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[Apical Hypertrophy & Myectomy]
Author: Marlene (---.ip.theriver.com)
Date: 08-18-02 10:30
Validation at last! My trip to the Mayo Clinic finally gave me answers as to why my symptoms were so bad. Apparently when my docs were doing echos they were not including the apex (bottom) of my heart. I have Apical Hypertrophy. Would sure like to talk with others who have this type and also if anyone out there has had Apical Myectomy.
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[Re: Apical Hypertrophy & Myectomy]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-18-02 11:48
HI Marlene!
Well at least we have some answers here! Apical HCM is not able to be treated by myectomy not ablation at this time. The thickness of the heart has been focused at the bottom of the heart. treatments at this time are basicly drugs to help the heart relax as best as possible. - Did they change your drugs at all??
The type of HCM you have had been refered to as the Japanise type as it had mostly been documented in Japan. It is now seen all over the world. - So there is youe history lesson.
Other Apicals...please chime in for Marlene...
Best wishes,
Lisa
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[Re: Apical Hypertrophy & Myectomy]
Author: Marlene (---.ip.theriver.com)
Date: 08-18-02 11:52
Lisa, I really need to talk to you about this. Yes, Apical Myectomy IS being done. Only approx. 15 to date & I know who is doing them.
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[Re: Apical Hypertrophy & Myectomy]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-18-02 12:06
Well... this is very new/rare I knew of 2 but thought it was strictly experimental. Is Danielson Doing it?
Lisa
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[Re: Apical Hypertrophy & Myectomy]
Author: Marlene (---.ip.theriver.com)
Date: 08-18-02 12:11
Lisa, It IS experimental and I'm not sure I should say any more here. No, it is not Danielson. Please call me back. I have left a message for you. Thanks.
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[Re: Apical Hypertrophy & Myectomy]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-18-02 12:13
Marlene...call me I am in the office..I do not have your # with me a the moment...
Lisa
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[Re: Apical Hypertrophy & Myectomy]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-18-02 14:51
Marlene...hang in there and do your homework. You may wish to share some of your thoughts here on the board...someone may have some ideas.
It was nice speaking to you.
Lisa
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[Re: Apical Hypertrophy & Myectomy]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 08-18-02 21:41
Dear Marlene/Lisa
Is it normal to not include the apex in the echo? Sounds kinda silly if it is.
S
PS Marlene --very glad you go to the "bottom" of your problem (sorry)
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[Re: Apical Hypertrophy & Myectomy]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-19-02 14:06
Sarah -
Yes they should have seen that -- -this is why I worry about echo techs sometimes.
Lisa
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[Re: Apical Hypertrophy & Myectomy]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-20-02 07:30
Marlene -
I did a little more digging on the apical myectomy -
Here is what I understand:
*It has been done for a few years yet only a very small number of procedures have been done.
*There have been no published reports as to the outcome.
*We have no way in telling if the procedure will provide any improvement at all.
*Only one person is doing the procedure.
* There is a great deal of uncertianty in the HCM medical comminuty that this is useful at all.
For those reading this please understand this is not about a general myectomy..this is only about an Apical myectomy (for those with no obstruction and only apical thickness - the bottom of the heart)
Marlene I know this is not what you want to hear, I am still looking around for more information.
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Marlene (---.ip.theriver.com)
Date: 08-20-02 10:38
Lisa:
Thank you for all your help thus far & in advance for any more info you are able to find on this! And, no, the dr. did not change any of my meds. I was disappointed in this, because I think it would be good to experiment in this area. Typically, I do not tolerate meds well, but am willing to try again. I don't know how to followup on meds - I have only been seeing an electrophysiologist here and don't know about his expertise in this area. Maybe when I hear from you re: Card.s in Phoenix area... I also like the T-shirt idea - only could we have collars on them? (I don't do the typical tees very well).
Sarah:
Wanted you to know I really appreciated your humor: "Finally getting to the BOTTOM (the Apex) of this". HAHA! Good to have a sense of humor thru all this!
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[Re: Apical Hypertrophy & Myectomy]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 08-20-02 11:14
Dear Marlene
Bad puns are my specialty! Good luck with everything.
Sarah
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[Re: Apical Hypertrophy & Myectomy]
Author: Marlene (---.ip.theriver.com)
Date: 08-20-02 12:40
Lisa & Sarah:
As far as the echos go: The tape I took to Mayo was a dobutamine echo done in 10/01 & a post-pacemaker/ICD done in 1/02. THESE failed to show the Apex, but I don't really know about any others I've done. This was the first time any dr. ever said anything about my Apex. Although, Dr. Nishimura did say that the pacemaker could have changed where the hypertrophy was in the septum. Does this sound right? I know earlier in one report my dr. here in AZ had called my condition "Obstructive" which isn't the case now. Is it that he just didn't know what he was talking about or could things change like this?
