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J. Pisano
Questions answered by Dr. Tchou, CCF October 14, 2003 05:27PM |
Hello All,
I had my appointment, October 2nd at the CCF. I met with Dr. Tchou and Dr. Jones. Dr. Jones spent 2 hours with me and Dr. Tchou about 30 minutes. I was impressed with the time they gave me to answer my questions about my condition and the ablation procedure.
Dr. Jones was very impressed with the level of knowledge, I had in regard to this condition, of which I can thank many of your for and certainly Hans. From his reaction to my seemingly, well "versedness" in this, I can only imagine how many people blindly go into his office, without even knowing what afib is......
I posed quite a few questions to him. I will list them below and his answers. Some of these questions I gleaned form this site and others who were asking them, so I hope they may be of help.
*************************************
Questions about my over all feelings.
1.) Why do I feel worse, just before going into afib, than when I am
in it?
Answer. The heart is retraining itself for a new rhythm and is
fighting with electrical signals to stay in NSR and ones that are
pulling it out.
2.) Why do I feel worse, coming out of afib, then when I am in it?
Answer. Same as 1.
3.) I experience skipped beats, and extra beats, fast and slower
beats, a few times a week, at this time I also feel fatigued and
anxious is this normal for people with afib?
Answer. Yes this is very normal for people who have afib.
Different people will have different symptoms.
4.) I have no problems exercising, riding my bike 5-10 miles a day
and also no problems using by elliptical trainer for 30-40 minutes
a day, but I usually feel odd sensations after I walk up stairs?
What is this indicative of?
No good answer for this question.
5.) Certain times, I have odd sensations in my chest/heart area, not
pain, not odd rhythms, just a funny light/tickling feeling almost
electric, has anyone else experienced this? What is it?
Answer, people who have arrythmias may or may not experience
this feeling, they could not quantify it, but said that many people
talk of this type of sensation.
6.) Typically after I convert from afib, I am extremely tired, more so
than when in afib, is this normal?
Answer: Refer to Number 1.
7.) Certain foods definitely affect me and the occurrence of the afib,
for example. Foods high in sugar, Extremely Cold Beverages,
foods loaded with MSG, like Doritos, etc . Why would this affect
me being in afib Is this related to the vagus nerve and the
vagal side of the autonomic nervous system?
Answer: Dr. Tchou and Dr. Jones said that they don't doubt
there could be a relation, because many people complain about
these signs, but said that this is not likely the root of the
problem.
8.) When I have lots of stomach gas, I feel a tendency for increased
beats, heart rate and have a tendency to go into afib, why would
this be related?
Answer: Again, this was related to the number 7.
9.) Why did the drug Tambacour make me feel like I was dying?
Answer: Different people react differently to each type of drug.
I had an adverse reaction to this type of drug. Dr. Jones seemed
to think that Rhytmol was a better choice.
10.) I Have never had high blood pressure, after 3 months with afib, I
now have it, it comes and goes, is this indicative of a stenosis
somewhere or is it normal.
Answer: This seemed to baffle them, usually the tendency is
the other way around. They could not give me a good answer
about this.
11.) I now seem to have problems with sugar highs and lows, I have
had a GTT, it appears to come out normal, with just a high
tendency toward the sugar staying in my blood a little longer.
In contrast, I have also seen my blood sugar to low Is this a
symptom of the afib?
Answer: I don't remember getting a satisfactory answer to this.
In my next post on this thread I will post the questions about the ablation procedure.
I had my appointment, October 2nd at the CCF. I met with Dr. Tchou and Dr. Jones. Dr. Jones spent 2 hours with me and Dr. Tchou about 30 minutes. I was impressed with the time they gave me to answer my questions about my condition and the ablation procedure.
Dr. Jones was very impressed with the level of knowledge, I had in regard to this condition, of which I can thank many of your for and certainly Hans. From his reaction to my seemingly, well "versedness" in this, I can only imagine how many people blindly go into his office, without even knowing what afib is......
I posed quite a few questions to him. I will list them below and his answers. Some of these questions I gleaned form this site and others who were asking them, so I hope they may be of help.
*************************************
Questions about my over all feelings.
1.) Why do I feel worse, just before going into afib, than when I am
in it?
Answer. The heart is retraining itself for a new rhythm and is
fighting with electrical signals to stay in NSR and ones that are
pulling it out.
2.) Why do I feel worse, coming out of afib, then when I am in it?
Answer. Same as 1.
3.) I experience skipped beats, and extra beats, fast and slower
beats, a few times a week, at this time I also feel fatigued and
anxious is this normal for people with afib?
Answer. Yes this is very normal for people who have afib.
Different people will have different symptoms.
4.) I have no problems exercising, riding my bike 5-10 miles a day
and also no problems using by elliptical trainer for 30-40 minutes
a day, but I usually feel odd sensations after I walk up stairs?
What is this indicative of?
No good answer for this question.
5.) Certain times, I have odd sensations in my chest/heart area, not
pain, not odd rhythms, just a funny light/tickling feeling almost
electric, has anyone else experienced this? What is it?
Answer, people who have arrythmias may or may not experience
this feeling, they could not quantify it, but said that many people
talk of this type of sensation.
6.) Typically after I convert from afib, I am extremely tired, more so
than when in afib, is this normal?
Answer: Refer to Number 1.
7.) Certain foods definitely affect me and the occurrence of the afib,
for example. Foods high in sugar, Extremely Cold Beverages,
foods loaded with MSG, like Doritos, etc . Why would this affect
me being in afib Is this related to the vagus nerve and the
vagal side of the autonomic nervous system?
Answer: Dr. Tchou and Dr. Jones said that they don't doubt
there could be a relation, because many people complain about
these signs, but said that this is not likely the root of the
problem.
8.) When I have lots of stomach gas, I feel a tendency for increased
beats, heart rate and have a tendency to go into afib, why would
this be related?
Answer: Again, this was related to the number 7.
9.) Why did the drug Tambacour make me feel like I was dying?
Answer: Different people react differently to each type of drug.
I had an adverse reaction to this type of drug. Dr. Jones seemed
to think that Rhytmol was a better choice.
