HCMA FORUM ARCHIVE
12-17-2002, 10:10 AM
[SURGERY]
Author: NURSE NANCY (207.109.18.---)
Date: 03-01-02 18:00
HOCM Members my son Phillip had a myectomy on 2/27/2002. It went great, he is up and walking today and all tubes are out and the 2 valves that were in trouble due to the back pressure are normal and no leaking. He was done at the MAYO Clinic. in Rochester , Minnesota. The MD 's there are the leading experts in the field of HOCM /HCM . You can go to the Mayo web site : MayoClinic.Com and then enter Dr. Nishimura or Nishamura. He leads the HOCM?HCM clinic and studies and research for this disease. The surgeon who is the best in the world and has basically perfected this surgery and also one calle An Apical debulking for the HCM patients who have thickening at the apex . GREAT RESULTS> NN
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: sandra sullivan (---.dialup.mindspring.com)
Date: 03-05-02 19:23
Dear Nurse Nancy,
I am so happy everything went so well for you and your son. It is so heart lifting to read good news. I will keep you and your son in my prayers.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: sarah beckley (---.dsl.mindspring.com)
Date: 03-07-02 02:39
Dear Nancy,
I've been to the Mayo, too, and they do rock!!! I'm so happy for you and Phillip. Please keep us posted on his progress.
Thanks for the good news.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: Terry Cash (64.219.42.---)
Date: 03-07-02 11:50
Dear Nancy,
My son has hypertrophic cardiomyopathy. He was playing basketball on Nov. 2, 1998 when he dropped. His coach performed CPR until emergency crew arrived and shocked him. He was life flighted to Tulsa, Ok hospital where he received a Medtronics dual pacemaker and defibrillator. We feel that we are coping well until he gets shocked. Jordan started in 2 sports and now can do very little. His unit is set to shock him when his heart beats 200. He is on Toprol XL 100mg every morning. He is a Soph. in college and is a very postive young man. He has trouble coping with getting shocked for very little activity. Could you give us any advice.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: midgerollins (---.obmo.socket.net)
Date: 03-08-02 16:16
Nancy, I agree Mayo is the greatest. Congratulations on your sons surgery. I had the same 20 years ago by Dr. Puga at Mayo. Surgery is still considered a success even though I have developed some more complications of HCM, I am 55 and Mayo keeps me ticking.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: wendy (---.proxy.aol.com)
Date: 03-14-02 03:33
That is wonderful news. I am new to all of this cardiomyopathy stuff. My daughter Mikahla is 4 1/2 years old and has hypertrophic cardiomyopathy of both right and left venticals. Would this surgery be an option for her at some point. Her Cardiologist have never mentioned it. They say there is no surgical treatment for her only transplantation. At this point she is being treated with meds lasixs, inderol, and enalipril. She is doing ok. They tell me that they dont know what will happen but that at some point if she has more and more trouble then ultimitly transplant may happen. She went her whole life thus far until October w/o meds. Just closely monitored. They say that she has that much going in her favor. In October out of the blue she started getting bloated, liver enlarged and was having "severe congestive heart failure". She underwent a pericardio centesis. and cath. During the cath she had a heart block, and they put in a pacer wire-- which came out 2 days later. The doctors say that he is confident that she wont have heart block again. I am so worried about her. I just stumbled upon this website and I am just amazed at the wealth of support and information I have found. Please respond back as I would love some insight from another MOM with simular situations. I am so glad to hear that your soon is bouncing back so well. I will think of him in my prayers, thanks for reading all of this- I guess I am just so overwhelmed at this web page. Thanks again, Wendy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: sarah beckley (---.dsl.mindspring.com)
Date: 03-15-02 03:38
Dear Wendy,
You may want to think about getting referred to the Mayo Clinic. They have a mini-deptartment devoted to HCM and --as we've all agreed--they know their stuff.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: CH (---.nas48.philadelphia1.pa.us.da.qwest.ne)
Date: 03-23-02 22:42
where is the mayo clinic?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: Bob (---.dyn.optonline.net)
Date: 03-24-02 00:30
CH,
Their main location is in Rochester, Minnesota. You may want to check the website www.mayoclinic.org.
Bob
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: KAREN SHAW (64.215.87.---)
Date: 03-26-02 08:34
THANKS FOR THE INFO ON YOUR SON. I AM 40 YRS OLD AND HAD A
MYECTOMY 2 YEARS AGO AT THE MAYO CLINIC. I WAS VERY IMPRESSED
WITH THE MAYO CLINIC AND ST. MARYS HOSPITAL. I AM DOING WELL
TODAY. I DO NOT HAVE MANY SYMTOMS AT THIS POINT.
LET ME KNOW IF YOU HAVE ANY QUESTIONS.
