Treatment for Coronary Total Occlusion(100% blockage)

Posted by caretakermom @caretakermom, Nov 2, 2020

Has anyone been treated for Coronary Total Occulsion(CTO) ? As I understand it, only a few centers in the U.S. have qualified staff to perform the procedure. Is this treatment available at any of the Mayo Clinics(Az, Fl, Mn)? Would like to hear thoughts from those who have considered or have had this treatment. Thank you!

Hi @caretakermom, I see you joined last year, but this is your first post! Welcome to Mayo Clinic Connect and thanks for joining in on the conversations. Mayo Clinic has one of the largest and most experienced cardiovascular practices in the United States and they do have very skilled physicians that work on patients with coronary total occlusion. Here are some of the physicians that specialize in the field. https://www.mayoclinic.org/tests-procedures/coronary-angioplasty/doctors-departments/pdc-20384762

I know that @thankful, @donnieg and @downhillbob have mentioned occlusion. I would like to invite them to the conversation.

@caretakermom, I notice your name and can't help but ask, are you caring for someone that has total occlusion or is this for yourself?

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@caretakermom, @amandaburnett – Amanda, I saw @caretakermom post and had meant to post but thank you for the added motivation.
My story was that I found out that I had a 100% occlusion only after suffering a HA. Even though I had been working out in a gym 3x a week and for the most part eating healthy, a glass of wine on an occasion and a non-smoker. Suffering through what is referred to as the Widow Maker I was very fortunate in that I choose to have my wife drive me up to the ER. That was a big mistake! Anyway, the best part of the story is that I'm still here!
My LAD (left anterior descending artery) was found to be 100% occluded and my cardiologist was able to install a stent to open it up.
I believe they told me that one other artery was at about 60% occluded, but not at a point that they would stent it.
@caretakermom I'm not 100% sure when you say Coronary Total Occlusion if you are referring to one artery or several?
Several of my earlier posts delve deeper into that story, but feel free to ask any more questions.
Jim @thankful

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@amandaburnett

Hi @caretakermom, I see you joined last year, but this is your first post! Welcome to Mayo Clinic Connect and thanks for joining in on the conversations. Mayo Clinic has one of the largest and most experienced cardiovascular practices in the United States and they do have very skilled physicians that work on patients with coronary total occlusion. Here are some of the physicians that specialize in the field. https://www.mayoclinic.org/tests-procedures/coronary-angioplasty/doctors-departments/pdc-20384762

I know that @thankful, @donnieg and @downhillbob have mentioned occlusion. I would like to invite them to the conversation.

@caretakermom, I notice your name and can't help but ask, are you caring for someone that has total occlusion or is this for yourself?

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@amandaburnett, my husband is the patient and he has coronary total occlusion(CTO) in one of the arteries, the one in the back of the heart not sure what is the technical name. It's the one that runs from the back to the front right. Husband just got a cardiac cath this past Thursday so I will discuss it further with cardiologist on next follow up. Cardiologist says the total occlusion has collateral blood vessels that are moving blood to the heart so the occlusion is not going to cause a heart attack.

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@thankful

@caretakermom, @amandaburnett – Amanda, I saw @caretakermom post and had meant to post but thank you for the added motivation.
My story was that I found out that I had a 100% occlusion only after suffering a HA. Even though I had been working out in a gym 3x a week and for the most part eating healthy, a glass of wine on an occasion and a non-smoker. Suffering through what is referred to as the Widow Maker I was very fortunate in that I choose to have my wife drive me up to the ER. That was a big mistake! Anyway, the best part of the story is that I'm still here!
My LAD (left anterior descending artery) was found to be 100% occluded and my cardiologist was able to install a stent to open it up.
I believe they told me that one other artery was at about 60% occluded, but not at a point that they would stent it.
@caretakermom I'm not 100% sure when you say Coronary Total Occlusion if you are referring to one artery or several?
Several of my earlier posts delve deeper into that story, but feel free to ask any more questions.
Jim @thankful

