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  • IHSS

    [IHSS]

    Author: Brian (---.mia.bellsouth.net)

    Date: 01-04-02 15:13

    I am a 41 year old white male diagnosed with IHSS in April 2001. Subsequently I had a Guidant AICD implanted in May 2001 and a ablation in June 2001 after several discharges from the ICD. I was very fit and active in athletics and now the quality of my life has been dramatically reduced. I am extremely fatigued, experiencing shortness of breath, dizziness and several blackouts. I had been taking 120 Mg of Verapamil daily with no significant improvement and subsequently this med was discharged and I was medication free for awhile with the same symptoms. I was then put on Atenolol, again with no improvements. I am now on 100 Mg of Toprol Ex with no significant improvement. The left ventricular outflow tract gradient was 40 mmHg back in March. It should also be noted that my brother passed away at age 31 (enlarged heart), my aunt in her early 40's of a heart attack and my father in his early 50's. It has now been suggested that I have one of two procedures: a myomectomy or an alcohol ablation.

    Can anyone advise where the leading physician(s) are or can offer any advice.

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

    [Re: IHSS]

    Author: beckley (---.muaa.akrn.chcgil24.dsl.att.net)

    Date: 01-07-02 18:12

    Hi,

    You say that you already had an ablation done. What did they do the first time? Did they not take enough? I would e-mail the HCMA directly and ask them to give you the names of any specialists in your area.

    There are several very strong drugs that you haven't tried yet: sotolol (BetaPace), disopyramide (Norpace) and dofetilide (Tikosyn). THere is also amiodarone (Cordarone). All of these are potent antiarrhythmia drugs that need to be started in the hospital but they are certainly worth a try over another surgery!!!

    I'm actually surprised that you are only on a beta-blocker (atenolol). They can only take you so far. I'm on nadolol (Corgard) and Tikosyn both and that keeps me in normal rhythym.

    Good luck,

    Sarah

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

    [Re: IHSS]

    Author: Shannon Santagate (---.galileo.com)

    Date: 01-08-02 13:03

    Hi.

    I don't know much about the Myectomy, but I can tell you a little about the Septal Ablation. My niece and my older brother each had one within the last 3 years. Their doctor is/was Dr. Spencer and he was (at the time) based in Houston, TX. Now he is mostly based out of South Carolina but still comes to Houston occassionally. My septal ablation is scheduled for April 22. I'm sure I'll be able to share much more info after that! The procedure is much less invasive than the Myectomy--the ablation is NOT open-heart surgery! Basically they inject alcohol into the heart "killing off" unneeded tissue and leaving your heart at a more normal capacity. My niece had wonderful results from the procedure. She was a lot like you -- out of breath all the time and passing out frequently. She has had no such symptoms since then and is SO happy! My brother had the procedure once and they didn't get rid of enough "bad" tissue so they had to do it again. After the second time he is also symptom free. This procedure (in my humble opinion) is an unbelievable gift from God! Our family lost my Grandfather, my Father and my Sister to this disease and we don't intend to lose anymore family members! I have the name, mailing info, and e-mail address of Dr. Spencer's nurse in Houston. She will send you a packet of information with all the details. Please feel free to e-mail me directly at [email protected].

    Good luck with everything!

    Shannon

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    [Re: IHSS]

    Author: Brian (---.mia.bellsouth.net)

    Date: 01-08-02 13:45

    Sarah:

    Thanks for the information. I had an ablation done this summer which seemed to alleviate the symptoms for a short time but the have now come back with a vengenance. I have sent two emails to HCMA and have received no answer? I have been on several meds and the current being Toprol and all with no positive results. The docs have prescribed none of the ones you have indicated although.

    Thanks.

    Brian

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

    [Re: IHSS]

    Author: Midge rollins (---.obmo.socket.net)

    Date: 01-08-02 19:46

    Brian, I am 55 and did have a myectomy at the age of 35. The surgery continues to be a success, I have developed further problems with the IHSS but the surgery is still considered successful. My surgery was done at Mayo Clinic and I continue to be followed there.

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

    [Re: IHSS]

    Author: Brian (---.mia.bellsouth.net)

    Date: 01-08-02 22:06

    Sarah:

    Thanks for the information. I first had the ICD implanted and then the ablation about 60 days later. My docs have not put me on any of the meds you mentioned although I have been on several others.

    I inquired 2x with HCMA concerning referrals and neither of my requests were answered?

    Brian

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

    [Re: IHSS]

    Author: Bob (---.dyn.optonline.net)

    Date: 01-09-02 20:32

    See the message posted by Ellen 1-09-02 for HCMA phone number and e-mail address.

    Also, Dr. Sherrid, at St. Lukes Roosevelt Hospital in NY has had good success using Disopyramide (Norpace) to reduce the gradient and improve symptoms. Their website (www.hcmny.org) includes detailed information.You may want to contact Dr. Sherrid about your situation.

    Good luck and keep in touch.

    Bob

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

    [Re: IHSS]

    Author: Ellen (---.parnj1.netplay.net)

    Date: 01-10-02 10:14

    Hi Brian...

    The fastest way to get a reply from HCMA is to call them directly. Due to the volume of emails received, it may take up to 3 weeks to get a reply via email. The office # is 973-983-7429.

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

    [Re: IHSS]

    Author: Jerilyn (---.tnt3.joliet.il.da.uu.net)

    Date: 01-11-02 18:10

    Hi,

    I read your response and would like more information on your myectomy. My doctor feels that it has a better success rate than an ablation procedure. He feels that I am a good candidate for the procedure, as am 48 years old.

    Was the surgery very painful and how long were you hospitalized? How long before you returned to work?

    I appreciate your taking the time to answer these questions and offer any additional advice you wish. Thanks again.

    Jerilyn

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

    [Re: IHSS]

    Author: Brian (---.mia.bellsouth.net)

    Date: 01-15-02 22:55

    Jerilyn:

    I haven't had the myomectomy yet. I am going to the Texas Heart Institute in Houston (St. Luke's Episcopal Hospital) at the end of this month. They have advised me that I'll be in the hospital for 2 weeks and a recovery period of 6 weeks.

    I'll keep you posted upon my return home.

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

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