10.) I Have never had high blood pressure, after 3 months with afib, I
now have it, it comes and goes, is this indicative of a stenosis
somewhere or is it normal.
Answer: This seemed to baffle them, usually the tendency is
the other way around. They could not give me a good answer
about this.
11.) I now seem to have problems with sugar highs and lows, I have
had a GTT, it appears to come out normal, with just a high
tendency toward the sugar staying in my blood a little longer.
In contrast, I have also seen my blood sugar to low Is this a
symptom of the afib?
Answer: I don't remember getting a satisfactory answer to this.
In my next post on this thread I will post the questions about the ablation procedure.
|
J. Pisano
Ablation procedure answered... October 14, 2003 05:37PM |
These are some of the questions I posed to Dr. Tchou...
Questions about the ablation procedure...
1.) How certain is it that heart rate variability never returns to
normal after an ablation?
Answer: Heart rate varibilty normally returns to the before
surgery levels by 2-3 months.
He said to expect to have some problems with the heart rate
speeding up and slowing down, the first day or two after surgery
and prescribes very little activity at that point.
2.) How certain is it that the increase in heart rate after an ablation never
returns to before-ablation levels?
Answer: Their experience is that it does return to normal.
3.) Do ALL patients who undergo an ablation experience a decrease in
heart rate variability at least for a while?
Answer: It depends, and it does return to pre-procedure status.
4.) Do ALL patients who undergo an ablation experience an increase in
heart rate at least for a while?
Answer: Sames as 3.
5.) Can it be said which kinds of patients are most subject to heart rate
variability and heart rate increase problems after an ablation?
Answer: No.
2.) What are the chances of Stenosis after an ablation?
Answer 2%
a. How often do you check for stenosis after the ablation procedure?
Answer: At the next 2 checkups. 3 months apart.
b. How often do you check for stenosis during the recovery period?
Answer: Cannot be checked at that point, because it has not
started helaing.
c. What are the long terms implications for stenosis with an
ablation??
Answer: If found, it can be corrected.
d. Do you use an intra cardiac echo catheter in the procedure?
Answer: Yes.
3.) When doing a PVI procedure or P. Ablation do you have to ablate
both pulmonary veins and both pulmonary arteries or do you
simply ablate the offending vein and/or artery? Why?
Answer. Typically the first procedure they ablate all of them.
Then, if a second is needed more carto mapping is done at
that point, to precisly determine the rouge foci points.
a. How often do you have to perform a touchup ablation?
Answer: 10-15%
b. What are your success rates with both the initial and the touchup
Answer: 80% and 95% respectively.
c. What exactly do you consider a success when accrediting the
term to an ablation procedure?
No return of Afib and off antiarrhytmia drugs by 3 months.
d. Why is a full circumferential ablation preferred over a focal point
ablation?
Answer: Their experience is this has a higher success rate and
also due to the lasso type catheators they use.
4.) I dont like being on anti-arrhythmic drugs, how long would I
have to be on them and at what doses after an ablation?
Answer: Certaily after the procedure, but most will be weened
Off by 3 months.
a. What are your typical times for weaning people off these drugs?
Answer: 3 Months.
b. Will you use drugs to bring me out of afib, after the procedure?
c. Can I specify NO-Electrocadio conversion as an option or opt. to come out of my afib? naturally after the procedure?
5.) How much mapping is done during the initial ablation procedure to look for other problem spots?
6.) I have great concerns about Atrial Flutter after an ablation. What can you tell me about this problem appearing after an ablation?
a. Why does this atrial flutter appear after an ablation sometimes?
b. I have read that people actually experience worse sensations with this flutter than their afib
Questions about the ablation procedure...
1.) How certain is it that heart rate variability never returns to
normal after an ablation?
Answer: Heart rate varibilty normally returns to the before
surgery levels by 2-3 months.
He said to expect to have some problems with the heart rate
speeding up and slowing down, the first day or two after surgery
and prescribes very little activity at that point.
2.) How certain is it that the increase in heart rate after an ablation never
returns to before-ablation levels?
Answer: Their experience is that it does return to normal.
3.) Do ALL patients who undergo an ablation experience a decrease in
heart rate variability at least for a while?
Answer: It depends, and it does return to pre-procedure status.
4.) Do ALL patients who undergo an ablation experience an increase in
heart rate at least for a while?
Answer: Sames as 3.
5.) Can it be said which kinds of patients are most subject to heart rate
variability and heart rate increase problems after an ablation?
Answer: No.
2.) What are the chances of Stenosis after an ablation?
Answer 2%
a. How often do you check for stenosis after the ablation procedure?
Answer: At the next 2 checkups. 3 months apart.
b. How often do you check for stenosis during the recovery period?
Answer: Cannot be checked at that point, because it has not
started helaing.
c. What are the long terms implications for stenosis with an
ablation??
Answer: If found, it can be corrected.
d. Do you use an intra cardiac echo catheter in the procedure?
Answer: Yes.
3.) When doing a PVI procedure or P. Ablation do you have to ablate
both pulmonary veins and both pulmonary arteries or do you
simply ablate the offending vein and/or artery? Why?
Answer. Typically the first procedure they ablate all of them.
Then, if a second is needed more carto mapping is done at
that point, to precisly determine the rouge foci points.
a. How often do you have to perform a touchup ablation?
Answer: 10-15%
b. What are your success rates with both the initial and the touchup
Answer: 80% and 95% respectively.
c. What exactly do you consider a success when accrediting the
term to an ablation procedure?
No return of Afib and off antiarrhytmia drugs by 3 months.
d. Why is a full circumferential ablation preferred over a focal point
ablation?
Answer: Their experience is this has a higher success rate and
also due to the lasso type catheators they use.
4.) I dont like being on anti-arrhythmic drugs, how long would I
have to be on them and at what doses after an ablation?
Answer: Certaily after the procedure, but most will be weened
Off by 3 months.
a. What are your typical times for weaning people off these drugs?
Answer: 3 Months.
b. Will you use drugs to bring me out of afib, after the procedure?
c. Can I specify NO-Electrocadio conversion as an option or opt. to come out of my afib? naturally after the procedure?