Jump to this post

@thankful, not sure the technical name but the 100% occluded artery is the one in the back of the heart that runs to the front right. According to the cardiologist, this artery does not really affect the heart muscle, and the collateral blood vessels formed as a result of the occlusion, is supplying adequate, while not optimal, blood to the heart. As such, the cardiologist seems to suggest it should be left alone, since my husband is asymptomatic(no chest pain) doing normal activity. The occlusion, unfortunately, is about 12cm long suggesting that it has been there for quite some time. Surprising because last year during nuclear stress test, the result came back normal. It was the stress test done this year that showed abnormality. Could a 12cm blockage occur within 1 year, or was it there all along and the first nuclear stress test didn't pick it up? Due to the length of the occlusion, cardiologist says it will be a very challenging job to stent the artery and the chance of success is a mere 30%!!! And that is his honest opinion. He is giving me the impression it's almost not worth fixing and it's a valid argument. Except that my husband is also a dialysis patient and he wants to be eligible to get a kidney transplant. Our intention is to list with Mayo in Arizona because the wait list is shorter than California(we live in soCal). To be eligible of transplant listing, the center will require clearance of the heart which means the CTO must be fixed. Sounds like the longer the occlusion, the more complex the procedure. UCLA can do this procedure but they will select certain candidates, mainly the ones with symptoms, which will exclude my husband.
Jim, where did you get treatment for your 100% occluded artery? Was the procedure done at Mayo Clinic in AZ? How big was the occlusion? Are you pleased with the treatment you received? We are looking for a second opinion and was thinking about Mayo Clinic, but I couldn't find anything about treatment for CTO on their website. We are looking for a center that has the technology and expertise to perform Coronary Percutaneous Intervention on CTO. If you have any suggestions, would like to hear your input. Anna

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@caretakermom

@thankful, not sure the technical name but the 100% occluded artery is the one in the back of the heart that runs to the front right. According to the cardiologist, this artery does not really affect the heart muscle, and the collateral blood vessels formed as a result of the occlusion, is supplying adequate, while not optimal, blood to the heart. As such, the cardiologist seems to suggest it should be left alone, since my husband is asymptomatic(no chest pain) doing normal activity. The occlusion, unfortunately, is about 12cm long suggesting that it has been there for quite some time. Surprising because last year during nuclear stress test, the result came back normal. It was the stress test done this year that showed abnormality. Could a 12cm blockage occur within 1 year, or was it there all along and the first nuclear stress test didn't pick it up? Due to the length of the occlusion, cardiologist says it will be a very challenging job to stent the artery and the chance of success is a mere 30%!!! And that is his honest opinion. He is giving me the impression it's almost not worth fixing and it's a valid argument. Except that my husband is also a dialysis patient and he wants to be eligible to get a kidney transplant. Our intention is to list with Mayo in Arizona because the wait list is shorter than California(we live in soCal). To be eligible of transplant listing, the center will require clearance of the heart which means the CTO must be fixed. Sounds like the longer the occlusion, the more complex the procedure. UCLA can do this procedure but they will select certain candidates, mainly the ones with symptoms, which will exclude my husband.
Jim, where did you get treatment for your 100% occluded artery? Was the procedure done at Mayo Clinic in AZ? How big was the occlusion? Are you pleased with the treatment you received? We are looking for a second opinion and was thinking about Mayo Clinic, but I couldn't find anything about treatment for CTO on their website. We are looking for a center that has the technology and expertise to perform Coronary Percutaneous Intervention on CTO. If you have any suggestions, would like to hear your input. Anna

