?? for cardiologist

[Abbygirl2 Barely Heart Find all posts View Profile Close Abbygirl2]

I am seeing a new cardiologist(2nd opinion) on June 7th and I am expecting he will not know much about HCM.
I know the 5 risk factors for SCD and intend to tell him of them. To date I have only had an echo(several) as well as ekg's and holters(24hr and 48hr).
At my insistance, I will be getting the stress test done, are there any other tests or questions I should talk to him about?

So far I am not in the high risk group, although I am unsure of how my BP responds to excercise. Can they tell this by a chemical induced stress echo?

To add further stress to my life, on June 4th my 12 yr old has his echo, I am praying he will be HCMless...I am so stressed about this.

Anyway, as always, all input is appreciated.
Many thanks

Pam

[cynthiaG Member of 1000 Post Club! Find all posts View Profile Close cynthiaG]

Re: ?? for cardiologist

Pam,

I too share your same fear. I have a 10 yr. old son. He had an echo done a year and a half ago and he was o.k. I understand that it can show up in early adult years..but remember, he has a 50/50 chance of having HCM. It's not like the odds are against him. I have 3 siblings and none of them have HCM. I was the only one that inherited it from my father. Hang in there and it is not the end of the world if he does. That's my feeling. Just think, just a few years from now they will be making more progress with new meds, etc. for this. As far as tests you should have, I go to an HCM specialist in Boston, MA and had an echo....he felt that I would not be at risk for sudden death but they wanted me to have a stress test and an MRI (gives a MUCH clearer picture than an echo), so I would go along with having one done....good luck and keep us posted

[Laoshur Member of 1000 Post Club! Find all posts View Profile Close Laoshur]

Re: ?? for cardiologist

Pam,

I hope everything goes well for both you and your son. It was my understanding that, yes, a chemical stress test that shows a drop in bp is reliable for assessing the need for a defibrillator. Both Dr. Gilligan and "Dr" Lisa told me that. But now I am not so sure because Dr. Gilligan's associate is saying he wants to do an EP study to assess this. So, I think the answer should still be "yes", but am not sure.

Rhoda

[Reenie Super Moderator Find all posts View Profile Close Reenie]

Re: ?? for cardiologist

Rhoda, did Dr Gilligan's associate say exactly why he wanted to do the EP test? I am going to the HCMA meeting and can ask the big guys if you want if there is any (or much) valid info gained from an EP study in an HCM patient to determine the risk of sudden cardiac death.

Reenie

[Abbygirl2 Barely Heart Find all posts View Profile Close Abbygirl2]

Re: ?? for cardiologist

I know that question was directed to Rhoda but I would certainly like to know how significant an EP study is for patients with HCM.

My son(12yrs) has been having some symptoms so I am a nervous wreck. I know we have to take it day by day and deal with it as we go, but when it comes to the kiddies, it is so hard to watch them suffer. He was checked 3 yrs ago and was fine...keeping my fingers crossed. I just want to get in there and get it done.

Being 12, how often should he get checked via echo? He plays hockey all winter and I would actually like him to be checked again in October before the season starts, is that unrealistic? That would only be 5 months away, but ....heck I should just buy an echo machine and give my kids echo's monthly...or daily.... Ahh the stress of it all. Does it ever end?

Take care all,
Pam

[Sarah Brave Heart Find all posts View Profile Close Sarah]

Re: ?? for cardiologist

I know Canada tends to go longer between visits/checkups than we do in the US. The standard here is annually. But if you son has grown a lot in 5 months (as kids can do), then it is not unreasonable to get an echo before the season starts.

EPSs are not really a great tool for determining sudden death risk in HCM patients. I've been to Mayo, Cleveland and only my local hospital wanted to do one, so that should tell you something.

Good luck to you and your son.

S

[Burton Borrok Dearly Departed Find all posts View Profile Close Burton Borrok]

Re: ?? for cardiologist

Hi folks,
I never had an EP study to the best of my knowledge. But I have had quite a number of angiograms and angioplasties, which appear to be remarkably similar to an EP study from the patient’s point of view. If you have any questions on the procedures that I experienced, I’d be happy to discuss them with you.

