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Newly Diagnosed, To ICD or not to ICD


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  • Newly Diagnosed, To ICD or not to ICD

    [Newly Diagnosed, To ICD or not to ICD]

    Author: Dave (---.client.attbi.com)

    Date: 07-28-02 08:55

    Hi all:

    Another person here with HCM. I am a 34-year-old father of three young kids that lives in the Chicago area. I guess I need to throw out history before I can ask questions, so here it goes...

    I was born w/ a heart murmur that stayed undiagnosed until about three years ago. I was coaching my kid’s soccer team. At the end I tried playing against the team. I got dizzy and knew something wasn't right. Ended up getting diagnosed at a local hospital that sent me to Loyola University. There I met Dr. Lichtenberg who was very knowledgeable on HCM. We decided to go the beta-blocker route (Toprol XL) and that worked fairly well for the following three years. Last month I had full syncope episode at a family picnic. Was playing softball and ran to first, then second, and that was the last thing I remembered. Was out for about 15 seconds or so. Went to Loyola where they admitted me. Was there for three days and had various opinions on what to do. Everything from the Alcohol procedure to staying status quo. Dr. Lichtenberg recommended I go see Dr. Maron up in Minnesota. They confirmed one of the recommendations, which was to get an ICD. So with all of that said, here are a couple of my questions.

    1) Has anybody been following this technology closely? In other words who are the manufacturers and what is available w/ each. I am sure doctors have preferences for whatever reason and I really want to make an informed choice. For example, I have heard that new models of these are supposed to be able to download information over the phone so you don't have to go in for a checkup every three months. Track records would be great as well. To me this is kind of like researching a car that you won't be able to sell for at least 5 years or so.

    2) Insurance. In general, for those w/ICD's I would be curious if they had insurance issues. I have heard these things are not cheap. What about annual maintenance? Should I expect an annual expense due too ?????

    3) Lifestyle. Short of the 6 week recovery I have read a lot that it does not impact lifestyle. Curious if there are stories of where it did. It's that 2% that I would like to hear how.

    4) Any feedback to where to have the procedure. Leaning towards Loyola.

    My wife is over my shoulder as I am writing this eager for advice as well. This has been both frustrating and challenging for my whole family. Being in a “Gray” area of medicine without clear alternatives or answers is tough. This message board has been really informative and we plan on joining the HCMA asap.

    Thanks in advance for the help !!!!

    Dave and Cathy


    [Re: Newly Diagnosed, To ICD or not to ICD]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 07-28-02 09:36


    In my experience, the ICD has really been no problem. I have had mine for 1 1/2 and I never notice it. You can see a bulge on my chest without a shirt on, but with clothes it has never been noticed.

    I have a Medtronic Gem. There are 3 companies that make ICDs however, Medtronic and Guidant have most of the market. You can check their sites for more information on the newest devices. I do have to go to the doctor's office for them to read the device, but again this is nothing. They put this mouse like device over the ICD and that's it. In fact my true only complaint is the videos the companies put out to "help" patients. The one from Medtronic was so simple it had patients writing on a blackboard and one clanging symbols to represent the ICD. Guidant's was better but kept saying you could go to the beach and no one would notice, but they never showed a patient in a bathing suit.

    As for insurance, I have never paid anything and I have an HMO. The implant surgery is simple, and any major hospital could easily do it. The follow-up appointments are just like doctor visits. By the way, there is another site dealing with ICDs called zaplife.org which can give you tons of information.

    I hope this helps, and that the ICD solves the problem. Be aware though that it is easy for me to say I do not notice my ICD because it has never fired. Those who have felt the device go off have had different opinions. Also, for me the ICD isn't the answer. I have had 2 syncope edisodes lately and one near syncope and the ICD never fired. I am off to the Cleveland Clinic in 10 days for a second opinion to see if I need an ablation or myectomy.

    Good Luck



    [Re: Newly Diagnosed, To ICD or not to ICD]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-28-02 11:06

    Dear Dave and Cathy

    If Dr. Maron told me I needed an ICD, I would be in his office the next day to schedule the surgery. He is one of the best HCM guys there are and he knows of what he speaks.

    While it would be nice to have the procedure close to home, this is the kind of procedure where you want someone who can do it in their sleep. You don't want any mistakes or need any "touch ups." You can ask the Loyola people how many they've done vs. how many Dr. Maron and his guys have done and see how you feel about it.

    The Minneapolis Heart Clinic can talk to you about your insurance and let you know up front if they have any issues. However, most will cover everything --Lisa quoted me about 35K for surgery and 35K for the device, but your insurance will have an out-of-pocket cap of 2 or 3K, which you have probably already paid into since we are almost into August.

    Dave, I highly recommend that you read as much of this message board as you can --sometimes the headings don't quite tell you what is inside, but there are a lot of ICD accounts in here. It is very rare for the ICD to misfire, but if it does, they are usually able to adjust it very easily. We are hoping to have a section just for ICD-ers someday, but zaplife.org is the site to read right now for more low down.

