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.

Should I get a second option?

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

  • Should I get a second option?

    [Should I get a second option?]

    Author: Brie Rodighiero (---.dialup.sndg02.pacbell.net)

    Date: 04-09-02 19:00

    Hi there. As I read more facts about HCM and learn more from everyones messages I wonder if I should get a second option.

    I'm twenty three and was diagnosed about 10 months ago with HCM at 22-27mm. Since then I've had a few different tests and have tried beta-blockers and now I'm on verapamil. The beta-blockers didn't help my symptoms at all, which include dizziness, lightheadiness, chest pain, racing heart beat and shortness of breath. Now I'm taking 120mgs of verapamil a day and I do feel a little improvement but I'm also very tried,weak and still very dizzy.

    My doctor told me to stop taking verapamil if I felt it wasn't helping and to just wait 6 months until I see him again. But what I don't understand is why he is telling me to be very aware of my symptoms amd that this is a serious problem, but it's OK for me to stop taking the verapamil if I want to. Is that normal for a doctor to leave that kind of decision up to the patient?

    He also never told me I had to stop working out, but it's seems like many people who are diagnosed w/ HCM are told to slow down or stop phyical activity.

    Another thing that worries me is the risk of sudden dealth. The more I read the more I wonder if I'm at high risk. I'd never asked my doctor because I didn't know it was something of concern. And everytime I see him, our appointments are fairly quick and I leave wondering "What did he mean by that?"

    In any case, I'm just confused and wondering if I should see another doctor. Any replies would be VERY helpful!

    Thanks,

    Brie

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

    [Re: Should I get a second option?]

    Author: Blaine (---.chartersc.net)

    Date: 04-09-02 23:47

    Short answer: Get another opinion. Quickly.

    Long answer requires more info, like what tests have been performed?

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

    [Re: Should I get a second option?]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-10-02 02:07

    Dear Brie,

    Please call the HCMA office (973-983-7429) to find out if there are any HCM specialists in your area (and to get on the mailing list).

    You definitely need to see someone else who explains everything, understands HCM, and knows how to evaluate you for any sudden death risk. According to Dr. Maron's review of the HCM research, only 10 to 20% of HCM patients are at risk for suddend death. The risk factors are a family history of sudden cardiac death, a personal history of ventricular tachycardia, lower blood pressure when you exercise, if you've had a heart attack before, or if your wall thickness is over 30mm.You need to have multiple risk factors to be considered for an ICD.

    It is VERY important to understand that everyone has a different experience with HCM. Even within families, the course of the disease can be very different.

    Also, there are other medications that you can try, but you have to start them in the hospital. Norpace and Betapace, for example.

    As for exercise, that is also up to you and your doctor and your risk factors.

    I hope this helps. HCM is so individual that there just aren't blanket answers, which is why having the right doctor is critical.

    Let us know how it goes,

    Sarah

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

    [Re: Should I get a second option?]

    Author: lisa (208.47.172.---)

    Date: 04-10-02 14:39

    Hello,

    I have stated to many many HCM patients over the years how important it is to recieve an evaluation from a doctor with extensive experience with HCM. With ALL due respect to cardiologist in the "local" community, they just do not see enough cases of HCM to be "well versed" in the various presentations of the condition. Taking the time to travel to those with experience in HCM and then returning home and working with your local doctor AND your specialist, YOU can maximize your treatment.

    As a rule I always suggest a second opinion and the rule is twice as tough when you are thinking about participating in a research protocol.

    Stop, think, ask, listen THEN and only then can you make well informed choices regarding your healthcare.

    Hope this information helps, for more information feel free to call the office, 973-983-7429.

    Best wishes to all,

    Lisa Salberg

    President

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

    [Re: Should I get a second option?]

    Author: Lisa (---.tnt1.streator.il.da.uu.net)

    Date: 04-14-02 14:26

    Brie~~Yes I would get a second opinion. From what you wrote it sounds like the doctor doesn't really care to much what happens. You would be better off with a another doctor. I hope everything works out for you. Good luck and God bless.

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

    [Re: Should I get a second option?]

    Author: Brie Rodighiero (---.dialup.sndg02.pacbell.net)

    Date: 04-15-02 18:17

    I just want to thank everyone who suggested I DO get a second option. I called Lisa and got a number to a doctor in my area who seems to have more knowledge of HCM.

    Funny thing, is that he's in the same office as the doctor am already seeing!!!! I have the referral process started and am looking forward to seeing a different doctor!

    Thank you to everyone! And thank you, Lisa for taking the time to speak to me last week over the phone. Just talking to you made me feel better about everything and just so you know, I have started my research of my family history. I'll let you know if I find anything interesting!

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

Today's Birthdays

Collapse

Working...
X