Tweet
[Septal myectomy and ICD]
Author: Joy Stoops (---.24.1.177.Dial1.LasVegas1.Level3.net)
Date: 10-11-02 13:52
Hi
I have a 9 year old son, who was diagnosed with HCM about 6 years ago. He is asymptomatic , but his pressure gradiants are between 60 - 90, with the septum measuring 21mm.
We are going to have surgery done in December and an ICD implant , hopefully at the same time. I don't want to do this twice. We meet with the surgeon on November 6.
We live in Henderson, NV. Just outside of Las Vegas, and have decided to stay and have the surgery performed close to home versus CA. ( Unless anyone can recommend and great surgeon ) The one we have chosen here does come very highly recommended.
I would like to know about your experiences with children having this procedure done and what to expect. I am a nursing student, so I do know all the medical stuff that goes along with this. Please write me back either here or at my personal e-mail address [email protected]. With any information that might help or knowledge that you have.
Thank you
Joy and Duncan Stoops
Steven age 9 HCM.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Septal myectomy and ICD]
Author: betsy trawick (168.8.208.---)
Date: 10-11-02 14:45
My 17 year old had the procedure done last Dec. It was a great success and he can definitely tell and feel a difference. The surgery went so well and he was up and out of the hospital in 3 days - it was absolutely amazing. Our surgeon was so pleased with the amount of muscle he was able to cut away - told her he cut enough to make a huge hamburger! Since Casey already had a pacemaker, we didn't have to be worried about the biggest threat to the surgery - cutting the node and having to be pacemaker dependent - fortunately, that didn't happen. Our surgeon was FABULOUS but in Atlanta, Ga. - unless you could get a real good flight arrangement, you probably will do fine with the one you have - just make sure he has done this surgery plenty of times - if not, I recommend spending the time and money and going with someone who has. Best of luck - our prayers will be with you this Dec. and now.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Septal myectomy and ICD]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 10-11-02 16:05
Dear Joy,
Please call the HCMA office at 973-983-7429 and make an appointment to talk to LIsa, the president, to find out if your surgeon is on the HCMA recommended list or not.
It is vital to have the surgery done by someone who has a lot lot lot of them under their belt. The HCMA can tell you who these people are and how to find them.
all the best,
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Septal myectomy and ICD]
Author: Linda (---.wmnsmd.adelphia.net)
Date: 10-11-02 17:16
An experienced surgeon is key to any procedure, we all agree on that. The HCMA office has an extensive resource list for all treatment options. That's not to say that all experienced HCM doctors, surgeons included , are known to the HCMA office. Without naming names on the message board, but thru an email or phone call to the office, Lisa can be made aware of those other doctors not known to us. Don't be afraid to ask your cardiologist/surgeon about the number of patients they have treated/operated on. As we extend our list of resources and are able to get these other doctors involved with the HCMA, we will ultimately be able to offer greater resources to our membership with the reassurance that they are seeing someone who is seeking the latest in treatment knowledge. Wouldn't it be great to have "experts" thru-the world? If they were on the HCMA mailing list, we would know they have the latest info available to them. But, the surgery is so specialized that it would be difficult for anyone not in an HCM Center to have done huge numbers of the procedure. Interview carefully and don't be afraid to ask for a second opinion. Please call the HCMA office and speak to Lisa, regardless of where you decide to go. Best wishes and prayers go with you.
Linda Price, HCMA Board Member
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Septal myectomy and ICD]
Author: Michelle Flanagan (---.as1.appl.wi.voyager.net)
Date: 10-12-02 11:12
Hello Joy,
My children both have had the myectomy surgery. What to expect, well of course its different for all children. My experiences were different both times. My daughter's surgery had some complications, but my son's was straight forward. His surgery took approx 4-5 hours. Then into the Intensive Care unit for 2 1/2 days. Then to the cardiac floor for 3 1/2 days. We left the hospital in 6 days. Went back for a follow-up with the surgeon a couple of days later, then went home. My daughter's first surgery took approx 8 hours because they ran into some unexpected mitral valve problems. She went into the ICU for 2 1/2 days as well, and only 2 1/2 days on the cardiac floor. She recovered nicely. I am a nursing student as well. I was not a nursing student at the time of the surgeries though so I was a little apprehensive. If you have more specific questions, please e-mail me and I'll try to answer.
Michelle - mom to Krista (11) and Tyler (8) both HCM
Krista surgeries: 3/97 septal myectomy, 2/99 mitral valve replacement
Tyler surgery: 1/98 septal myectomy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Septal myectomy and ICD]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 10-13-02 21:08
Joy - -
It is very important to go to a center with experience in HCM and with myectomy - If it were my child I would only go to one of two centers in the USA Mayo, Rochester and Cleveland Clinic OH.
I am happy to talk to you further on this, call the office.
