whether its localized and how big it is but I doubt if its bigger than 4cm for it to close by itself.
Where do you live? and how long after you were diagnosed they considered surgery for you? Thanks.

@amn17

@hydrang3a Thanks for your response. I can share my experience… I was on antibiotics for almost 2 years but not just they didn't help but the cavity got bigger and became a source for more infections and the cavity wall got thicker too. It depends on the cavity I assume, whether its localized and how big it is but I doubt if its bigger than 4cm for it to close by itself.
Where do you live? and how long after you were diagnosed they considered surgery for you? Thanks.

Jump to this post

@amn17…..I’m in Southwest Florida. Where are you? I don’t know how long I’ve had the cavity but it was 2.1 cm in June and 2.5 cm in Sept. I’ve been on antibiotics since June. There were massive infections around the cavity which have dissipated but the cavity as of yet has not been reduced. It is located near the lung exterior and laparoscopy is suggested if it continues to be drug resistant. When and where will you have your surgery? I will have mine at National Jewish Health in Denver. But again they want me to continue antibiotics for at least another 6 months maybe more.

@hydrang3a

@amn17…..I’m in Southwest Florida. Where are you? I don’t know how long I’ve had the cavity but it was 2.1 cm in June and 2.5 cm in Sept. I’ve been on antibiotics since June. There were massive infections around the cavity which have dissipated but the cavity as of yet has not been reduced. It is located near the lung exterior and laparoscopy is suggested if it continues to be drug resistant. When and where will you have your surgery? I will have mine at National Jewish Health in Denver. But again they want me to continue antibiotics for at least another 6 months maybe more.

Jump to this post

@hydrang3a I'm in Canada so our system is different here than states. We have public healthcare which is great but it can be slow and bad as well. I am waiting for surgery and still on antibiotics after 2 years with not much results! I am considering going to National Jewish Health because I'm afraid I'm not getting the proper care here and don't want to lose my lungs! Please let me know if you are happy with their service and doctors there at National Jewish and what the cost is like…. Sounds like they educate and inform you of your situation there in detail. That's not the case here unfortunately. Thanks.

I'd like to bring @tdrell into this discussion. She goes to National Jewish Health in Denver and may be able to share her experience with care there.

Liked by amn17

@hydrang3a

@amn17 I have a lung cavity too and will have the surgery this spring if antibiotics don’t close it. I am very interested in reading responses to your question. Thank you for bringing it up. I’d also love to hear from anyone who had a lung cavity that was closed with antibiotics used consistently over a 6 month period. Thanks!

Jump to this post

Hi @amn17 Are you on daily meds? I was on 3x week meds for 2 years without cavity closure, but when I changed to daily meds and Inhaled Amakacin they closed. All the best.

@heathert

Hi @amn17 Are you on daily meds? I was on 3x week meds for 2 years without cavity closure, but when I changed to daily meds and Inhaled Amakacin they closed. All the best.

Jump to this post

@heathert Yes I am on daily meds. Recently added clofazimine and Amikacin inhaled too.

@amn17…check out Njh website at nationaljewish.org…. you will find their phone numbers there as well as a way to communicate with them online if you don’t have a phone plan to call into USA. I have no idea what the cost of their care would be…..my guess is that it would not be unmanageable….payment could be worked out.if you read their history, they did not charge at all til after 1968.
The quality of care is superior….I should mention that although I am now 100% a consumer…..I was an active RN for 50 years in a number of settings and cities.
The advantage of seeing their Mycobacterium specialists is that they have seen thousands of clients with the condition….the same for radiologists who read your CAT scans….who by the way are certified in reading Thoracic CAT scans.
Their Labs are what is called a reference Lab….again specialized in culturing the NTM specimens.
The Surgeon who does ,mostly VAT lobectomies has done hundreds….With minimal issues.
They will not require you to automatically repeat tests…..if you bring them / have them sent….that helps with cost.
They will work with your local doctors…..for continuity of care.
They are thorough….although I was set up to be seen by the NTM specialists….they determined I needed to be seen by a pulmonologist also…on my initial visit there….that Dr in turn ordered a test to confirm the diagnosis I had had for 30 years…of Asthma. And I did not have Asthma.
They are constantly sharing the findings with you….very open communication.
They have annual workshops on NTM for Physicians then one day for Patients and family. You can watch these on you tube ….type in National jewish NTM workshops….they have not taped the past 2 years….but previous ones are on so you can see some of their doctors and other speakers.
Ask any other questions…Terri aka tdrell

@heathert

Hi @amn17 Are you on daily meds? I was on 3x week meds for 2 years without cavity closure, but when I changed to daily meds and Inhaled Amakacin they closed. All the best.