5.) How much mapping is done during the initial ablation procedure to look for other problem spots?
6.) I have great concerns about Atrial Flutter after an ablation. What can you tell me about this problem appearing after an ablation?
a. Why does this atrial flutter appear after an ablation sometimes?
b. I have read that people actually experience worse sensations with this flutter than their afib
|
J. Pisano
Ablation procedure answered... October 14, 2003 05:40PM |
These are some of the questions I posed to Dr. Tchou...
Questions about the ablation procedure...
1.) How certain is it that heart rate variability never returns to
normal after an ablation?
Answer: Heart rate varibilty normally returns to the before
surgery levels by 2-3 months.
He said to expect to have some problems with the heart rate
speeding up and slowing down, the first day or two after surgery
and prescribes very little activity at that point.
2.) How certain is it that the increase in heart rate after an ablation never
returns to before-ablation levels?
Answer: Their experience is that it does return to normal.
3.) Do ALL patients who undergo an ablation experience a decrease in
heart rate variability at least for a while?
Answer: It depends, and it does return to pre-procedure status.
4.) Do ALL patients who undergo an ablation experience an increase in
heart rate at least for a while?
Answer: Sames as 3.
5.) Can it be said which kinds of patients are most subject to heart rate
variability and heart rate increase problems after an ablation?
Answer: No.
2.) What are the chances of Stenosis after an ablation?
Answer 2%
a. How often do you check for stenosis after the ablation procedure?
Answer: At the next 2 checkups. 3 months apart.
b. How often do you check for stenosis during the recovery period?
Answer: Cannot be checked at that point, because it has not
started helaing.
c. What are the long terms implications for stenosis with an
ablation??
Answer: If found, it can be corrected.
d. Do you use an intra cardiac echo catheter in the procedure?
Answer: Yes.
3.) When doing a PVI procedure or P. Ablation do you have to ablate
both pulmonary veins and both pulmonary arteries or do you
simply ablate the offending vein and/or artery? Why?
Answer. Typically the first procedure they ablate all of them.
Then, if a second is needed more carto mapping is done at
that point, to precisly determine the rouge foci points.
a. How often do you have to perform a touchup ablation?
Answer: 10-15%
b. What are your success rates with both the initial and the touchup
Answer: 80% and 95% respectively.
c. What exactly do you consider a success when accrediting the
term to an ablation procedure?
No return of Afib and off antiarrhytmia drugs by 3 months.
d. Why is a full circumferential ablation preferred over a focal point
ablation?
Answer: Their experience is this has a higher success rate and
also due to the lasso type catheators they use.
4.) I dont like being on anti-arrhythmic drugs, how long would I
have to be on them and at what doses after an ablation?
Answer: Certaily after the procedure, but most will be weened
Off by 3 months.
a. What are your typical times for weaning people off these drugs?
Answer: 3 Months.
b. Will you use drugs to bring me out of afib, after the procedure?
Answer: No, but they will use electrocardiversion if needed. You
have to sign a release form before you will be considered for an
ablation.
c. Can I specify NO-Electrocadio conversion as an option or opt. to
come out of my afib? naturally after the procedure?
Answer. NO.
5.) How much mapping is done during the initial ablation procedure
to look for other problem spots?
Answer: Not nearly as much as if a second is needed.
6.) I have great concerns about Atrial Flutter after an ablation. What
can you tell me about this problem appearing after an ablation?
Answer: Atrial Fib, can mask Attrial Flutter, the flutter may appear
once the afib is removed.
a. Why does this atrial flutter appear after an ablation sometimes?
Answer: Again, sometimes it is there as well. An ablation
procedure has been in place for 12 years that can remove the
atrial flutter and is a much simplier procedure.
b. I have read that people actually experience worse sensations
with this flutter than their afib
Answer: This would depend on the individual.
Next,
Read my impressions in the next thread of this message.
Questions about the ablation procedure...
1.) How certain is it that heart rate variability never returns to
normal after an ablation?
Answer: Heart rate varibilty normally returns to the before
surgery levels by 2-3 months.
He said to expect to have some problems with the heart rate
speeding up and slowing down, the first day or two after surgery
and prescribes very little activity at that point.
2.) How certain is it that the increase in heart rate after an ablation never
returns to before-ablation levels?
Answer: Their experience is that it does return to normal.
3.) Do ALL patients who undergo an ablation experience a decrease in
heart rate variability at least for a while?
Answer: It depends, and it does return to pre-procedure status.
4.) Do ALL patients who undergo an ablation experience an increase in
heart rate at least for a while?
Answer: Sames as 3.
5.) Can it be said which kinds of patients are most subject to heart rate
variability and heart rate increase problems after an ablation?
Answer: No.
2.) What are the chances of Stenosis after an ablation?
Answer 2%
a. How often do you check for stenosis after the ablation procedure?
Answer: At the next 2 checkups. 3 months apart.
b. How often do you check for stenosis during the recovery period?
Answer: Cannot be checked at that point, because it has not
started helaing.
c. What are the long terms implications for stenosis with an
ablation??
Answer: If found, it can be corrected.
d. Do you use an intra cardiac echo catheter in the procedure?
Answer: Yes.
3.) When doing a PVI procedure or P. Ablation do you have to ablate
both pulmonary veins and both pulmonary arteries or do you
simply ablate the offending vein and/or artery? Why?
Answer. Typically the first procedure they ablate all of them.
Then, if a second is needed more carto mapping is done at
that point, to precisly determine the rouge foci points.
a. How often do you have to perform a touchup ablation?
Answer: 10-15%
b. What are your success rates with both the initial and the touchup
Answer: 80% and 95% respectively.
c. What exactly do you consider a success when accrediting the
term to an ablation procedure?
No return of Afib and off antiarrhytmia drugs by 3 months.
d. Why is a full circumferential ablation preferred over a focal point
ablation?
Answer: Their experience is this has a higher success rate and
also due to the lasso type catheators they use.
4.) I dont like being on anti-arrhythmic drugs, how long would I
have to be on them and at what doses after an ablation?
