HCMA FORUM ARCHIVE
12-17-2002, 11:17 AM
[HOCM and alcohol treatment]
Author: Jolanda (195.121.244.---)
Date: 03-25-02 15:10
My father had HOCM. He was treated 4 weeks ago with the alcohol method (TASH). They injected alcohol in three vessels. Unfortunately, the alcohol came into the back wall of the heart, causing a heart attack there. This caused his heart to stand still twice in the following two hours. After reanimation he lived for one more week.
We were not aware of the risks of this treatment. Can anyone tell me more about how often this treatment is given and what the results are?
Sorry about my pour English, i'm from Holland.
Brgds, Jolanda
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: HOCM and alcohol treatment]
Author: Sarah B. (---.dsl.mindspring.com)
Date: 03-27-02 23:43
Dear Jolanda,
I'm so sorry for your loss. We lost my dad on Christmas morning two years ago to medical malpractice, so I know exactly how you feel.
Alcohol ablation is relatively new and the info I found on the web indicates a 90% success rate and a 2% risk of sudden death on the table. These are just what I found poking around, other studies may have different numbers.
The HCMA office may have better stats than I do personally.
May I ask if you (and any siblings) have been tested for HCM? Many people get tested on a regular basis since it doesn't show up right away.
Please keep us informed on how you are doing.
with deepest sympahty,
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: HOCM and alcohol treatment]
Author: Amy Woods (164.119.203.---)
Date: 03-28-02 09:25
I had the alcohol ablation done in 1997, I was 24. There were no complications and I feel great now. I was made aware of the potential for the alcohol to go where it wasn't supposed to and my doc told me of the precautions that would be taken to ensure that didn't happen. I'm VERY sorry about your father. Have you found out if the doc's are responsible or if it was a freak accident?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: HOCM and alcohol treatment]
Author: Jolanda (195.121.244.---)
Date: 03-29-02 15:11
Hello,
you were asking me whether or not we are tested before. Well we did not have a genetic test. The doctor who did the alcohol treatment said to us (two hours after the treatment, so before my father dead), that we should consider to be tested.
We did not speak to him anymore after that, but next wednesday we (me and my brother) have an appointment.
I want to ask him questions to be able to judge whether or not he has been making mistakes or not. He did alcohol injections on 3 vessels, which seems to me a lot. Can anyone help me with this?
Brgds,
Jolanda
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: HOCM and alcohol treatment]
Author: Jolanda (195.121.244.---)
Date: 03-29-02 15:37
Hello Sarah,
you said the HCMA office might have better stats. Can you tell me how i can reach them?
Brgds,
Jolanda
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: HOCM and alcohol treatment]
Author: beckley (---.dialup.mindspring.com)
Date: 03-30-02 03:56
E-mail support@hcma-heart.com. Please include your name and mailing address
Mail to: HCMA P.O. Box 306 Hibernia NJ 07842
Call: 8am to 8pm Eastern time ONLY please 973-983-7429
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: HOCM and alcohol treatment]
Author: Rick (---.proxy.aol.com)
Date: 04-11-02 07:17
Hi, I'm a 51 year old male that has shown symptoms for approx. 22 years, I was however not diagnosed with hypertrophic cardio myopathy until 1994. During the undiagnosed period it was a very difficult time for me as I was in a VERY strenuous job (high country logging). I would go to my doctor in the early period (being in great shape at the time) but at the same time knowing that I was slowly running out of gas and tell him that something was wrong and I didn't have the energy that I thought I should have. The out of shape doctors would look me over and tell me that they should be in such good health and send me on the way. This went on for the next few years all the while I was getting worse (ALWAYS LISTEN TO WHAT YOUR BODY TELLS YOU) after a few more visits and many ekg's, and a angiagram I had a doctor tell me that "maybe you should see a psychiatrist as you have nothing wrong".
With that said I began to wonder myself so I struggled along and began to jog and bought myself a complete weight set, after all I MUST be out of shape! It was like pouring water in a bottomless glass, this went on until 1994 and I happened to have a cold and paid a visit to my new family doctor. He noticed a murmur and sent me to a different cardiologist and he ordered an echocardiogram.... Finally an answer and I don't need a shrink?
