If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

myomectomy

Collapse

About the Author

Collapse

HCMA FORUM ARCHIVE Find out more about HCMA FORUM ARCHIVE
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • myomectomy

    [myomectomy]

    Author: mary (---.webcache.tds.net)

    Date: 09-17-02 16:25

    We just returned from Mayo Clinic with our 15 year old son who was diagnosed with HCM one year ago.

    One year ago , his mm of thickness was 20 and his gradient was 15. Were we shocked to learn that his gradient had increased in one year to 80! Needless to say, they reset his pacemaker to pace the lower chambers and he took his meds before the next echo. They got the pressure gradient to 50. They told us that it may take a few days to see more improvement. We will have reassessment in one month.

    As far as symptomss, he is extremely easy to fatigue, gets short of breath and chest discomfort during any exercise more than walking. (Did not tell us until right before our appointment.)

    We were totally shocked that the MD mentioned the possible need for a myomectomy. I thought this was something reserved for when the disease limits everyday activities.

    Please give some advice and guidance. If he has this now, what about the future??? No-one else we know in our immediate family has hcm.

    Thanks. Mary

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: myomectomy]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 09-17-02 16:42

    Dear Mary,

    I'm very glad you son is going to the Mayo --he is getting excellent care. If they recommend a myectomy, then it is something your son should consider. It does sound like his every day activities are already limited, actually, if he can't do more than walk without his heart complaining about it.

    The myectomy should reduce his gradient and make him feel much better and allow his heart to function as close to normal as possible.

    There are a LOT of myectomy patients here --take a look at the CMC threads (Cleveland Myectomy Crew) for example.

    Most HCM patients live a full life span and a myectomy can help make that happen. The Mayo Clinic is one of the few places that knows HCM and knows what they are talking about.

    hang in there,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: myomectomy]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 09-18-02 11:08

    Mary,

    It is likely that your son will someday need a myectomy...do not panic...when done in the proper centers the risks are very low and the success rate is very high. Pacing will only reduce the gradient not get rid of it altogether. Also it will not remove all symptoms, it may reduce some, but not remove them. If he wants to talk to others who have had the procedure (young men his age) let us know and we can help arrange that.

    It is important that he start talking more about his symptoms. He may not want to worry you or may be afraid you may limit his activities if he talks about his symptoms. Let him know it is OK to discuss these matters, and in fact it will help him feel better.

    Best wishes,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: myomectomy]

    Author: Kris (---.dialup.netins.net)

    Date: 09-18-02 16:54

    Mary,

    I am 5 weeks post myectomy surgery. My procedure was done at St.Mary's in Rochester. I felt results as soon as I got home. I no longer have presyncopy or syncopy. I have felt no angina or other chest discompfort. I could barely walk 50 yrds. without feeling fatigue or presyncopal episodes, now I walk 1 hour plus and have felt nothing.

    I guess what I am trying to point out is a myectomy, especially at the suggestion of a mayo physician is from my limited research going to help 90% of the recipiants. I may be wrong on my figure but it is a very percentile.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: myomectomy]

    Author: Kris (---.dialup.netins.net)

    Date: 09-18-02 17:12

    Mary,

    Sorry about my last post, I hit the wrong key.

    I was trying to put it was a very high percentile.

    My thickness was 20+ mm and my gradient was as high as 117 when measured at the Iowa Heart Center in Des Moines, Iowa. I went through 2 yrs. or better of medication changes and pacer settings before I decided to go to Mayo. Unfortunatly, I learned more in 3 days at the Mayo Clinic then I had in the previous 2 yrs. In fact before arriving at Mayo I was never heard the term or was given the diagnosis of Hypertrophiccardiomyopethy, HCM and was never told about suddendeath.

    Do to the fact that your son is 15 it would be greatly advantages to have the myectomy done as soon as possible. His healing would be quicker and his recovery time probably sugnificantly reduced. Statistics for the 12-20 age goup are even better as far as results and recovery.

    I wish you and your family and your son the best, but don't give up.

    Kris D Simmons

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: myomectomy]

    Author: mary (---.webcache.tds.net)

    Date: 09-19-02 09:54

    At what pressure gradient is it recommended to have the myomectomy. If not done, what are the consequences? How long does the results last?

    For the surgery itself, is there alot of pain involved? I know the big push in healthcare is pain management. I am just scared for my son. What recovery time is expected? He would want to get back to school as soon as possible.

    I have great faith and trust in the physicians at Mayo. Our doc (Tajik) said that medication changes are usually just a temporary solution. He said that the pacing may reduce the pressure. My son seems to be feeling much better since they did that. He is doing much more walking and is not so fatigued so I am hoping for the best.

    THanks for all the support. Mary

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: myomectomy]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 09-19-02 10:08

    Dear Mary,

    There are a ton of threads here on myectomy...I recommend reading through them. Sadly, many threads that start with something totally different as the title end up with myectomy conversations in them, but you can do a word search within a thread to check instead of reading the whole thing.

    I don't know the "math" of a myectomy (the gradient needed), however, the mitral valve is being prevented from working properly so the consequences of leaving it "broken" are that the heart isn't getting as much oxygen to the system as it should and it is working harder which can lead to heart damage over time.

    Recovery time is a few weeks, I believe. However, a healthy youngster with energy is going to bounce back pretty quickly. Your Mayo doctor can give you much better specifics about post-surgery expectations and pain management than almost anyone.

    hang in there,

    S
    NOTE: This is a post from the previous forum message board.

Today's Birthdays

Collapse

Working...
X