Answer: Certaily after the procedure, but most will be weened
Off by 3 months.
a. What are your typical times for weaning people off these drugs?
Answer: 3 Months.
b. Will you use drugs to bring me out of afib, after the procedure?
Answer: No, but they will use electrocardiversion if needed. You
have to sign a release form before you will be considered for an
ablation.
c. Can I specify NO-Electrocadio conversion as an option or opt. to
come out of my afib? naturally after the procedure?
Answer. NO.
5.) How much mapping is done during the initial ablation procedure
to look for other problem spots?
Answer: Not nearly as much as if a second is needed.
6.) I have great concerns about Atrial Flutter after an ablation. What
can you tell me about this problem appearing after an ablation?
Answer: Atrial Fib, can mask Attrial Flutter, the flutter may appear
once the afib is removed.
a. Why does this atrial flutter appear after an ablation sometimes?
Answer: Again, sometimes it is there as well. An ablation
procedure has been in place for 12 years that can remove the
atrial flutter and is a much simplier procedure.
b. I have read that people actually experience worse sensations
with this flutter than their afib
Answer: This would depend on the individual.
Next,
Read my impressions in the next thread of this message.
|
J. Pisano
More Information about the visit. October 14, 2003 05:52PM |
I point blank asked Dr. Tchou how many people he has worked on that have died from this procedure. He told me 0. and also that no one has died that he worked on from complications after.
I also asked him about up and coming procedures that may be on the horizon. Such as the cryo and ultrasound catheters. He said that the ultrasound ones are showing little promise but that the cryo caths. may be the next better step in the treatment of this procedure. He says that it will be at least 2 years before they are testing this on a larger scale with humans.
I also asked them about my condition of vagal afib. Dr. Jones seemed to think that I may be vagal in orientation and Dr. Tchou seems def. said no. Dr. Tchou says the defining characteristic of vagal fib, is someone who goes into atrial fib while sleeping, this has not happened to me. See my story in later post in this thread.....
I also asked Dr. Tchou about the positive effects of magnesium, had on me, he said that he believes that magnesium definetly has an anti-arrythmic effect, but it is a minor effect.......
I also supplied them with a list of all my vitamins and supplements.... See attachment in this thread.... Dr. Jones did not seem to think that any of these things we're harmful... and was not shocked at the dosages either. He did not say they we're helpful either......
They told me that afib was one of the rare instances were the patient can dictate the treatment. More drugs....Ablation....or bigger surgeries..Cox-Maze...etc.....
I am not sure what I am going to do yet. They did ease my mind on some of these things however.........
For those of you seeking credibility for the "on demand" use of drugs like rhytmol, they offered me this as a possibility. They told me I could take rhtymol 3 times a day or on demand..... I find this interestins, especially since some of the recent posts here.
I really liked both of them and would reccomend talking to them if you are so inclined to make the trip to Cleveland. Most importantly, I was happy that I was on par with them in my conversation. There really we're no surprises and I understood and could talk in thir terminology...which was to my advantage.
I probably forgot some things, so feel free to ask.... I am going to post my story and my supplements in the next 2 posts...
For what it is worth,
Joe
I also asked him about up and coming procedures that may be on the horizon. Such as the cryo and ultrasound catheters. He said that the ultrasound ones are showing little promise but that the cryo caths. may be the next better step in the treatment of this procedure. He says that it will be at least 2 years before they are testing this on a larger scale with humans.
I also asked them about my condition of vagal afib. Dr. Jones seemed to think that I may be vagal in orientation and Dr. Tchou seems def. said no. Dr. Tchou says the defining characteristic of vagal fib, is someone who goes into atrial fib while sleeping, this has not happened to me. See my story in later post in this thread.....
I also asked Dr. Tchou about the positive effects of magnesium, had on me, he said that he believes that magnesium definetly has an anti-arrythmic effect, but it is a minor effect.......
I also supplied them with a list of all my vitamins and supplements.... See attachment in this thread.... Dr. Jones did not seem to think that any of these things we're harmful... and was not shocked at the dosages either. He did not say they we're helpful either......
They told me that afib was one of the rare instances were the patient can dictate the treatment. More drugs....Ablation....or bigger surgeries..Cox-Maze...etc.....
I am not sure what I am going to do yet. They did ease my mind on some of these things however.........
For those of you seeking credibility for the "on demand" use of drugs like rhytmol, they offered me this as a possibility. They told me I could take rhtymol 3 times a day or on demand..... I find this interestins, especially since some of the recent posts here.
I really liked both of them and would reccomend talking to them if you are so inclined to make the trip to Cleveland. Most importantly, I was happy that I was on par with them in my conversation. There really we're no surprises and I understood and could talk in thir terminology...which was to my advantage.
I probably forgot some things, so feel free to ask.... I am going to post my story and my supplements in the next 2 posts...
For what it is worth,
Joe
|
J. Pisano
My supplements and exercise schedule: October 14, 2003 05:53PM |
List of Supplements and Medication taken and Exercise Schedule.
Medication:
Norvas 5mg.
Only take when blood pressure is higher.
Supplements Per Day:
Magnesium 1000mg
Vitamin C 1000-3000mg
Folic Acic 800 mcg
Coenzyme Q10 150 mg
B Complex
1 10mg
2 15mg
3 25mg
6 10mg
12 25mg
Pantho. 100mg
Fiber 5g
EPA Omega 3 1000mg
Garlic 1200mg
Standard Multi- 2x-3x RDA
Exercise.
Bike 5miles per day 5 days a week
Bike 20 miles over weekend, if possible.
Eliptic Exersice 30 minutes per day 4 days a week
Anarobic Exersice 1 day per week 30 minutes...Lift weights (Light)
On Occasion:
Niacin 500mg
Chromium Picc. 400mcg
Vitamin E 400mg-1000mg
Vitamin A&D 2x RDA
|
J. Pisano
My Story. October 14, 2003 05:55PM |
I presented this to Dr. Jones when we first met, He actually took the time to read this, right in front of me...........
J. Pisano
My Story of AFIB.