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@caretakermom– Anna, Hello. Since my HA was the result of finding out about my occlusion the stent was placed here at our local hospital in the Willamette Valley of OR. Because of the damage to my heart I had issues with my EF (Ejection Fraction) and had both an Echo as well as a nuclear stress test a year afterwards that really didn't show any changes (collateral blood vessels developing).
I decided to go to the AZ. Mayo for a battery of tests which was led by a great cardiologist named Dr. Lynch. He was amazing!!
The day ended with a Stress Echo which provided the best info he felt for him to determine my actual EF.
Prior to that last Echo back in Corvallis I had gone back to my normal workout regime of 3x a week in an effort to boost my EF, but had been told after my 2nd Echo that there was no real change. After going through the tests at AZ. Mayo in consultation with Dr. Lynch he told me that he felt my EF was more closer to 45-47% rather than the 30% I was being told here. I have felt great after receiving the stent and a new lease on life, but the psychological feeling of what I called "damaged goods" weighed on me and I was determined to do all I could do to reverse that. My visit to the AZ. Mayo put me on that path and I hope you reach out to them.
Mayo provides superior care in so many ways that I will continue to go there for 2nd opinions if needed. For now I remain in great health and am Thankful!
Jim @thankful

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@thankful

@caretakermom– Anna, Hello. Since my HA was the result of finding out about my occlusion the stent was placed here at our local hospital in the Willamette Valley of OR. Because of the damage to my heart I had issues with my EF (Ejection Fraction) and had both an Echo as well as a nuclear stress test a year afterwards that really didn't show any changes (collateral blood vessels developing).
I decided to go to the AZ. Mayo for a battery of tests which was led by a great cardiologist named Dr. Lynch. He was amazing!!
The day ended with a Stress Echo which provided the best info he felt for him to determine my actual EF.
Prior to that last Echo back in Corvallis I had gone back to my normal workout regime of 3x a week in an effort to boost my EF, but had been told after my 2nd Echo that there was no real change. After going through the tests at AZ. Mayo in consultation with Dr. Lynch he told me that he felt my EF was more closer to 45-47% rather than the 30% I was being told here. I have felt great after receiving the stent and a new lease on life, but the psychological feeling of what I called "damaged goods" weighed on me and I was determined to do all I could do to reverse that. My visit to the AZ. Mayo put me on that path and I hope you reach out to them.
Mayo provides superior care in so many ways that I will continue to go there for 2nd opinions if needed. For now I remain in great health and am Thankful!
Jim @thankful

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I'm so glad you're doing great now and was happy with the care you received at Mayo in AZ. I have heard much great things about their kidney transplant program but not much about the cardiology dept.

Did you take Plavix after you got your stent? My husband is currently in the ER becuz shortly after taking Plavix on the 2nd day, he developed a fever and hives, mostly on arms and legs. Out of caution, I took him to the ER. Blood tests show his WBC is normal which means there is no infection. The nurses there believe is an allergic reaction to Plavix but still pending more findings. I'm told he must have Plavix for a year and now I'm fearful or very concerned they may not be able to find an alternative to Plavix.

Your initial visits to Mayo for consultation, did you have to fly/drive back and forth a lot? May I ask who recommended you to seek help at Mayo? Did your cardiologist? I mentioned to the cardiologist we may go to Mayo, since that is also the place where my husband would like to be transplanted, and that they probable prefer to do the "fix" there. Cardiologist says no matter where we go, the procedure is extremely complex and the success rate is dismal!!! We are hoping to get more uplifting feedbacks from Mayo.
Can you tell me who to call to schedule an appointment? I have the number for the Kidney Transplant scheduling staff but not sure who to reach out to schedule a consultation appointment with the cardiology group that treats CTO. Thank you!