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[Re: Apical Hypertrophy & Myectomy]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 08-22-02 13:43
Dear Marlene
Oh, THIS post. Sorry. Well. Hm. This one is way over my head. However, Dr. Nishimura is one of the top experts in the whole world on HCM, so I'm going to say "whatever he says" and second the opinion that the local doctor was not on the ball.
Take care
Sarah
Author: Marlene (---.ip.theriver.com)
Date: 08-18-02 10:30
Validation at last! My trip to the Mayo Clinic finally gave me answers as to why my symptoms were so bad. Apparently when my docs were doing echos they were not including the apex (bottom) of my heart. I have Apical Hypertrophy. Would sure like to talk with others who have this type and also if anyone out there has had Apical Myectomy.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-18-02 11:48
HI Marlene!
Well at least we have some answers here! Apical HCM is not able to be treated by myectomy not ablation at this time. The thickness of the heart has been focused at the bottom of the heart. treatments at this time are basicly drugs to help the heart relax as best as possible. - Did they change your drugs at all??
The type of HCM you have had been refered to as the Japanise type as it had mostly been documented in Japan. It is now seen all over the world. - So there is youe history lesson.
Other Apicals...please chime in for Marlene...
Best wishes,
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Marlene (---.ip.theriver.com)
Date: 08-18-02 11:52
Lisa, I really need to talk to you about this. Yes, Apical Myectomy IS being done. Only approx. 15 to date & I know who is doing them.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-18-02 12:06
Well... this is very new/rare I knew of 2 but thought it was strictly experimental. Is Danielson Doing it?
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Marlene (---.ip.theriver.com)
Date: 08-18-02 12:11
Lisa, It IS experimental and I'm not sure I should say any more here. No, it is not Danielson. Please call me back. I have left a message for you. Thanks.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-18-02 12:13
Marlene...call me I am in the office..I do not have your # with me a the moment...
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-18-02 14:51
Marlene...hang in there and do your homework. You may wish to share some of your thoughts here on the board...someone may have some ideas.
It was nice speaking to you.
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 08-18-02 21:41
Dear Marlene/Lisa
Is it normal to not include the apex in the echo? Sounds kinda silly if it is.
S
PS Marlene --very glad you go to the "bottom" of your problem (sorry)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-19-02 14:06
Sarah -
Yes they should have seen that -- -this is why I worry about echo techs sometimes.
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-20-02 07:30
Marlene -
I did a little more digging on the apical myectomy -
Here is what I understand:
*It has been done for a few years yet only a very small number of procedures have been done.
*There have been no published reports as to the outcome.
*We have no way in telling if the procedure will provide any improvement at all.
*Only one person is doing the procedure.
* There is a great deal of uncertianty in the HCM medical comminuty that this is useful at all.
For those reading this please understand this is not about a general myectomy..this is only about an Apical myectomy (for those with no obstruction and only apical thickness - the bottom of the heart)
Marlene I know this is not what you want to hear, I am still looking around for more information.
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Marlene (---.ip.theriver.com)
Date: 08-20-02 10:38
Lisa:
Thank you for all your help thus far & in advance for any more info you are able to find on this! And, no, the dr. did not change any of my meds. I was disappointed in this, because I think it would be good to experiment in this area. Typically, I do not tolerate meds well, but am willing to try again. I don't know how to followup on meds - I have only been seeing an electrophysiologist here and don't know about his expertise in this area. Maybe when I hear from you re: Card.s in Phoenix area... I also like the T-shirt idea - only could we have collars on them? (I don't do the typical tees very well).
Sarah:
Wanted you to know I really appreciated your humor: "Finally getting to the BOTTOM (the Apex) of this". HAHA! Good to have a sense of humor thru all this!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 08-20-02 11:14
Dear Marlene
Bad puns are my specialty! Good luck with everything.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Marlene (---.ip.theriver.com)
Date: 08-20-02 12:40
Lisa & Sarah:
As far as the echos go: The tape I took to Mayo was a dobutamine echo done in 10/01 & a post-pacemaker/ICD done in 1/02. THESE failed to show the Apex, but I don't really know about any others I've done. This was the first time any dr. ever said anything about my Apex. Although, Dr. Nishimura did say that the pacemaker could have changed where the hypertrophy was in the septum. Does this sound right? I know earlier in one report my dr. here in AZ had called my condition "Obstructive" which isn't the case now. Is it that he just didn't know what he was talking about or could things change like this?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Apical Hypertrophy & Myectomy]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 08-22-02 13:43
Dear Marlene
Oh, THIS post. Sorry. Well. Hm. This one is way over my head. However, Dr. Nishimura is one of the top experts in the whole world on HCM, so I'm going to say "whatever he says" and second the opinion that the local doctor was not on the ball.
Take care
Sarah