When I first had my atrial fib, I was very far into the Atkins diet, and nutritional defunct (I did not understand nutritional balance, as well as I should have at that point- nutrition necessity, that is). Regardless, I was under a lot of stress, as well and had a severe bout of afib. I went in to the ER. They followed a standard protocol of Heparim and Vermapil . they stopped my heart 3 times. Their hope was that when it restarted- it would be in a/sinus rhythm. It didn't. They took me up to intensive care, probably due to my tachycardia and called in the cardiologist.
He administered an IV drug of which I am not sure of the name and told me that it had a 50% chance of working. Anyway, I converted after about 8 hours . I am not so sure now that I didnt just convert on my own. Then the next day, I went home from the hospital and I began to have trouble breathing. It seemed that if I did any physical activity, I would be out of breath. The Dr. sent me to the hospital, they ran all the tests and nothing came up anywhere on the charts. I did have an unusually low oxygen level in my ABG test however, the pulse oximiter showed a normal profusion rate. Later, I was diagnosed with LAF. paroxysmal. I was able to breath better....seemingly on my own after 1 day.
Originally, my Dr. put my in Tambacour....It did not affect me well, I felt horrible... after two days I discontinued it. While on this medication, my heart rate dropped to 50-55 bpm, I also became flu like sick...I felt, in general, like I was dying. We use no medication to treat this other than supplements and exercise now.
Most of my atrial fibrillations, as far as I can tell, are vagal in nature. That is, they seem to follow a pattern of people diagnosed with vagal oriented atrial fibrillations. My Doctor has not confirmed this or unconfirmed this. The "afibs" typically happen after I eat, when I drink something super cold, or later in the day. I have had 10 episodes since November of 2002.
Descriptions of episodes and triggers that I believe seem to be a factor:
One episode, started after I drank an ice cold, sugar loaded, iced mixed, orange flavored drink
One episode, started after I ate an unusually large portion of food, while I was out at a restaurant.
One episode, started after I ate pizza at Pizza Hut, this was not a large portion... I have since found out that MSG is a possible trigger for me......Pizza Hut Pizza has the highest non-natural forming MSG in their pizza of all the chains.
Three episodes started in the evening after I was lounging watching tv, carried my 3 year old son up the stairs, my heart rate elevated, then came down and minutes later I went into afib.
Only one episode actually started in the day time while I was actively working... I had finished cutting the grass in our yard, and then I helped my wife dig up a shrubbery in her garden, I started feeling funny, while digging, stopped, and minutes later I went into afib.
One episode started after I received some stressful news about my grandfather's passing...
The other two, I don't remember what seemed to trigger them, I just know I had them.
My episodes last usually less than 8 hours, but have never gone on for more than 18 hours.
************************
Misc. Information I feel is important.
I have skipped beats and double beats at least once every other day. Some days they are more noticeable. If I ignore these beats, I could easily go into afib, if I don't watch what I do, eating, moving, stressing, etc.... I am fairly certain, I could bring my self into afib, once I sense these irregular beats and would continue to do certain things that I now call "triggers"....eating more, lots of sugar, run up stairs....try not to reduce stress, etc...
I have always had good blood pressure. This changed after about 3 months after my first episode. My blood pressure now fluctuates from 101/60 to 165/110. Prior to this, it was always 122/83 or within a 5 point range in either direction. I was prescribed Norvasc 5mg to help with this when I do have the high blood pressure.
My Cholesterol was abnormally low, prior to my first episode. I believe some of my blood works will show this, combined total 73. This was typical when I was on the Atkins diet. When I am off the diet the cholesterol seems to measure within normal ranges.
Many times, I experience unusual stomach gas pains...I never had these before these episodes started. Usually, if I can get the gas out, by twisting and burping, the unusual beats will start to subside. I have been checked for stomach problems with the scope and nothing significant turned up. I do know that, sometimes the odd beats will subside if, while I have these pains, I take bismuth...normal anti-acids do not seem to work as well.
When experiencing these odd beats, or sensations in pulse, I always tire and get exhausted right away. I become almost lethargic. Sometimes, going into afib is a better experience than having these missed/double beats. Usually these extra/skipped beats are accompanied by an elevated pulse rate of between 20-35 bpm....on a rare occasion- even higher.
Before I started taking larger doses of magnesium(1000-1500mg), I would experience odd sensations in my heart area all day, a tingling, tickling feeling, almost electric. When I get off the magnesium, this returns. It is very disturbing. I also have a pin point focal annoyance near the left lower area of my heart from time to time, it is not angina like, nor do I easily get fatigued when I have this, by itself, but it is noticeable
I have always experienced headaches, my whole life. They would always happen just to the rear of my head, behind and below my right ear... Since the afibs... I no longer get these and now the headaches, which are more rare, are in the front of my head, above my eyebrows.... I don't know if this means anything ,but it is different.
Sometimes just before the afib, I am encompassed by a almost drunk like good feeling, high that usually precedes the afib or irregular rhythms by 10-30 minutes. Some days I feel great.... most I feel just under avera
J. Pisano
My Story of AFIB.
When I first had my atrial fib, I was very far into the Atkins diet, and nutritional defunct (I did not understand nutritional balance, as well as I should have at that point- nutrition necessity, that is). Regardless, I was under a lot of stress, as well and had a severe bout of afib. I went in to the ER. They followed a standard protocol of Heparim and Vermapil . they stopped my heart 3 times. Their hope was that when it restarted- it would be in a/sinus rhythm. It didn't. They took me up to intensive care, probably due to my tachycardia and called in the cardiologist.
He administered an IV drug of which I am not sure of the name and told me that it had a 50% chance of working. Anyway, I converted after about 8 hours . I am not so sure now that I didnt just convert on my own. Then the next day, I went home from the hospital and I began to have trouble breathing. It seemed that if I did any physical activity, I would be out of breath. The Dr. sent me to the hospital, they ran all the tests and nothing came up anywhere on the charts. I did have an unusually low oxygen level in my ABG test however, the pulse oximiter showed a normal profusion rate. Later, I was diagnosed with LAF. paroxysmal. I was able to breath better....seemingly on my own after 1 day.
