Aa
Enlarged heart/Ablation/Amio
I'm a 41 yo, caucasian, female. I have an enlarged heart due to having Marfan Syndrome thus having valvular disease. Had my aorta replaced with a St Jude mech valve at 30 and a mitral valve replaced at 32. I'm having an pv ablation done on Friday at the CC and couldn't get any answers as of yet to--how difficult would it be to do an ablation with these mechanical valves? Is there a greater risk of something going wrong? Also, since my heart is enlarged, and say the ablation is successful, wouldn't the a-fib that I'm having break-thru again eventually or is there a way to compensate because of the enlarged heart? I've also been on Amiodarone for the past 4 years and have experienced somewhat significant vison loss. Since I have stopped the Amio for the ablation for 6 months now, do you think that the loss can be helped and in what way? Is it something that is irreversible? Thanks so much for your assistance.
Hi, I finally got back from my pulmonary vein ablation at the CCF and am definitely glad to be back home. The ablation was not successful because of my story (above). I had a LOT of scar tissue found from my previous mechanical valves surgeries which was very disappointing. Dr Natale, a wonderful physician, gave me a 60% success rate which is not very promising. Believe me, I still have faith because he told me that my heart would still be healing for about 2 months. I believe in miracles. Thanks for all your thoughts and prayers. Please don't hesitate to ask me any questions. --Lydia
You're right Barbie, They do sound like the same person. Maybe so. ----Lydia
no I mean are kristin and dottyy the same person? Sorry marlyn.
Am I missing something in this post are marlyn and kristin the same person?
Hi Kristen, I wanted to ask you who did your procedure? When was it done and how are you doing these days with the ablation you've had with your pacemaker? I will be leaving for my procedure today so I may not be able to speak with you until next week? Take care, --Lydia
Hi Bob, When I was about 7 years old, my parents took me to see an opthamologist and he told me that my eyes, subluxated lenses, were definitely part of Marfan's Syndrome. Even to this day I am still surprised that such a diagnosis was made by him back then. These days, believe it or not, some drs tell me they don't know anything about Marfans or haven't even heard of it. You definitely have some of the characteristics: the high palate, the arm span longer than your actual height, your height, possibly your heart, some joint problems.
Since I was diagnosed at a very young age, I didn't deal with any type of Universities or organizations. I guess you can say it was a good thing so I didn't have to go thru all that "stuff". I just started going to a doctor who knew a lot about Marfan and anually he did all the cardivascular tests including a 2D echo, TEE-Trans Esophogeal Echo, stress test with contrast, Muga etc... I continue to have everything monitored. I think that my situation is pretty much under control except fot the atrial fibrillation that I am experiencing now. I will be leaving today, from NJ, for my procedure at the Cleveland Clinic so I won't be able to correspond with you until next week. I don't care what anybody says, I know it's going to work for me. A positive outlook is always the best medicine.
Take care of yourself and keep probing the questions. I don't want to scare you but prevention is key. I have a friend who has Marfan and her heart is not affected at all but she continues to have cardiovascular checks. She has problems with her eyes.
Have a wonderful weekend! --Lydia
Since I was diagnosed at a very young age, I didn't deal with any type of Universities or organizations. I guess you can say it was a good thing so I didn't have to go thru all that "stuff". I just started going to a doctor who knew a lot about Marfan and anually he did all the cardivascular tests including a 2D echo, TEE-Trans Esophogeal Echo, stress test with contrast, Muga etc... I continue to have everything monitored. I think that my situation is pretty much under control except fot the atrial fibrillation that I am experiencing now. I will be leaving today, from NJ, for my procedure at the Cleveland Clinic so I won't be able to correspond with you until next week. I don't care what anybody says, I know it's going to work for me. A positive outlook is always the best medicine.
Take care of yourself and keep probing the questions. I don't want to scare you but prevention is key. I have a friend who has Marfan and her heart is not affected at all but she continues to have cardiovascular checks. She has problems with her eyes.
Have a wonderful weekend! --Lydia
Lidushoe,
Thanks for your comments and concern.
I am 37 years old. I am not too tired, I have been playing basketball right up until one month ago. I have had a shortness of breath for approximately three years now. I'm not sure if its' becaise I have been constantly thinking about this Marfan's thing or if there really is something wrong!
I spoke to the doctor that did the report on my CT scans this morning and he basically told me that the equipment they used for my first scan is outdated and no longer "improved technology". He basically told me that the old equipment and the new equipment are difficult to determine the same location for recording the same measuremnt. I pulled the films from the hospital's x-ray file room and have an appointment with the chief of thoracic cardiology at Yale New Haven. He will review all the tests and possibly re-do some of them.
I work for a medical company as a design engineer and actually have a patent on aortic valve replacement procedures. I have been out to a few cases for valve replacements. This thoracic surgeon has dealt with my company and is highly respected in his field.