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@caretakermom– Anna I took Plavix for the 1st year is all. Now I take a 81 mg aspirin every day.
We have a Timeshare nearby and scheduled my appt. for one of those days we were there.
Normally it may take more than a day for all the tests to be fit in, but when Dr. Lynch found out I was on vacation, he personally made it happen all in the same day. I thought that was pretty amazing!!
The ph. # I have for Cardiology is 480-301-8200.
I believe I opened an account online prior to making any appts.
Because the way the Drs. work at all the Mayo sites in a very collaborative way you can be assured that they will guide you all along the way!
Sending both you Anna & your husband all my blessings. Jim @thankful

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@thankful

@caretakermom– Anna I took Plavix for the 1st year is all. Now I take a 81 mg aspirin every day.
We have a Timeshare nearby and scheduled my appt. for one of those days we were there.
Normally it may take more than a day for all the tests to be fit in, but when Dr. Lynch found out I was on vacation, he personally made it happen all in the same day. I thought that was pretty amazing!!
The ph. # I have for Cardiology is 480-301-8200.
I believe I opened an account online prior to making any appts.
Because the way the Drs. work at all the Mayo sites in a very collaborative way you can be assured that they will guide you all along the way!
Sending both you Anna & your husband all my blessings. Jim @thankful

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Hi Jim, thank you for posting the phone number for the cardiology dept. Will definitely give them a call.
Question: After you were treated for CTO at the Mayo Clinic, were you able to follow up with your local cardiologist?

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@caretakermom– Yes, I have continued seeing (now over Zoom) my cardiologist and he has been great as well.
I stay in touch with Dr. Lynch at Mayo. He gave me his email and said don't hesitate to write him.
He recommended changing my statin 40 mg (Atorvastatin) to the generic form of Crestor 20 mg (Rosuvastatin) and it dropped my LDL to 62 from 78 in 6 months. The other thing that happened was that I had some PN (peripheral neuropathy) that I swore was a result of earlier statin use. No other Dr. would agree. Dr. Lynch felt by using half the dosage to start I may not need to increase the dosage and it may help with the PN.
Well the PN is about 90% gone and I remain on the 20 MG of Rosuvastatin.

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@thankful

@caretakermom– Yes, I have continued seeing (now over Zoom) my cardiologist and he has been great as well.
I stay in touch with Dr. Lynch at Mayo. He gave me his email and said don't hesitate to write him.
He recommended changing my statin 40 mg (Atorvastatin) to the generic form of Crestor 20 mg (Rosuvastatin) and it dropped my LDL to 62 from 78 in 6 months. The other thing that happened was that I had some PN (peripheral neuropathy) that I swore was a result of earlier statin use. No other Dr. would agree. Dr. Lynch felt by using half the dosage to start I may not need to increase the dosage and it may help with the PN.
Well the PN is about 90% gone and I remain on the 20 MG of Rosuvastatin.

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If you wish to further reduce your Rosuvastatin dose, you may consult with your cardiologist to try to add ezetimibe 10mg daily. I have reduced Rosuvastatin from 40 mg per day to less than 5 mg. My LDL went down from 100 to 57.
P.S. I have in the past tried 4 different statins, but the latest combo gave me the best result. Also LCHF diet helped improve all other lipid numbers.

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@thankful

@caretakermom– Anna, Hello. Since my HA was the result of finding out about my occlusion the stent was placed here at our local hospital in the Willamette Valley of OR. Because of the damage to my heart I had issues with my EF (Ejection Fraction) and had both an Echo as well as a nuclear stress test a year afterwards that really didn't show any changes (collateral blood vessels developing).
I decided to go to the AZ. Mayo for a battery of tests which was led by a great cardiologist named Dr. Lynch. He was amazing!!
The day ended with a Stress Echo which provided the best info he felt for him to determine my actual EF.
Prior to that last Echo back in Corvallis I had gone back to my normal workout regime of 3x a week in an effort to boost my EF, but had been told after my 2nd Echo that there was no real change. After going through the tests at AZ. Mayo in consultation with Dr. Lynch he told me that he felt my EF was more closer to 45-47% rather than the 30% I was being told here. I have felt great after receiving the stent and a new lease on life, but the psychological feeling of what I called "damaged goods" weighed on me and I was determined to do all I could do to reverse that. My visit to the AZ. Mayo put me on that path and I hope you reach out to them.
Mayo provides superior care in so many ways that I will continue to go there for 2nd opinions if needed. For now I remain in great health and am Thankful!
Jim @thankful