Originally, my Dr. put my in Tambacour....It did not affect me well, I felt horrible... after two days I discontinued it. While on this medication, my heart rate dropped to 50-55 bpm, I also became flu like sick...I felt, in general, like I was dying. We use no medication to treat this other than supplements and exercise now.
Most of my atrial fibrillations, as far as I can tell, are vagal in nature. That is, they seem to follow a pattern of people diagnosed with vagal oriented atrial fibrillations. My Doctor has not confirmed this or unconfirmed this. The "afibs" typically happen after I eat, when I drink something super cold, or later in the day. I have had 10 episodes since November of 2002.
Descriptions of episodes and triggers that I believe seem to be a factor:
One episode, started after I drank an ice cold, sugar loaded, iced mixed, orange flavored drink
One episode, started after I ate an unusually large portion of food, while I was out at a restaurant.
One episode, started after I ate pizza at Pizza Hut, this was not a large portion... I have since found out that MSG is a possible trigger for me......Pizza Hut Pizza has the highest non-natural forming MSG in their pizza of all the chains.
Three episodes started in the evening after I was lounging watching tv, carried my 3 year old son up the stairs, my heart rate elevated, then came down and minutes later I went into afib.
Only one episode actually started in the day time while I was actively working... I had finished cutting the grass in our yard, and then I helped my wife dig up a shrubbery in her garden, I started feeling funny, while digging, stopped, and minutes later I went into afib.
One episode started after I received some stressful news about my grandfather's passing...
The other two, I don't remember what seemed to trigger them, I just know I had them.
My episodes last usually less than 8 hours, but have never gone on for more than 18 hours.
************************
Misc. Information I feel is important.
I have skipped beats and double beats at least once every other day. Some days they are more noticeable. If I ignore these beats, I could easily go into afib, if I don't watch what I do, eating, moving, stressing, etc.... I am fairly certain, I could bring my self into afib, once I sense these irregular beats and would continue to do certain things that I now call "triggers"....eating more, lots of sugar, run up stairs....try not to reduce stress, etc...
I have always had good blood pressure. This changed after about 3 months after my first episode. My blood pressure now fluctuates from 101/60 to 165/110. Prior to this, it was always 122/83 or within a 5 point range in either direction. I was prescribed Norvasc 5mg to help with this when I do have the high blood pressure.
My Cholesterol was abnormally low, prior to my first episode. I believe some of my blood works will show this, combined total 73. This was typical when I was on the Atkins diet. When I am off the diet the cholesterol seems to measure within normal ranges.
Many times, I experience unusual stomach gas pains...I never had these before these episodes started. Usually, if I can get the gas out, by twisting and burping, the unusual beats will start to subside. I have been checked for stomach problems with the scope and nothing significant turned up. I do know that, sometimes the odd beats will subside if, while I have these pains, I take bismuth...normal anti-acids do not seem to work as well.
When experiencing these odd beats, or sensations in pulse, I always tire and get exhausted right away. I become almost lethargic. Sometimes, going into afib is a better experience than having these missed/double beats. Usually these extra/skipped beats are accompanied by an elevated pulse rate of between 20-35 bpm....on a rare occasion- even higher.
Before I started taking larger doses of magnesium(1000-1500mg), I would experience odd sensations in my heart area all day, a tingling, tickling feeling, almost electric. When I get off the magnesium, this returns. It is very disturbing. I also have a pin point focal annoyance near the left lower area of my heart from time to time, it is not angina like, nor do I easily get fatigued when I have this, by itself, but it is noticeable
I have always experienced headaches, my whole life. They would always happen just to the rear of my head, behind and below my right ear... Since the afibs... I no longer get these and now the headaches, which are more rare, are in the front of my head, above my eyebrows.... I don't know if this means anything ,but it is different.
Sometimes just before the afib, I am encompassed by a almost drunk like good feeling, high that usually precedes the afib or irregular rhythms by 10-30 minutes. Some days I feel great.... most I feel just under avera
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Sammy
Re: My Story. October 14, 2003 07:36PM |
Mr. Pisano,I only hope and wish that others interested in AF,ablation and all the related subjects will read your post and bring it along when meeting with a potential surgeon/EP etc..You asked all the right questions and gave them more info than they ever hear from a patient..It`s great when we`re prepared and can be on a semi-even playing field with the doctors who we put our trust and life on the line with.
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Jim w.
Re: My Story. October 15, 2003 05:34AM |
Pisano,
Thank you so much for your post. One question I have(and will ask-maybe you already know) IS why don't they map in the first procedure using the carto mapping cath? It would, of course, take longer but then maybe there would be a lesser need for a second procedure? I know Dr. Natale takes about an hour and a half for him to do the procedure, and some days he does 3-4 procedures. (That is about 30K/ day-not bad) I say this because Dr. Wharton at MUSC and others do mapping along with complete PVI ablation. Their procedure takes a lot longer-sometimes 8-12 hours on the table, but they feel there may be a lesser chance of needing a second procedure. I honestly do not know what to think about success rates, it just seems to me that mapping along with complete ablation of all PVs would make more sense?
I say all of this when I am supposed to have a PVI procedure with Dr. Natale this Friday(he is doing 3 PVIs that day). Dr. Wharton and other EPs who do mapping along with complete PVI only see one patient the day of the procedure. What do you think about this? I'd like to hear from others too.
Again, thanks for the information-it helps.
Jim W.
Thank you so much for your post. One question I have(and will ask-maybe you already know) IS why don't they map in the first procedure using the carto mapping cath? It would, of course, take longer but then maybe there would be a lesser need for a second procedure? I know Dr. Natale takes about an hour and a half for him to do the procedure, and some days he does 3-4 procedures. (That is about 30K/ day-not bad) I say this because Dr. Wharton at MUSC and others do mapping along with complete PVI ablation. Their procedure takes a lot longer-sometimes 8-12 hours on the table, but they feel there may be a lesser chance of needing a second procedure. I honestly do not know what to think about success rates, it just seems to me that mapping along with complete ablation of all PVs would make more sense?
