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16 year old,what to expect? what to do?

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  • Sarah
    replied
    Re: 16 year old,what to expect? what to do?

    dear steven,

    the guidelines for an ICD are that you should have at least two or more of the following 5 risk factors: ventricular tachycardia, an incorrect blood pressure response to exercise, fainting, a septal measurement of 3 or more centimeters, and/or a family history of sudden death (some doctors feel that this is two or more deaths, not just one).

    you don't mention what basis they gave you for needing an ICD, so I was wondering what they are basing this decision on.

    you can use the search function to find all the icd posts here--there are a lot. you can also visit zaplife.org --a site devoted to ICDs.

    good luck and take care,

    s

    Leave a comment:


  • Burton Borrok
    replied
    Re: 16 year old,what to expect? what to do?

    She is truly the patron saint of HCM!
    See Lisa, I'm not the only one who can make up appropriate names for you.
    Burt

    Leave a comment:


  • pmurphy
    replied
    Re: 16 year old,what to expect? what to do?

    Steven,

    I have to back up Burt's excellent post just previous to this. When dealing with HCM or HOCM it is vital to get a second opinion. Especially when you start getting recommendations of surgery and/or ICDs. Our daughter was diagnosed almost 3 years ago and during that time her local doctor, who we respect and still see, suggested both a pacemaker and later alcohol ablation for her (again, she's now 14). She was also recommended for an ICD. Based on what we'd learned through this wonderful organization, the HCMA, and by going to HCM conferences, we knew we needed to get another opinion...by someone who saw alot of HCM (we chose Boston). A septal myectomy became the best option, truly her only REAL option. We were able to make that decision and feel confident that it was the right one.

    Please talk to Lisa Salberg about this. She's been there and can help you with any questions you might have. She is truly the patron saint of HCM! If you do seek a second opinion and it involves the costs of travel, make sure your parents know that if they participate in a Flexible Spending Account (or cafeteria plan) at work, they should be able to deduct most of the travel costs from that. You're still paying for it, but with tax free dollars which amounts to a significant savings.

    all best,

    paul

    Leave a comment:


  • Burton Borrok
    replied
    Re: 16 year old,what to expect? what to do?

    Hi Steven,
    I have no first hand knowledge of defibrillators. Maybe some of the folks who have them would like to take a shot at explaining the devise, the installation, and what it’s like to live with one. Steve, you can also do a search on the board to find all the postings about it. (The search function is up in the page headings.)

    We are all pretty touchy about cardiologists. Most of them are specialists in the cardiovascular system, and only a few are up to the mark and current in the care and feeding of HCM. I think your doctor at UCLA is of the former variety. Maybe I shouldn’t say anything, but quite frankly any doctor who would recommend surgery after only a cursory look at the echo is way too sure of himself for my tastes. I don’t care what he’s head of, or who he talks to. (Can you really picture the head of pediatric cardiology asking other cardiologists for advice? Not bloody likely.)

    What he advises (now that he’s backed away from surgery) might be right on the money, but I sure would seek a second opinion from a cardiologist who is also a specialist in HCM before I went any further. If Lisa doesn’t know anyone closer, a couple of hour trip down to Huntington Beach would seem in order.

    To speak bluntly, you’re young, with a good brain, and your whole life ahead of you. This is not the time to make any medical mistakes. Please talk to your folks about this, and have them call Lisa. How bad can a second opinion be?
    Burt

    Leave a comment:


  • Linda
    replied
    Re: 16 year old,what to expect? what to do?

    Paul, I'm so glad to hear your update, esp that things are looking so good. I hope to see you all in NJ - Linda

    Leave a comment:


  • pmurphy
    replied
    Re: 16 year old,what to expect? what to do?

    Hi Steven,

    my 14 year old daughter had a septal myectomy in Boston in late February and her results and recovery has been great. I would be happy to discuss any of this with you if you like...just PM me. Like you, she also had a cardiac MRI last Fall (those are pretty new procedures I understand).

    best wishes and hang in there!

    Paul

    Leave a comment:


  • ise2425
    replied
    Re: 16 year old,what to expect? what to do?

    Good News,
    the surgery is off for now, as my medicine is increasing and Im getting a defibrilator installed in a couple weeks. Any know about defibrilators, what they do? What is the procedure?
    Steven

    Leave a comment:


  • ise2425
    replied
    Re: 16 year old,what to expect? what to do?