SINCERELY,
KAREN SHAW
Author: NURSE NANCY (207.109.18.---)
Date: 03-01-02 18:00
HOCM Members my son Phillip had a myectomy on 2/27/2002. It went great, he is up and walking today and all tubes are out and the 2 valves that were in trouble due to the back pressure are normal and no leaking. He was done at the MAYO Clinic. in Rochester , Minnesota. The MD 's there are the leading experts in the field of HOCM /HCM . You can go to the Mayo web site : MayoClinic.Com and then enter Dr. Nishimura or Nishamura. He leads the HOCM?HCM clinic and studies and research for this disease. The surgeon who is the best in the world and has basically perfected this surgery and also one calle An Apical debulking for the HCM patients who have thickening at the apex . GREAT RESULTS> NN
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: sandra sullivan (---.dialup.mindspring.com)
Date: 03-05-02 19:23
Dear Nurse Nancy,
I am so happy everything went so well for you and your son. It is so heart lifting to read good news. I will keep you and your son in my prayers.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: sarah beckley (---.dsl.mindspring.com)
Date: 03-07-02 02:39
Dear Nancy,
I've been to the Mayo, too, and they do rock!!! I'm so happy for you and Phillip. Please keep us posted on his progress.
Thanks for the good news.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: Terry Cash (64.219.42.---)
Date: 03-07-02 11:50
Dear Nancy,
My son has hypertrophic cardiomyopathy. He was playing basketball on Nov. 2, 1998 when he dropped. His coach performed CPR until emergency crew arrived and shocked him. He was life flighted to Tulsa, Ok hospital where he received a Medtronics dual pacemaker and defibrillator. We feel that we are coping well until he gets shocked. Jordan started in 2 sports and now can do very little. His unit is set to shock him when his heart beats 200. He is on Toprol XL 100mg every morning. He is a Soph. in college and is a very postive young man. He has trouble coping with getting shocked for very little activity. Could you give us any advice.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: midgerollins (---.obmo.socket.net)
Date: 03-08-02 16:16
Nancy, I agree Mayo is the greatest. Congratulations on your sons surgery. I had the same 20 years ago by Dr. Puga at Mayo. Surgery is still considered a success even though I have developed some more complications of HCM, I am 55 and Mayo keeps me ticking.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: wendy (---.proxy.aol.com)
Date: 03-14-02 03:33
That is wonderful news. I am new to all of this cardiomyopathy stuff. My daughter Mikahla is 4 1/2 years old and has hypertrophic cardiomyopathy of both right and left venticals. Would this surgery be an option for her at some point. Her Cardiologist have never mentioned it. They say there is no surgical treatment for her only transplantation. At this point she is being treated with meds lasixs, inderol, and enalipril. She is doing ok. They tell me that they dont know what will happen but that at some point if she has more and more trouble then ultimitly transplant may happen. She went her whole life thus far until October w/o meds. Just closely monitored. They say that she has that much going in her favor. In October out of the blue she started getting bloated, liver enlarged and was having "severe congestive heart failure". She underwent a pericardio centesis. and cath. During the cath she had a heart block, and they put in a pacer wire-- which came out 2 days later. The doctors say that he is confident that she wont have heart block again. I am so worried about her. I just stumbled upon this website and I am just amazed at the wealth of support and information I have found. Please respond back as I would love some insight from another MOM with simular situations. I am so glad to hear that your soon is bouncing back so well. I will think of him in my prayers, thanks for reading all of this- I guess I am just so overwhelmed at this web page. Thanks again, Wendy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: sarah beckley (---.dsl.mindspring.com)
Date: 03-15-02 03:38
Dear Wendy,
You may want to think about getting referred to the Mayo Clinic. They have a mini-deptartment devoted to HCM and --as we've all agreed--they know their stuff.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: CH (---.nas48.philadelphia1.pa.us.da.qwest.ne)
Date: 03-23-02 22:42
where is the mayo clinic?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: Bob (---.dyn.optonline.net)
Date: 03-24-02 00:30
CH,
Their main location is in Rochester, Minnesota. You may want to check the website www.mayoclinic.org.
Bob
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: SURGERY]
Author: KAREN SHAW (64.215.87.---)
Date: 03-26-02 08:34
THANKS FOR THE INFO ON YOUR SON. I AM 40 YRS OLD AND HAD A
MYECTOMY 2 YEARS AGO AT THE MAYO CLINIC. I WAS VERY IMPRESSED
WITH THE MAYO CLINIC AND ST. MARYS HOSPITAL. I AM DOING WELL
TODAY. I DO NOT HAVE MANY SYMTOMS AT THIS POINT.
LET ME KNOW IF YOU HAVE ANY QUESTIONS.
SINCERELY,
KAREN SHAW