I say all of this when I am supposed to have a PVI procedure with Dr. Natale this Friday(he is doing 3 PVIs that day). Dr. Wharton and other EPs who do mapping along with complete PVI only see one patient the day of the procedure. What do you think about this? I'd like to hear from others too.
Again, thanks for the information-it helps.
Jim W.
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Carol
Re: My Story. October 15, 2003 06:43AM |
You seem to be pretty savy about afib.
I picked up on your mention of drinking sugary drinks and think that there may be a connection between possible hypoglycemia and your afib. See the discussion on this board "Gerd, H20, glucose, K. Stress and LAF." (10-12-03 ) Incidentally, one can feel really tired not only from an episode of afib, but from hypoglycemia too.
I see high magnesium dosing, but is your calcium intake counterbalancing the high amount of magnesium that you take? Do you take taurine along with magnesium?
How much water do you drink a day?
Just some thoughts..
Carol
I picked up on your mention of drinking sugary drinks and think that there may be a connection between possible hypoglycemia and your afib. See the discussion on this board "Gerd, H20, glucose, K. Stress and LAF." (10-12-03 ) Incidentally, one can feel really tired not only from an episode of afib, but from hypoglycemia too.
I see high magnesium dosing, but is your calcium intake counterbalancing the high amount of magnesium that you take? Do you take taurine along with magnesium?
How much water do you drink a day?
Just some thoughts..
Carol
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yypo
Re: My Story. October 15, 2003 09:22AM |
As to the extent of mapping, I have observed in the literature that those practioners using extensive mapping are those that do not ablate all four pulmonary veins routinely, but rather selectively ablate based on the mapping. I believe their success rates are much lower since mapping is imperfect. (Does anyone have any claims by other US practioners of 80% and 95% success rates as claimed by the CC?)
Since the Cleveland Clinic practioners routinely ablate all four veins, mapping is relatively less important.
The reason that they sometimes need to do touchups is not related to the lack of initial mapping. Rather it is due to imperfections in their ablation procedure--i.e. in some cases due to the irregularity of the PV surfaces, they don't complete the circumferential lesions in such a way that these lesions block out all the afib signals. Also, some of the unsuccessful incidences may be due to afib originating outside the PV's as is documented in the literature.
Since the Cleveland Clinic practioners routinely ablate all four veins, mapping is relatively less important.
The reason that they sometimes need to do touchups is not related to the lack of initial mapping. Rather it is due to imperfections in their ablation procedure--i.e. in some cases due to the irregularity of the PV surfaces, they don't complete the circumferential lesions in such a way that these lesions block out all the afib signals. Also, some of the unsuccessful incidences may be due to afib originating outside the PV's as is documented in the literature.
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Char
Re: My Story. October 15, 2003 09:25AM |
To J. Pisano,
Thanks so much for your complete Q&A. We learn more from each other than anyone. I liked the question re. flutter after an ablation which exactly applies to my situation. Jim addresses the issue by asking, "why don't they map in the first procedure using the carto mapping cath? Excellent question and I fear the answer is probably that it takes too long. (Only my humble guess.)
Dr. Natale did my ablation for AFib two months ago. It appears that I am in the 10-15% who will need the so-called 'touch-up,' although I hate to admit it to myself. Since about the second week of Sept. I have had no indication of continued fib., however, but now have a serious problem with flutter. I have been cardioverted three times recently, which have lasted from 1 to 3 days. The only times I had been in flutter before the ablation were drug-induced....trying rhythmol and flecainide. (Flecainide kept me out of AFib. the longest....before flutter set in and I ended up in the ER.) Then I would go back to A-Fib only....until the ablation.
Out of desperation, almost two weeks ago, I began to try flec. (on my own)at a much reduced doseage....100 mg. q. 12 hrs. (I was on 300mg. every 24 hrs. during the first trial.) It converted me this time and has kept me out of flutter, but it gives me a constant headache. Four days ago I tried to wean off of it at 50 mg. q. 12 hrs. and woke up at 3AM in flutter at 183 bpm. I had trouble staying alert enough to transmit it to CC. So I'm back on Flec. at 100 mg. every 12 hrs., afraid to quit taking it, and waiting for an answer from CC as to whether I should stay on it longer before trying to get off, hoping that the flutter will go away in the meantime......or schedule an ablation for flutter now.
I don't understand how Fib. could mask Flutter to the extent that it would be totally undetectable during the procedure if adequate/any mapping is done. I'm sure there will be a good answer, but one can't help but wonder if enough time is taken to do it all the first time. I am, however, very thankful to be rid of Afib. (unless Flutter is now masking the AFib.) Flutter is much harder to manage for me since I have not been able to control the rate with anything...... until I tried Flec. a second time. My rate in flutter varies from 148 to 185 and is very uncomfortable! Someone has to be in that 10-15%, I guess. Just remember....those of you pending relief for AFib....the odds are greatly in your favor and it is wonderful to be rid of the AFib.! I hate the thought of another ablation, but the drs. here and at CC confirm that it is much easier, less risk, and almost always successful. Char
Thanks so much for your complete Q&A. We learn more from each other than anyone. I liked the question re. flutter after an ablation which exactly applies to my situation. Jim addresses the issue by asking, "why don't they map in the first procedure using the carto mapping cath? Excellent question and I fear the answer is probably that it takes too long. (Only my humble guess.)
Dr. Natale did my ablation for AFib two months ago. It appears that I am in the 10-15% who will need the so-called 'touch-up,' although I hate to admit it to myself. Since about the second week of Sept. I have had no indication of continued fib., however, but now have a serious problem with flutter. I have been cardioverted three times recently, which have lasted from 1 to 3 days. The only times I had been in flutter before the ablation were drug-induced....trying rhythmol and flecainide. (Flecainide kept me out of AFib. the longest....before flutter set in and I ended up in the ER.) Then I would go back to A-Fib only....until the ablation.