    Burt- I am being seen by the head cardiologist of the pediatric divison at the hospital so its not like your wifes' situation with the interns. In fact, I haven't even seen any interns in his office. He isn't an expert about HCM per say, although he has conferences every monday with the whole cardiology staff and they talk about patients they have issues about to the specialized staff.
    PS- I had an MRI today, and they looked at my heart in the 3-D manner to see if the septum has grown. Im anxious for the results and hope for the best

    Thanks everyone for the support,
    Steven

    Leave a comment:


  • sueb
    replied
    Re: 16 year old,what to expect? what to do?

    And be sure to ask for, or have your parents ask for, copies of all test reports rather than just taking the physician's word for the results. That way you can share information with Lisa about appropriate referrals. Also you can begin your own medical file so you can track changes and begin to learn to take responsibility for your own health care. Sometimes with this condition, with all the information now on the web (thanks Lisa for this important piece), we know more than the doctors do. You will find they are usually more interested in cardiovascular issues than cardiomyopathy.

    My very best wishes to you,

    Sue

    Leave a comment:


  • Burton Borrok
    replied
    Re: 16 year old,what to expect? what to do?

    Hi again Steve,
    You say you’re being seen at UCLA. My wife was seen there for a few years for a neurological problem. While there, she was seen by an intern. A number of interns were seeing patients, and then they would all meet with their professor, discuss each patient’s case and determine what to do next.

    It was an excellent teaching method, but the floor in the system was that it depended on the intern’s ability to observe and accurately report to the professor all the ramifications of the patient’s condition. When my wife’s intern finished his residency she was assigned another, and this resident unfortunately did not measure up. Consequently we rattled around for awhile with private practice doctors until we found another half decent neurologist.

    From your description of what is going on, I wonder if you too are being seen by an HCM specialist or by an intern. – For example, what HCM specialist would say your septum was greatly enlarged and you needed surgery in the very near future, - then turn around and say, “Well maybe it isn’t so much enlarged after all. Let’s run another test and see if you need surgery at all, or possibly just a change in your medication.”

    Steve, I’m sorry, but I have dealt with a lot of doctors for a lot of years, and that scenario makes me very skittish. I would strongly suggest that if you’re being seen by an intern, or a doctor not fully conversant with HCM to go out and get yourself an HCM specialist.

    By all means get the MRI (noisy as all get out, but totally painless) and another stress echo, if that’s what they advise. This will provide useful information about your condition whether you decide to stay or to go.
    Burt

    Leave a comment:


  • Reenie
    replied
    Re: 16 year old,what to expect? what to do?

    Actually, there is a specialist in Huntington Beach (I think) who sees patients. There are other major centers too, but they are east of the mighty Mississippi. I would suggest you call Lisa Salberg, like others have mentioned. She will call you back if you happen to not catch her at the office. She's usually in the office on Tuesdays and Thursdays. The phone # is at the bottom of every page.

    Reenie

    Leave a comment:


  • ise2425
    replied
    Re: 16 year old,what to expect? what to do?

    I live in Los Angeles, and go to UCLA medical center for all my appointments.I've only head of the Mayo clinic in Minn., are there other big ones also?

    Leave a comment:


  • Reenie
    replied
    Re: 16 year old,what to expect? what to do?

    Hi Steven. Do you mind telling us where you are, meaning where you go for treatment? I'm just thinking about where some of the best HCM centers are. Good luck! Here's hoping for a great summer!!!

    Reenie

    Leave a comment:


  • ise2425
    replied
    Re: 16 year old,what to expect? what to do?

    Hey everyone, thanks for the advice, it really does mean a lot to me to see people taking time to answer these messages. Thanks also for the compliments on my grammar... laugh out loud. Anyway, seems like my surgery might not be as pressing as originally thought. It seems as though, the doctor read the echo in a cursory manner and he might have jumped to conclusions. After looking carefully at different angles he actually thinks that the septum had not grown to much, so maybe increased dosage will help, and my summer can still be salvaged. Anyway, i'll post when I know if the surgery will be needed for sure, i'm due for an MRI next week, and then if the misdiagnosis was true, a new dose of medicine will be given to me and a follow up stress-echo.Hope all turns out well, thanks for the support!

    Steven

    Leave a comment:


  • Linda
    replied
    Re: 16 year old,what to expect? what to do?

    Steven, Welcome to the message board. Best wishes as you and your family work your way through this whole thing. I'm sure you will find much encouragement from our group. I hope you and your family are able to talk with Lisa soon. You'll be pleased with all the info she can give you. Linda

    Leave a comment:

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