I'm retired now with a pacemaker installed in 1995 I think it helped some but nothing great. I take 200mg of beta blockers twice a day and I am watching the alcohol treatment results but after reading the above I have to confess I am now going to wait as long as possible to see more results. I am sorry for you at the loss of your Dad. Rick
Author: Jolanda (195.121.244.---)
Date: 03-25-02 15:10
My father had HOCM. He was treated 4 weeks ago with the alcohol method (TASH). They injected alcohol in three vessels. Unfortunately, the alcohol came into the back wall of the heart, causing a heart attack there. This caused his heart to stand still twice in the following two hours. After reanimation he lived for one more week.
We were not aware of the risks of this treatment. Can anyone tell me more about how often this treatment is given and what the results are?
Sorry about my pour English, i'm from Holland.
Brgds, Jolanda
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: HOCM and alcohol treatment]
Author: Sarah B. (---.dsl.mindspring.com)
Date: 03-27-02 23:43
Dear Jolanda,
I'm so sorry for your loss. We lost my dad on Christmas morning two years ago to medical malpractice, so I know exactly how you feel.
Alcohol ablation is relatively new and the info I found on the web indicates a 90% success rate and a 2% risk of sudden death on the table. These are just what I found poking around, other studies may have different numbers.
The HCMA office may have better stats than I do personally.
May I ask if you (and any siblings) have been tested for HCM? Many people get tested on a regular basis since it doesn't show up right away.
Please keep us informed on how you are doing.
with deepest sympahty,
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: HOCM and alcohol treatment]
Author: Amy Woods (164.119.203.---)
Date: 03-28-02 09:25
I had the alcohol ablation done in 1997, I was 24. There were no complications and I feel great now. I was made aware of the potential for the alcohol to go where it wasn't supposed to and my doc told me of the precautions that would be taken to ensure that didn't happen. I'm VERY sorry about your father. Have you found out if the doc's are responsible or if it was a freak accident?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: HOCM and alcohol treatment]
Author: Jolanda (195.121.244.---)
Date: 03-29-02 15:11
Hello,
you were asking me whether or not we are tested before. Well we did not have a genetic test. The doctor who did the alcohol treatment said to us (two hours after the treatment, so before my father dead), that we should consider to be tested.
We did not speak to him anymore after that, but next wednesday we (me and my brother) have an appointment.
I want to ask him questions to be able to judge whether or not he has been making mistakes or not. He did alcohol injections on 3 vessels, which seems to me a lot. Can anyone help me with this?
Brgds,
Jolanda
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: HOCM and alcohol treatment]
Author: Jolanda (195.121.244.---)
Date: 03-29-02 15:37
Hello Sarah,
you said the HCMA office might have better stats. Can you tell me how i can reach them?
Brgds,
Jolanda
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: HOCM and alcohol treatment]
Author: beckley (---.dialup.mindspring.com)
Date: 03-30-02 03:56
E-mail support@hcma-heart.com. Please include your name and mailing address
Mail to: HCMA P.O. Box 306 Hibernia NJ 07842
Call: 8am to 8pm Eastern time ONLY please 973-983-7429
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: HOCM and alcohol treatment]
Author: Rick (---.proxy.aol.com)
Date: 04-11-02 07:17
Hi, I'm a 51 year old male that has shown symptoms for approx. 22 years, I was however not diagnosed with hypertrophic cardio myopathy until 1994. During the undiagnosed period it was a very difficult time for me as I was in a VERY strenuous job (high country logging). I would go to my doctor in the early period (being in great shape at the time) but at the same time knowing that I was slowly running out of gas and tell him that something was wrong and I didn't have the energy that I thought I should have. The out of shape doctors would look me over and tell me that they should be in such good health and send me on the way. This went on for the next few years all the while I was getting worse (ALWAYS LISTEN TO WHAT YOUR BODY TELLS YOU) after a few more visits and many ekg's, and a angiagram I had a doctor tell me that "maybe you should see a psychiatrist as you have nothing wrong".
With that said I began to wonder myself so I struggled along and began to jog and bought myself a complete weight set, after all I MUST be out of shape! It was like pouring water in a bottomless glass, this went on until 1994 and I happened to have a cold and paid a visit to my new family doctor. He noticed a murmur and sent me to a different cardiologist and he ordered an echocardiogram.... Finally an answer and I don't need a shrink?
I'm retired now with a pacemaker installed in 1995 I think it helped some but nothing great. I take 200mg of beta blockers twice a day and I am watching the alcohol treatment results but after reading the above I have to confess I am now going to wait as long as possible to see more results. I am sorry for you at the loss of your Dad. Rick