What tests were you put through to diagnose Marfan's? Did Marfan's affect anything else? I live in Connecticut and think Yale is the best hospital in the area. Their speciality is not Marfan's but they are on the leading edge for cardio. What University have you been dealing with?
Take care and thanks again!
~Bob
Thanks for your comments and concern.
I am 37 years old. I am not too tired, I have been playing basketball right up until one month ago. I have had a shortness of breath for approximately three years now. I'm not sure if its' becaise I have been constantly thinking about this Marfan's thing or if there really is something wrong!
I spoke to the doctor that did the report on my CT scans this morning and he basically told me that the equipment they used for my first scan is outdated and no longer "improved technology". He basically told me that the old equipment and the new equipment are difficult to determine the same location for recording the same measuremnt. I pulled the films from the hospital's x-ray file room and have an appointment with the chief of thoracic cardiology at Yale New Haven. He will review all the tests and possibly re-do some of them.
I work for a medical company as a design engineer and actually have a patent on aortic valve replacement procedures. I have been out to a few cases for valve replacements. This thoracic surgeon has dealt with my company and is highly respected in his field.
What tests were you put through to diagnose Marfan's? Did Marfan's affect anything else? I live in Connecticut and think Yale is the best hospital in the area. Their speciality is not Marfan's but they are on the leading edge for cardio. What University have you been dealing with?
Take care and thanks again!
~Bob
Sorry I misunderstood. I did have the pulmonary veins ablated as well but it didn't work. They did this in surgery when I had the valve replaced. Actually I had two surgical ablations and one catheter ablation. None of it worked so the only option left was the AV node ablation which I really never wanted done but got to a point where I couldn't cope with the rapid rates any more.
Hi Bob, I am certainly glad that you responded. I understand completely your frustration with Marfans and I would not quit until you find the straight answers you so deserve. I understand that John Hopkins Hospital in Maryland specializes in Marfan Syndrome so you may want to check them out.
I would also stop playing basketball if I were you, until you know it is a safe time and have a green light, because as you know Marfan does affect the heart (either moderately or severely) and you never know when you may have an extreme episode, especially with the Aorta. I don't really understand all the measurement numbers because I haven't talked about them for so long with my doctors. A handful of professional basketball players have "dropped" in the middle of a game because of there medical problem they didn't even know they had--Marfans of course. If you notice, most basketball players have that long, lanky looked which strongly resembles Marfans. How old are you Bob? How tired are you, if at all? Please let me know what you find out. I am really interested.
Thank you for your kind words and I hope to let you know of my outcome. --Lydia
I would also stop playing basketball if I were you, until you know it is a safe time and have a green light, because as you know Marfan does affect the heart (either moderately or severely) and you never know when you may have an extreme episode, especially with the Aorta. I don't really understand all the measurement numbers because I haven't talked about them for so long with my doctors. A handful of professional basketball players have "dropped" in the middle of a game because of there medical problem they didn't even know they had--Marfans of course. If you notice, most basketball players have that long, lanky looked which strongly resembles Marfans. How old are you Bob? How tired are you, if at all? Please let me know what you find out. I am really interested.
Thank you for your kind words and I hope to let you know of my outcome. --Lydia
Hi Dotty,
Thanks so much for your comment but I am having the pulmonary veins ablated and not the procedure you had which is a a different type of ablation (SA Node ablation) which would make you pacemaker dependent. With the ablation I'm having, I wouldn't be pacemaker dependent.
My EP suggested I have that particular procedure only because he only performs that type of ablation. I said absolutely no way and began the research I needed to make a better health decision and found the PVA which my EP eventually told me about.
Thanks again for your thoughts and I hope you are in great health.
---Lidushoe
Thanks so much for your comment but I am having the pulmonary veins ablated and not the procedure you had which is a a different type of ablation (SA Node ablation) which would make you pacemaker dependent. With the ablation I'm having, I wouldn't be pacemaker dependent.
My EP suggested I have that particular procedure only because he only performs that type of ablation. I said absolutely no way and began the research I needed to make a better health decision and found the PVA which my EP eventually told me about.
Thanks again for your thoughts and I hope you are in great health.
---Lidushoe
I have a mechanical mitral valve and had the AV nodal ablation for uncontrolled atrial fib. I don't believe there is any increased risk except that you have to go off the coumadin and there may be some risks with that. Actually the procedure took very little time. If the AV node is ablated, you shouldn't have any break through of atrial fib because it would be blocked at the node. You would be pacer dependent though. There is always the possibility of breakthrough if the node is not completely ablated. I have to say it was a very quick and easy procedure to have done.
Lidushoe,
Sorry to hear about your heart problems.