Jump to this post

Hi Jim @thankful
The latest echocardiogram has my husband's EF at 65%, and that is with the CTO. I will have to find out what EF was prior to the cardiac cath procedure. Yesterday would have been a week since he got his stent installed. Did your EF improve after stent? Anna

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@caretakermom– Anna, My EF improved, but not according to my cardiologist here where my stent was placed. A year later after I had another Echo I was told by the same cardiologist that there was still no change. That's when I decided to make my appt. at the AZ. Mayo. It was approx. 6 months later that I had my appt. with Dr. Lynch and after that battery of tests he confirmed to me that my EF was more like 45-47 rather than 30-32 that I was being told back home. I've read and been told that in many cases collateral blood vessels will often grow into those areas affected in the heart, but mine either took longer and because of the 100% blockage there was damaged heart tissue that would never receive regeneration.
An EF of 65 is totally normal. It would be interesting to know what your husbands was prior to the stent. Jim @thankful

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@thankful

@caretakermom– Anna, My EF improved, but not according to my cardiologist here where my stent was placed. A year later after I had another Echo I was told by the same cardiologist that there was still no change. That's when I decided to make my appt. at the AZ. Mayo. It was approx. 6 months later that I had my appt. with Dr. Lynch and after that battery of tests he confirmed to me that my EF was more like 45-47 rather than 30-32 that I was being told back home. I've read and been told that in many cases collateral blood vessels will often grow into those areas affected in the heart, but mine either took longer and because of the 100% blockage there was damaged heart tissue that would never receive regeneration.
An EF of 65 is totally normal. It would be interesting to know what your husbands was prior to the stent. Jim @thankful

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Jim@thankful. I should be able to find out what my husband EF was prior to stent, because there was 1 previous Nuclear test/Echo done in the first part of 2019 with result coming back "normal". Then in April/May of this year the Echo result was abnormal. However, due to other issues, my husband was not able to get the cardiac cath done right away. At that point, he still had no symptoms such as chest pain so the cardiologist said it was Ok to wait. My husband do the nuclear stress test and Echocardiogram because those must be done annually in order to qualify for transplant. I'm just very surprised that the CTO did not show up in the stress test at the 2019 stress test!!

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@thankful

@caretakermom– Anna, My EF improved, but not according to my cardiologist here where my stent was placed. A year later after I had another Echo I was told by the same cardiologist that there was still no change. That's when I decided to make my appt. at the AZ. Mayo. It was approx. 6 months later that I had my appt. with Dr. Lynch and after that battery of tests he confirmed to me that my EF was more like 45-47 rather than 30-32 that I was being told back home. I've read and been told that in many cases collateral blood vessels will often grow into those areas affected in the heart, but mine either took longer and because of the 100% blockage there was damaged heart tissue that would never receive regeneration.
An EF of 65 is totally normal. It would be interesting to know what your husbands was prior to the stent. Jim @thankful

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Jim @thankful, I'm a little confused. Your comment above suggests the stent to treat the CTO was done by your local cardiologistl? And you went to Mayo to get a second opinion on your EF after the stent was installed? Did you seek any treatments at Mayo other than running a battery of tests? We are hoping Mayo can help treat husband's CTO, if need to be.

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@caretakermom– Anna, If I had the time and was aware of my problem I would have definitely gone to Mayo, but as I said I only found out after suffering my HA. The main reason for the trip to the Mayo as I said was to get an 2nd opinion because I kept being told that my EF had not improved.
I had my HA in May of 2014 and went to the Mayo in April of 2018. The battery of tests I had there confirmed to me that my EF was far better than I had been told here by my Cardiologist over a 4 year period. Jim@thankful

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