Out of desperation, almost two weeks ago, I began to try flec. (on my own)at a much reduced doseage....100 mg. q. 12 hrs. (I was on 300mg. every 24 hrs. during the first trial.) It converted me this time and has kept me out of flutter, but it gives me a constant headache. Four days ago I tried to wean off of it at 50 mg. q. 12 hrs. and woke up at 3AM in flutter at 183 bpm. I had trouble staying alert enough to transmit it to CC. So I'm back on Flec. at 100 mg. every 12 hrs., afraid to quit taking it, and waiting for an answer from CC as to whether I should stay on it longer before trying to get off, hoping that the flutter will go away in the meantime......or schedule an ablation for flutter now.
I don't understand how Fib. could mask Flutter to the extent that it would be totally undetectable during the procedure if adequate/any mapping is done. I'm sure there will be a good answer, but one can't help but wonder if enough time is taken to do it all the first time. I am, however, very thankful to be rid of Afib. (unless Flutter is now masking the AFib.) Flutter is much harder to manage for me since I have not been able to control the rate with anything...... until I tried Flec. a second time. My rate in flutter varies from 148 to 185 and is very uncomfortable! Someone has to be in that 10-15%, I guess. Just remember....those of you pending relief for AFib....the odds are greatly in your favor and it is wonderful to be rid of the AFib.! I hate the thought of another ablation, but the drs. here and at CC confirm that it is much easier, less risk, and almost always successful. Char
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Jim w.
Re: My Story. October 15, 2003 10:44AM |
yypo,
Dr. Wharton at MUSC claims 80% success & 95% success for a touch up procedure.. I believe he is very conservative. He does indeed ablate ALL Pul veins. He does mapping before and after the PVI ablation. It will be interesting to see why CCF has elected to stop mapping procedures on the first visit. This answer needs to be a good one, or I'm off to see Dr. Wharton-otherwise I will be ablated this Friday @ the CC.
Jim W.
Dr. Wharton at MUSC claims 80% success & 95% success for a touch up procedure.. I believe he is very conservative. He does indeed ablate ALL Pul veins. He does mapping before and after the PVI ablation. It will be interesting to see why CCF has elected to stop mapping procedures on the first visit. This answer needs to be a good one, or I'm off to see Dr. Wharton-otherwise I will be ablated this Friday @ the CC.
Jim W.
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J. Pisano
Re: My Story. October 15, 2003 04:22PM |
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njb
Re: My Story. October 15, 2003 05:07PM |
To J. Pisano-- thank-you VERYMUCH for your detailed account of your encounter with Dr. Tchou & Dr. Jones.! You really covered a lot of ground.
To Jim & others considering a PVI ablation:
This is a relatively minor issue, but I wish I had known about it before hand so thought I would pass this along.
I got a "small banana sized" hematoma(felt like a hard lump) in my groin along with a 12-15" triangular black & blue mark and some related tenderness. When I complained about this everyone at the Clinic said this was normal. But they only saw it up to 24 hrs. after the procedure. The black & blue area really grew over the next couple of weeks & then faded. The hematoma was a collection of blood from "lots & lots & lots of blood thinners" which they needed to use as my regular EP explained. He said I might always have a lump. However, now after 10 weeks, it does seem to be shrinking. No, it's not a major problem, but it did bother me at first. I was concerned that if I rode my bike & bumped it or something that it might make it worse. Clinic said it wouldn't. By the way, I asked my regular EP to take a look after a 2 week followup & if I remember right he said they used a 12" French catheter on the left side of my groin.
So, all together I had 4 holes--
the largest- about the size of a drinking straw- on the left side of groin
2 smaller - next to each other on the right side of groin
one small on the right side of lower neck-- to access the superior vena cava
Also, another relatively minor detail-- you get wrapped up like a mummy right before the procedure. The doc uses your body as a table & it prevents you from moving. But honestly, I really didn't care-- I was so glad to have an opportunity to be rid of this monster. Plus you get some very nice drugs to put you in a very relaxed state. After that, I didn't remember hardly anything until it was time to wake up. Think it took about 3 1/2 hours.
One last detail- I had to inject myself at home with Lovenox-- I think it was twice a day. I eat Spinach which is high in Vit. K & refuse to stop. Vit.K acts as a coagulant. So, I had to give myself injections for about 1 week. The site of the injection would grow into a golf ball size black & blue mark--because you are injecting a blood thinner. Unpleasant, but still worth it if it increased my chances of curing the damn afib.
Will keep all of you in my prayers & ask for yours in return.
njb
To Jim & others considering a PVI ablation:
This is a relatively minor issue, but I wish I had known about it before hand so thought I would pass this along.
I got a "small banana sized" hematoma(felt like a hard lump) in my groin along with a 12-15" triangular black & blue mark and some related tenderness. When I complained about this everyone at the Clinic said this was normal. But they only saw it up to 24 hrs. after the procedure. The black & blue area really grew over the next couple of weeks & then faded. The hematoma was a collection of blood from "lots & lots & lots of blood thinners" which they needed to use as my regular EP explained. He said I might always have a lump. However, now after 10 weeks, it does seem to be shrinking. No, it's not a major problem, but it did bother me at first. I was concerned that if I rode my bike & bumped it or something that it might make it worse. Clinic said it wouldn't. By the way, I asked my regular EP to take a look after a 2 week followup & if I remember right he said they used a 12" French catheter on the left side of my groin.
So, all together I had 4 holes--
the largest- about the size of a drinking straw- on the left side of groin
2 smaller - next to each other on the right side of groin
one small on the right side of lower neck-- to access the superior vena cava
Also, another relatively minor detail-- you get wrapped up like a mummy right before the procedure. The doc uses your body as a table & it prevents you from moving. But honestly, I really didn't care-- I was so glad to have an opportunity to be rid of this monster. Plus you get some very nice drugs to put you in a very relaxed state. After that, I didn't remember hardly anything until it was time to wake up. Think it took about 3 1/2 hours.
One last detail- I had to inject myself at home with Lovenox-- I think it was twice a day. I eat Spinach which is high in Vit. K & refuse to stop. Vit.K acts as a coagulant. So, I had to give myself injections for about 1 week. The site of the injection would grow into a golf ball size black & blue mark--because you are injecting a blood thinner. Unpleasant, but still worth it if it increased my chances of curing the damn afib.
Will keep all of you in my prayers & ask for yours in return.
njb
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