I see that you have been diagnosed with Marfan's and had a few comments I need to get out.
I have recently gone through tests to determine if I have Marfan's. My physician thought I had a few physical characteristics of Marfan's - arm span to height ratio is close to 1.05 (I am 6'6" tall), high arch to roof of mouth and some flexibility in joints. He sent me for an echocardiogram which came back negative and then sent me for a CT chest scan. The CT scan was done 2.5 years ago and this was the impression:
The ascending aorta at the level of the takeoff of the left coronary artery is 36.8mm. The sinotubular junction measures 44.5mm. The aortic valve sinus is rather prominent.
It was determined that for my height, weight and age that this was to the high end of normal.
I recently went to emergency room with palpatations and have been experiencing shortness of breath for over one year now. They performed a nuclear stress test and found everything to be normal. My doctor wanted me to see a cardiologist who sent me for another echocardiogram, a 24-hour holter monitor and a CT scan. The echo and holter test were normal but the CT scan impression read like this:
At the takeoff of the left coronary artery, the diameter of the aorta is 44mm and was 36.8mm. The descending thoracic aorta is normal. The sinus of Valsalva remains prominent.
The CT scans were reported by the same doctor but he didn't record measurements in the same area of the aorta. In the first scan the 44.5mm measurement was across the sinotubular junction and the take off of the left coronary artery measured 36.8mm. In the second scan he did not report the measurement across the sinotubular junction. I have an appointment today to try to clear this up. I am hoping there is a mistake in the measurements but what are the chances of that.
My cardiologist put me on beta-blockers and told me to discontinue playing basketball. I haven't started the beta-blockers because I am worried that my heart rate is already towards the lowe end. The holter picked up a reading of 39bpm during sleep.
Hope everything turns out alright for you.
~Bob
Sorry to hear about your heart problems.
I see that you have been diagnosed with Marfan's and had a few comments I need to get out.
I have recently gone through tests to determine if I have Marfan's. My physician thought I had a few physical characteristics of Marfan's - arm span to height ratio is close to 1.05 (I am 6'6" tall), high arch to roof of mouth and some flexibility in joints. He sent me for an echocardiogram which came back negative and then sent me for a CT chest scan. The CT scan was done 2.5 years ago and this was the impression:
The ascending aorta at the level of the takeoff of the left coronary artery is 36.8mm. The sinotubular junction measures 44.5mm. The aortic valve sinus is rather prominent.
It was determined that for my height, weight and age that this was to the high end of normal.
I recently went to emergency room with palpatations and have been experiencing shortness of breath for over one year now. They performed a nuclear stress test and found everything to be normal. My doctor wanted me to see a cardiologist who sent me for another echocardiogram, a 24-hour holter monitor and a CT scan. The echo and holter test were normal but the CT scan impression read like this:
At the takeoff of the left coronary artery, the diameter of the aorta is 44mm and was 36.8mm. The descending thoracic aorta is normal. The sinus of Valsalva remains prominent.
The CT scans were reported by the same doctor but he didn't record measurements in the same area of the aorta. In the first scan the 44.5mm measurement was across the sinotubular junction and the take off of the left coronary artery measured 36.8mm. In the second scan he did not report the measurement across the sinotubular junction. I have an appointment today to try to clear this up. I am hoping there is a mistake in the measurements but what are the chances of that.
My cardiologist put me on beta-blockers and told me to discontinue playing basketball. I haven't started the beta-blockers because I am worried that my heart rate is already towards the lowe end. The holter picked up a reading of 39bpm during sleep.
Hope everything turns out alright for you.
~Bob
MEDICAL PROFESSIONAL
lidushoe,
All previous heart surgeries certainly make the procedure more complicated. You should call your EPs office here and discuss the exact risk with them before proceeding with the procedure.
A larger atrial size is associated with less success with the procedure. The larger the less success. This depends on specific echocardiographic measurements.
Amiodarone is a two edged sword in many aspects. There are reports of optical side effects such as vision loss. Some of the reports do note improvement in symptoms with cessation of amiodarone therapy. Amiodarone has a very long half life in the body so improvement may take a long period of time (ie...months). Repeat visual testing at 3-6 months would probably be helpful in monitoring progress.
good luck with everything
All previous heart surgeries certainly make the procedure more complicated. You should call your EPs office here and discuss the exact risk with them before proceeding with the procedure.
A larger atrial size is associated with less success with the procedure. The larger the less success. This depends on specific echocardiographic measurements.
Amiodarone is a two edged sword in many aspects. There are reports of optical side effects such as vision loss. Some of the reports do note improvement in symptoms with cessation of amiodarone therapy. Amiodarone has a very long half life in the body so improvement may take a long period of time (ie...months). Repeat visual testing at 3-6 months would probably be helpful in monitoring progress.
good luck with everything
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