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.

Alcohol Septal Ablation around the corner!

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

  • Alcohol Septal Ablation around the corner!

    [Alcohol Septal Ablation around the corner!]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 11-08-02 14:12

    We head out in three days! Where does the time go? On Monday morning I will be driving my mother and father to the MUSC, in SC! Please say a prayer that all goes smooth for my father, that our travels are safe, and that I find comfort, balance, peace and inner strength to provide my parents with all the love and support they will need! I will keep you all posted on what takes place!

    ~ Erica

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Lisa Salberg (208.47.172.---)

    Date: 11-08-02 14:16

    Erica - You will do great... you are armed with information....friends...and support.

    All the best!

    Lisa

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Linda (---.wmnsmd.adelphia.net)

    Date: 11-08-02 15:25

    Best wishes to Erica, Mom and Dad. We'll all be anxiously waiting for progress reports. Linda, Bd of Directors

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Amy Williams (---.proxy.aol.com)

    Date: 11-08-02 18:17

    Erica,

    I will be thinking about you and your family...and I will say a prayer for your father. I hope everything goes well.

    Amy

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 11-08-02 19:22

    Erica,

    I also send you, your Mom, and especially your Dad my prayers and good wishes. And tell your Dad I hope we hear from him directly when he's through this procedure!

    Pat

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

    [Re: Alcohol Septal Ablation around the corner!]

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

    Date: 11-08-02 19:22

    Dear Erica,

    You know I hope everything goes well. Just remember to take a deep breath every once in a while.

    Hang in there,

    Sarah

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Erica Stolzenberg (---.ipt.aol.com)

    Date: 11-12-02 23:18

    Dad had his ablation today and it was a HUGE success! Dr. Spencer is AMAZING and so is his nurse, Donna Killip! All I have to say is thank you to the MUSC doctors/nurses/medical staff, and to our Lord above! Yeah, yeah ... I know an ablation isn't a cure and that Dad will still be haunted by HCM forever ... but what a relief! Stay tuned ... Dad will post for himself when we return home!

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Dolly W (---.proxy.aol.com)

    Date: 11-13-02 00:07

    To Erica and Erica's Dad,

    That's fantastic news! My best wishes for a speedy recovery and continued health! I'm so glad the ablation was a success. Keep us posted.

    Again, God Bless.

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 11-13-02 11:15

    Dear Erica,

    Great news. I'm very glad everything went well.

    Keep us posted,

    Sarah

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Erica (---.emr.musc.edu)

    Date: 11-13-02 12:38

    Things are NOT going smooth today. Now dad is at risk for sudden death? Agghhh! Yesterday he wasn't at risk and today, one day after his ablation, he is? Now he needs an ICD/pacemaker. Dad is out of one doctor's hands and in a new doctor's hands. We don't know what's going on ... STRESS ... will update you later. PLEASE pray!!!! We are now at the mercy at new doctors. Lisa ... we might be calling you for HELP!

    PS ... His gradient was 120 now it's 12 ...

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Mary SHarp (---.net299.fl.sprint-hsd.net)

    Date: 11-13-02 13:26

    Don't worry about the ICD it is not that bad! I just went through it and two weeks later I feel almost normal. Also an EP doc did not talk with you before hand about this. When I went to Boston I had two-three doctors explaining every aspect of this condition before we did anything. They wanted to make sure that I new every possible outcome before I committed to anything. I am thinking about you and your family.

    Mary S.

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Lisa Salberg (208.47.172.---)

    Date: 11-13-02 14:47

    Erica -

    I will be leaving for AHA on Friday...but should be available today and Thursday... I can not say I am surpised that he is having a device implanted. I hope he is doing well with all the ups and downs. Please send him our warmest regards.

    Best wishes,

    Lisa

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 11-13-02 15:42

    Dear Erica,

    Just take a deep breath and stay calm. An ICD is not the end of the world ---in fact it can very well give you a new one. Just be grateful that he is getting the care he needs. Better to have an ICD if you need it than otherwise.

    Sarah

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Dolly W (---.proxy.aol.com)

    Date: 11-13-02 15:58

    Erica,

    I know your Dad is in the best of hands. I'm sure that they have been monitoring his progress and that's how they know he needs the ICD. Know that we are keeping you and your family in our thoughts and prayers, and that all will be well.

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Erica Stolzenberg (---.ipt.aol.com)

    Date: 11-13-02 19:10

    Thanks! We are not worried about the ICD ... in fact we are glad that he is getting one. Had he not gone into V-tach last night we would have left tomorrow (thursday) without the device! At any rate, I do not want to go into detail on the board at this time.

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Erica Stolzenberg (---.ipt.aol.com)

    Date: 11-14-02 05:57

    Lisa ... all is well. Please call us at 843-876-3912 as Dad is requesting to speak with you personally about ICD's/pacers. He definitly needs one, (which we are relieved to learn), but Dad was told by his local cardiologist that:

    -Electrophysiology studies, EPS in HOCM patients have been inaccurate leading to 50% failure rates in ICD's when they should have operated leading to sudden death. Is this so?

    Is this true? Dad trusts you and your knowledge so if you could call him back he would greatly appreciate it! PLEASE call! : )

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 11-14-02 06:31

    Dear Erica,

    I forwarded your post to Lisa's e-mail (work and home).

    For everyone else reading this board, this statistic is not accurate at all. First, there are two things at issue in it. It _is_ true that EPSs have been found to be poor predictors of needing an ICD or not in HCM patients. However, if you have an ICD, the chances that it will _prevent_ sudden death should you have an event are about 98%.

    I would like to know the source the local doctor is quoting. Old and inaccurate stuff is everywhere.

    S

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Erica Stolzenberg (---.ipt.aol.com)

    Date: 11-14-02 06:55

    Sarah ... we called Dad's cardiologist back at home this morning to have him reconfirm this nonsense and he refused to take Dad's call! Can you believe it? They said it wasn't proper protocol to have his doctor call him back!

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Erica Stolzenberg (---.ipt.aol.com)

    Date: 11-14-02 06:56

    PS- hence ... we'll be finding Dad a new cardiologist back home!

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 11-14-02 09:34

    Dear Erica,

    Um, YEAH! I won't say what that "doctor" is. I know you will talk to Lisa about finding a local person who is at least a compenent doctor, if not an HCM specialist.

    S

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Erica (---.ipt.aol.com)

    Date: 11-14-02 09:42

    I hear ya! This week has been such a nightmare. I have lost so much faith in our medical world. On a better note, Lisa called us! Mom and Dad finally spoke with her, too! We'll look into finding a more competent doctor or HCM specialist when we get home!

    BTW- how are things with your new home and job? : )

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

    [Re: Alcohol Septal Ablation around the corner!]

    Author: Erica (---.ipt.aol.com)

    Date: 11-14-02 10:59

    Little update ... Dad's cardiologist from home finally returned Dad's phone call. He clarified with my father that he said a pacemaker would not work 50% of the time in HOCM pts. He said dad misunderstood him! Quite possible! All I know is that I praying things go well so I can go home!
    NOTE: This is a post from the previous forum message board.

Today's Birthdays

Collapse

Working...
X