    I also recommend calling the HCMA office at 973-983-7429 to get on the mailing list and to talk to Lisa as she has an ICD and can tell you a lot.

    as for quality of life, besides the very rare misfire issue, everyone here has reported doing very well and doing just about everything they want to. I don't have an ICD myself, but I live in Oak Park, for whatever that is worth. Feel free to e-mail me, too.

    take care,



    [Re: Newly Diagnosed, To ICD or not to ICD]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-28-02 12:28

    Dave and Cathy,

    You have been to the best, in my opinion, Dr. Maron and if he says ICD, then ICD it is. I know the concerns involved in getting an ICD, as I have been there (twice!).

    RE what device to get - you have 3 basic manufactures to talk to your doctor about - Medtronic, St. Jude and Guident/CPI.

    I have a Medtronic Gem 2 and my dad has a Medtronic gem 3. You and your doctor can go over the different devices and what options best fit your needs. You have asked if anyone follows the tech. part of this, I guess you can say that I do. I attend at least 3 major conferences per year and do my best to stay up on things on a weekly basis (yeh I know I need a hobby). I shy away from giving my personal onions on what device is best for each person because honestly that would be stupid and dangerous for anyone to make such comments on the web. I can say that each company has great information on the web and you can get the data there and talk to your doctors from an educated position.

    Regarding how should implant your device, some may disagree with me but I challenge you to find someone (doctor or otherwise) who knows more HCM patients then me, and have seen more HCM "near misses" then I! I suggest you see someone who has implanted a large number of HCM patients already. We (HCM'ers) have some unique features that can present challenges during implant, including but not limited to small veins, hymodynamic instability, adverse response to sedation (b/p falls fast!) and other technical issues regarding wall thickness that can make it difficult to test the device. Having someone who is skilled in dealing with those with HCM is important...This is more important for those with severe hypertrophy (3.0cm+)

    Ask "how many ICD's have you implanted in HCM patients, how many has the hospital done?"

    Lifestyle - well all I can say here is that it has made NO negative difference in my life, infact it has added a level of security and has improved my overall outlook. I taught my daughter to do cartwheels! My legs hurt...but my heart was fine, as was my device! I travel a great deal with no worries about my heart and I know that if the worse should happen...my box is with me to be my ER in my chest!

    Insurance - should be no problem in 1999 Medicare approved ICD implants for those with HCM and once they agree to pay all others follow. The cost is a little different then what Sarah mentioned, my total bill for my first implant was about 60K - 25 of which was the device, and my insurance paid 100%. My second device was about 35K -5 years later - again my ins. paid 100%.

    Please read other posting re ICD's and you will see the recovery time is normally a great deal shorter than 6 weeks - after my 2nd device I drove from NJ to MA and did a medical conference (NASPE which is the group of doc's that put in ICD's!) I lugged in all my materials, set up the booth and worked my you know what off for 3 days, then drove back to NJ - This 4 weeks after my ICD was implanted.

    For more information please call the HCMA office I would be happy to speak to you further.

    Best wishes,

    Lisa Salberg





    [Re: Newly Diagnosed, To ICD or not to ICD]

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

    Date: 07-28-02 15:08

    Hi Dave & Cathy,

    My husband had a Guidant ICD implanted last June by Dr. J. Zimmerman in Hackensack University Medical Center, New Jersey after documenting non- sustained v tach on an event detector. This device cannot be interrogated by phone like my husbands previous pacemakers could. That would make it easier, but going to the doctors to have the info downloaded and looked at is no big deal.

    As far as insurance, we had no trouble. Our insurance company picked up the bill and continues to do so when the ICD gets interrogated in the doctors office every couple of months. My husbands lifestyle has not changed at all. It has not fired to date, though is cousins has fired appropriately three times.

    I know Dr. Maron and believe he is one of the best. We met him years ago in Maryland. He knows the disease. This is an extremely complex disease with many gray zones and different faces. HCM is not cut & dry, unfortunately. You do your research and keep asking questions so you can make an educated decision.

    my best to you both.


    [Re: Newly Diagnosed, To ICD or not to ICD]

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

    Date: 07-28-02 23:58

    Hi Dave,

    I received my Medtronic GEM III ICD in March. I must say in less than 2 weeks I had resumed virtually all of my activities, just being careful about raising my left arm above my head for several more weeks. I really can't site any adverse effects of having the device and I am reassured, knowing it is there if needed (just suppose it wasn't!).

    From my perspective, the only really important question to be answered in making a decision on whether to get an ICD is do you need it? If, based on an evaluation of your risk factors, it is indicated, all related issues (comfort, activity restrictions, etc.) are secondary. After all, it could end up being a life or death decission! I'm sorry to be so blunt, but I've seen this issue raised many times and wonder if those people have really confronted the reality of what the ICD is there for ?

    I hope you make the right decision. Good luck and keep us posted.



    [Re: Newly Diagnosed, To ICD or not to ICD]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-29-02 19:52


    Thank you for being "blunt" I think we need more of that sometimes. While going through the many challanges HCM leaves us with...sometimes it is good to say "What is this all about?" and when it comes to those at high risk it is simply "life" or the risk of not having it.

    So ask your questions, know your risk areas, find a good doctor who has experience implanting ICD's in those with HCM and do what needs to be done....Because you know what can happen if you do not.

    Oh and while we are being "Blunt" I can assure you that the many many families I speak to who have not had the "gift" of knowledge only wish their loved ones had the oppurtunity to recieve an ICD. Many of these people read this board and send me emails rather than post telling me of the wishes they had for their loved ones, I will tell you those emails are not easy to read.

    Food for thought.

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