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CT scan

Posted by sharonp51 @sharonp51, Sep 4, 2020

Just wondering how often a CT scan is usually done. I have varying info from different doctors.

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judyhodgern | @judyhodgern | Sep 4, 2020

Most of the time my pulmonologist does a CT scan if there’s been a change in condition or medication or treatment and it’s been it last at least 2 to 3 months. If my informants are correct, I have read where CT scans are not as harmful as they used to be.

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Sue, Volunteer Mentor | @sueinmn | Sep 4, 2020

My docs suggest every 2 years or when there is a change that makes them think there is a flare. Judy is correct that new CT machines are much safer than the original.
Sue

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Sep 5, 2020

My doc wanted me to have a CT scan when this was diagnosed again for the second time. I decided not to have a CT scan. In the past two years I have had countless CT scans, MRIs and X-rays so I decided I would just do sputum tests every month. My first sputum in November came back positive in two days so I knew it was there. I started the Big 3 in March and my sputum test in July and August have both been negative.My doctor has said I have to finish the protocol for 12 more months. I was so disappointed but I will continue to do the 7% neb solution and the 3 and sputum tests every month. I do understand that the CT scans are safer but I will wait until the winter to do one since I have to finish the 18 month protocol anyway. If this seems not right to you, Sue, please let me know. I have learned so much from this group!

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Sue, Volunteer Mentor | @sueinmn | Sep 5, 2020
In reply to @bluesplashgirl "My doc wanted me to have a CT scan when this was diagnosed again for the..." + (show)
@bluesplashgirl

My doc wanted me to have a CT scan when this was diagnosed again for the second time. I decided not to have a CT scan. In the past two years I have had countless CT scans, MRIs and X-rays so I decided I would just do sputum tests every month. My first sputum in November came back positive in two days so I knew it was there. I started the Big 3 in March and my sputum test in July and August have both been negative.My doctor has said I have to finish the protocol for 12 more months. I was so disappointed but I will continue to do the 7% neb solution and the 3 and sputum tests every month. I do understand that the CT scans are safer but I will wait until the winter to do one since I have to finish the 18 month protocol anyway. If this seems not right to you, Sue, please let me know. I have learned so much from this group!

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Carolyn - I would say waiting to do your CT until you are ready to stop antibiotics is prudent - that way they can see if any cavities have resolved as well as the sputum samples testing negative.
Do you know if each sample is being sent for a full culture? It seems as if the one from August could not be back this quickly - MAC has to grow for 4-6 weeks to be detected in a culture. The rapid (AFB?) test is not necessarily definitive in detecting MAC.
Sue

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Sep 7, 2020

Hi Sue, They let me know if they detect anything right away and then the culture grows for 6-8 weeks for a final result. The first test last year came back positive in 2 days and then they continued to grow the culture and found Mycobacterium Nebraskense (sp?). It's nice to know that if it isn't completely gone at least it is very diminished! Thanks Sue! I hope you are well.

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