Jump to this post

@ heather…..Encouraged to hear from someone whose cavity closed. How long did it take? I’m on daily meds and inhaled amikacin and I am so encouraged by your response. Thank you! Now they have an improved version of inhaled amikacin made available earlier this month. Has anyone started using it?

@amn17

@hydrang3a I'm in Canada so our system is different here than states. We have public healthcare which is great but it can be slow and bad as well. I am waiting for surgery and still on antibiotics after 2 years with not much results! I am considering going to National Jewish Health because I'm afraid I'm not getting the proper care here and don't want to lose my lungs! Please let me know if you are happy with their service and doctors there at National Jewish and what the cost is like…. Sounds like they educate and inform you of your situation there in detail. That's not the case here unfortunately. Thanks.

Jump to this post

Amn17. Hi there…I’m from Toronto and you are so right about our health care system..We can only access 60 percent of drugs that Mayo gets…I to have a cavity app 1 1/2 centimetres and have been on the big 3 for 6 months. CT scan next month. hopefully cavity is smaller..what hospital are you at..I’m at St Mike’s and Toronto Western

@hydrang3a

@ heather…..Encouraged to hear from someone whose cavity closed. How long did it take? I’m on daily meds and inhaled amikacin and I am so encouraged by your response. Thank you! Now they have an improved version of inhaled amikacin made available earlier this month. Has anyone started using it?

Jump to this post

@hydrang3a The new Amakacin is the one I was on (I was in the trial for it). I was on the Amakacin and weekly meds for a year when my cavities closed, I was so thankful that I worked, after being on 3x weekly meds which diddnt do much at all for me. Not sure if it was the weekly meds or the Amikacin that did it(I feel it was the Amikacin as the 3x weekly meds diddnt do much), but the Inhaled Amikacin was so tolerable its worth a try.

@amn17

@heathert Yes I am on daily meds. Recently added clofazimine and Amikacin inhaled too.

Jump to this post

@amn17 I feel that it was the Amikacin that worked for me, as the 3x weekly meds did nothing much so why would the daily? I hope the Amikacin works for you, if you need any help with taking it dont hesiate to ask me. Please let us know how you go with your cavity.

@tdrell

@amn17…check out Njh website at nationaljewish.org…. you will find their phone numbers there as well as a way to communicate with them online if you don’t have a phone plan to call into USA. I have no idea what the cost of their care would be…..my guess is that it would not be unmanageable….payment could be worked out.if you read their history, they did not charge at all til after 1968.
The quality of care is superior….I should mention that although I am now 100% a consumer…..I was an active RN for 50 years in a number of settings and cities.
The advantage of seeing their Mycobacterium specialists is that they have seen thousands of clients with the condition….the same for radiologists who read your CAT scans….who by the way are certified in reading Thoracic CAT scans.
Their Labs are what is called a reference Lab….again specialized in culturing the NTM specimens.
The Surgeon who does ,mostly VAT lobectomies has done hundreds….With minimal issues.
They will not require you to automatically repeat tests…..if you bring them / have them sent….that helps with cost.
They will work with your local doctors…..for continuity of care.
They are thorough….although I was set up to be seen by the NTM specialists….they determined I needed to be seen by a pulmonologist also…on my initial visit there….that Dr in turn ordered a test to confirm the diagnosis I had had for 30 years…of Asthma. And I did not have Asthma.
They are constantly sharing the findings with you….very open communication.
They have annual workshops on NTM for Physicians then one day for Patients and family. You can watch these on you tube ….type in National jewish NTM workshops….they have not taped the past 2 years….but previous ones are on so you can see some of their doctors and other speakers.
Ask any other questions…Terri aka tdrell

Jump to this post

@tdrell Thank you so much for your response Terri. Helpful information. I'll keep you posted.

Liked by tdrell

@megan123

Amn17. Hi there…I’m from Toronto and you are so right about our health care system..We can only access 60 percent of drugs that Mayo gets…I to have a cavity app 1 1/2 centimetres and have been on the big 3 for 6 months. CT scan next month. hopefully cavity is smaller..what hospital are you at..I’m at St Mike’s and Toronto Western

Jump to this post

@megan123 Hi Jennifer, I'm in Vancouver. Things are handled differently here in BC however, I go to Vancouver General Hospital. My cavity is about 5cm so it has be removed by surgery. Too big to close on its own. When were you diagnosed?

@heathert

@amn17 I feel that it was the Amikacin that worked for me, as the 3x weekly meds did nothing much so why would the daily? I hope the Amikacin works for you, if you need any help with taking it dont hesiate to ask me. Please let us know how you go with your cavity.

Jump to this post

@heathert Thank you! I am using the inhale Amikacin and I agree its tolerable compare to IV. However I recently got a cold which made me more sick and now I have voice hoarseness and sore throat. Not sure if its the Amakacin or the cold. Have you ever experienced that?

Please login or register to post a reply.