Lisa Salberg
HCMA
Author: Joy Stoops (---.24.1.177.Dial1.LasVegas1.Level3.net)
Date: 10-11-02 13:52
Hi
I have a 9 year old son, who was diagnosed with HCM about 6 years ago. He is asymptomatic , but his pressure gradiants are between 60 - 90, with the septum measuring 21mm.
We are going to have surgery done in December and an ICD implant , hopefully at the same time. I don't want to do this twice. We meet with the surgeon on November 6.
We live in Henderson, NV. Just outside of Las Vegas, and have decided to stay and have the surgery performed close to home versus CA. ( Unless anyone can recommend and great surgeon ) The one we have chosen here does come very highly recommended.
I would like to know about your experiences with children having this procedure done and what to expect. I am a nursing student, so I do know all the medical stuff that goes along with this. Please write me back either here or at my personal e-mail address [email protected]. With any information that might help or knowledge that you have.
Thank you
Joy and Duncan Stoops
Steven age 9 HCM.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Septal myectomy and ICD]
Author: betsy trawick (168.8.208.---)
Date: 10-11-02 14:45
My 17 year old had the procedure done last Dec. It was a great success and he can definitely tell and feel a difference. The surgery went so well and he was up and out of the hospital in 3 days - it was absolutely amazing. Our surgeon was so pleased with the amount of muscle he was able to cut away - told her he cut enough to make a huge hamburger! Since Casey already had a pacemaker, we didn't have to be worried about the biggest threat to the surgery - cutting the node and having to be pacemaker dependent - fortunately, that didn't happen. Our surgeon was FABULOUS but in Atlanta, Ga. - unless you could get a real good flight arrangement, you probably will do fine with the one you have - just make sure he has done this surgery plenty of times - if not, I recommend spending the time and money and going with someone who has. Best of luck - our prayers will be with you this Dec. and now.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Septal myectomy and ICD]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 10-11-02 16:05
Dear Joy,
Please call the HCMA office at 973-983-7429 and make an appointment to talk to LIsa, the president, to find out if your surgeon is on the HCMA recommended list or not.
It is vital to have the surgery done by someone who has a lot lot lot of them under their belt. The HCMA can tell you who these people are and how to find them.
all the best,
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Septal myectomy and ICD]
Author: Linda (---.wmnsmd.adelphia.net)
Date: 10-11-02 17:16
An experienced surgeon is key to any procedure, we all agree on that. The HCMA office has an extensive resource list for all treatment options. That's not to say that all experienced HCM doctors, surgeons included , are known to the HCMA office. Without naming names on the message board, but thru an email or phone call to the office, Lisa can be made aware of those other doctors not known to us. Don't be afraid to ask your cardiologist/surgeon about the number of patients they have treated/operated on. As we extend our list of resources and are able to get these other doctors involved with the HCMA, we will ultimately be able to offer greater resources to our membership with the reassurance that they are seeing someone who is seeking the latest in treatment knowledge. Wouldn't it be great to have "experts" thru-the world? If they were on the HCMA mailing list, we would know they have the latest info available to them. But, the surgery is so specialized that it would be difficult for anyone not in an HCM Center to have done huge numbers of the procedure. Interview carefully and don't be afraid to ask for a second opinion. Please call the HCMA office and speak to Lisa, regardless of where you decide to go. Best wishes and prayers go with you.
Linda Price, HCMA Board Member
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Septal myectomy and ICD]
Author: Michelle Flanagan (---.as1.appl.wi.voyager.net)
Date: 10-12-02 11:12
Hello Joy,
My children both have had the myectomy surgery. What to expect, well of course its different for all children. My experiences were different both times. My daughter's surgery had some complications, but my son's was straight forward. His surgery took approx 4-5 hours. Then into the Intensive Care unit for 2 1/2 days. Then to the cardiac floor for 3 1/2 days. We left the hospital in 6 days. Went back for a follow-up with the surgeon a couple of days later, then went home. My daughter's first surgery took approx 8 hours because they ran into some unexpected mitral valve problems. She went into the ICU for 2 1/2 days as well, and only 2 1/2 days on the cardiac floor. She recovered nicely. I am a nursing student as well. I was not a nursing student at the time of the surgeries though so I was a little apprehensive. If you have more specific questions, please e-mail me and I'll try to answer.
Michelle - mom to Krista (11) and Tyler (8) both HCM
Krista surgeries: 3/97 septal myectomy, 2/99 mitral valve replacement
Tyler surgery: 1/98 septal myectomy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Septal myectomy and ICD]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 10-13-02 21:08
Joy - -
It is very important to go to a center with experience in HCM and with myectomy - If it were my child I would only go to one of two centers in the USA Mayo, Rochester and Cleveland Clinic OH.
I am happy to talk to you further on this, call the office.
Lisa Salberg
HCMA