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[ablation failed now what?]
Author: Floyd (157.91.77.---)
Date: 08-23-02 12:14
Hello, I am so glad i found this web sight. 2 weeks ago i had the alcohol septal ablation done and the first day they said it went great. The second day they informed me that the gradient had returned to where it was before. Now they are wanting to look at other things that may be causing my symptoms. ie shorness of breath, weariness and so so on. I had my surgery done at methodist hospital in indianapolis and they have not done many there. i also now have some chest pains since the ablation and they are basically telling me these are in my head. there is only one dr there that thinks open heart surgery is the next option. i do not take drugs well, my body reacts strangely to them. im kind of scared and nervous about this. i said they wanted to look at other things im going to have an upper and lower gi soon and other invasive procedures. why didnt they do these first? i need advice from others who have been where i am.
thank you
Floyd
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[Re: ablation failed now what?]
Author: Lisa Salberg (208.47.172.---)
Date: 08-23-02 12:19
Floyd,
Well I can tell you you are in the right place and we can help you get to the care you need. The first step is to get you to a specialist who understands the full range of the disease. You have treatment options... this is the most important thing I can say right off the top!
Call the HCMA office and we can talk more about your situation...I will be in the office Saturday between 10:30-2:00 EST - I do have a few other calls so if it is busy do try back.
Best wishes,
Lisa Salberg
President
973-983-7429
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[Re: ablation failed now what?]
Author: Jerry Salzman (---.indy.rr.com)
Date: 08-24-02 11:21
Floyd,
You make me happy I decided not to see Dr. Brown at Methodist. Do yourself a favor, the 6 hour drive to Cleveland is not that bad. The first time I called Methodist and asked about HCM, the main cardiac operator had no idea what I was talking about. I finally got to Dr. Brown's office but it took 10 days for a return call so I could find out they do myectomies. Around 5 a year. I actually go to St. Vincent's and they do 3 a year. I didn't know Methodist did ablations, they have done 11 at St. Vincent. These are great doctors. In fact the Krannert Institute (part of Methodist is the number 1 place for echos - Cleveland told me that), but there are few HCMs here.
Sorry to be blunt, and Lisa can give you other options besides trhe Cleveland Clinic, if you want, but if Methodist told you an ablation would work, and a day later said it didn't, I wanted let them operate on me. For me the diagnosis changed a little from St. Vincent's to Cleveland Clinic. At St. Vincent's they said they could do an ablation or myectomy. At Cleveland, they found value issues so Tuesday is my myectomy.
Hope this helps.
Jerry
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[Re: ablation failed now what?]
Author: Craig C (---.ph.ph.cox.net)
Date: 08-25-02 20:37
Dear Floyd,
I had an ablation done in April of this year and had the same thing happen to me.
The Dr. told me the day after the procedure that immediately following the operation my gradiant had reduced by 90%. Two days after the operation when I had my Echo all of the gradiant had returned. Needless to say the Dr. was very disappointed and was talking about repeating the procedure in 6 months. In June I had a follow-up Echo with my cardiologist (not the same one that did the ablation) and the results were an 80% reduction in the gradiant. He thinks that immediately following the ablation the affected tissues were swollen and had masked the overall effectiveness of the procedure. After time, and healing, the Echo showed the true effects of the scarring. He seems to think that with more time the gradiant may even reduce more.
I would suggest to you that maybe a second opinion, with more experienced Drs. and hospitals, would be in order before such an invasive surgery (myectomy).
Best of luck to you and your loved ones and I hope that things work out for you.
Sincerely, Craig C
Author: Floyd (157.91.77.---)
Date: 08-23-02 12:14
Hello, I am so glad i found this web sight. 2 weeks ago i had the alcohol septal ablation done and the first day they said it went great. The second day they informed me that the gradient had returned to where it was before. Now they are wanting to look at other things that may be causing my symptoms. ie shorness of breath, weariness and so so on. I had my surgery done at methodist hospital in indianapolis and they have not done many there. i also now have some chest pains since the ablation and they are basically telling me these are in my head. there is only one dr there that thinks open heart surgery is the next option. i do not take drugs well, my body reacts strangely to them. im kind of scared and nervous about this. i said they wanted to look at other things im going to have an upper and lower gi soon and other invasive procedures. why didnt they do these first? i need advice from others who have been where i am.
thank you
Floyd
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: ablation failed now what?]
Author: Lisa Salberg (208.47.172.---)
Date: 08-23-02 12:19
Floyd,
Well I can tell you you are in the right place and we can help you get to the care you need. The first step is to get you to a specialist who understands the full range of the disease. You have treatment options... this is the most important thing I can say right off the top!
Call the HCMA office and we can talk more about your situation...I will be in the office Saturday between 10:30-2:00 EST - I do have a few other calls so if it is busy do try back.
Best wishes,
Lisa Salberg
President
973-983-7429
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: ablation failed now what?]
Author: Jerry Salzman (---.indy.rr.com)
Date: 08-24-02 11:21
Floyd,
You make me happy I decided not to see Dr. Brown at Methodist. Do yourself a favor, the 6 hour drive to Cleveland is not that bad. The first time I called Methodist and asked about HCM, the main cardiac operator had no idea what I was talking about. I finally got to Dr. Brown's office but it took 10 days for a return call so I could find out they do myectomies. Around 5 a year. I actually go to St. Vincent's and they do 3 a year. I didn't know Methodist did ablations, they have done 11 at St. Vincent. These are great doctors. In fact the Krannert Institute (part of Methodist is the number 1 place for echos - Cleveland told me that), but there are few HCMs here.
Sorry to be blunt, and Lisa can give you other options besides trhe Cleveland Clinic, if you want, but if Methodist told you an ablation would work, and a day later said it didn't, I wanted let them operate on me. For me the diagnosis changed a little from St. Vincent's to Cleveland Clinic. At St. Vincent's they said they could do an ablation or myectomy. At Cleveland, they found value issues so Tuesday is my myectomy.
Hope this helps.
Jerry
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: ablation failed now what?]
Author: Craig C (---.ph.ph.cox.net)
Date: 08-25-02 20:37
Dear Floyd,
I had an ablation done in April of this year and had the same thing happen to me.
The Dr. told me the day after the procedure that immediately following the operation my gradiant had reduced by 90%. Two days after the operation when I had my Echo all of the gradiant had returned. Needless to say the Dr. was very disappointed and was talking about repeating the procedure in 6 months. In June I had a follow-up Echo with my cardiologist (not the same one that did the ablation) and the results were an 80% reduction in the gradiant. He thinks that immediately following the ablation the affected tissues were swollen and had masked the overall effectiveness of the procedure. After time, and healing, the Echo showed the true effects of the scarring. He seems to think that with more time the gradiant may even reduce more.
I would suggest to you that maybe a second opinion, with more experienced Drs. and hospitals, would be in order before such an invasive surgery (myectomy).
Best of luck to you and your loved ones and I hope that things work out for you.
Sincerely, Craig C