In the meantime I did run across the following information -

An electrophysiology study (EP study) is a procedure in which a thin tube (catheter) is inserted into a vein or artery (e.g., in the groin) and guided to the heart, where it can perform specific, essential measurements of the heart’s electrical activity and pathways. These measurements are particularly helpful in the diagnosis of abnormally fast heart rhythms (tachycardias) or abnormally slow heart rhythms (bradycardias).

The results of an EP study may lead to further treatment, such as the implantation of a pacemaker or implantable cardioverter defibrillator, or a prescription for antiarrhythmic medications. Since EP studies can pinpoint where abnormal rhythms are coming from, the physician may decide to perform a catheter ablation. This removes stray impulses and restores the heart’s normal electrical activity.

If the physician does not need to do additional procedures (e.g., an ablation) during an EP study, then people can go home after about six hours. However, a hospital stay of up to 24 hours is usually necessary if additional treatments are performed during the EP study.

The above information, and lots more, is at -

http://www.heartcenteronline.com/myh....cfm?ARTID=128

I hope that was of some help.
Burt

[Toogoofy317 Member of 1000 Post Club! Find all posts View Profile Close Toogoofy317]

Re: ?? for cardiologist

I had an EP study done about a year or so ago. My then cardiologist thought it would put an end to my so called "symptoms". Lisa and Sarah both told me that it wasn't a very conclusive test for those of us with HCM. But I never listen and I wanted to shut this doctor up. Well, anyway we did the study about eight hours after my appointment. They did get my heart into v-fib and shocked me while being AWAKE! Now I know why they tie you down because I would have beaten that doctor. They sent me on the two hour drive home immediatly after the procedure with burn marks on my chest and back. They said that the test was inconclusive and that I have nothing to worry about.

That is when I decided that I needed to see a specialist in HCM. Came to find out I had at least three risk factors for SCD and I got a defibrillator a month later.

Now EP studies are not all like my experience but but I don't see a need having one in an HCM heart because it is not a good indicator for SCD. If it is for other reasons that is a whole new ball game.

Mary S.

[Laoshur Member of 1000 Post Club! Find all posts View Profile Close Laoshur]

Re: ?? for cardiologist

Reenie,

Thanks so much for asking the big guys for me. What Dr. Gilligan's assistant said was that Dr. G wanted to do the EPstudy to determine the need for a defibrillator. I was totally shocked (no pun intended, but not a bad one anyway ) because you may recall that I had this done last summer and they radioablated 26 areas of my heart at that time. Before I had that I had many of you on this board tell me to object to the test. Dr. Gilligan said at that time that it was necessary because there was some question about the cause of my problem - that is whether it was HCM or not. However, afterwards he assured me that it was HCM. I do feel that the ablations helped stop some of the arrythmia problems I had been having, but I know that Dr. Gilligan thought then and now that I was also probably having atrial fib as well that was causing my fluid retention. This problem has gotten increasingly severe so I am sure that that is probably partially what he is looking for.

In February I had a dobutamine stress test to see how my heart responded during stress. He mentioned that if my bp dropped, that we should "revisit" the possibility of a defibrillator.

Almost immediately after starting the test I began to have severe back pain. The nurse thought it was from the position I was in, and I was too distracted by it to tell them that I thought it was my heart. Shortly afterwards my bp dropped sharply as soon as my heart hit 111 bpm. When they tried to get me up afterwards, my bp fluctuated in unexpected ways according to the nurse doing the test. She had me lie down and sit up several times, so I gathered it was rather like a tilt table test with me doing the tilting rather than the table. The doc congratulated her on catching something that he would have missed. The doc who did the test - not Dr. Gilligan but one of his partners - said I needed a pacemaker. Dr. Gilligan did not see the test results for several weeks and then got laryngitis so only called me after I called to say I was leaving for China in two days. He also said I needed a pacemaker for "pacing and for continual monitoring" and said I would get one in July. He said "we also might be able to make a case for a defibrillator."

We exchanged emails once since I came here and it seemed that we had agreed that I would get the pacemaker and discuss the defibrillator. He also told the associate to schedule the hospitalizations for as soon after I return as possible. So, when I got the info that the hospitalization was for an EP exam it said that the purpose was to assess the need for a defibrillator and that it I needed one, it would be implanted the next day. It did not mention a pacemaker or refer to the stress test I had in Feb.

My sudden death risk factors are that 1) I have fainted twice and have fairly frequent presyncope episodes, 2) the bp drop on the stress test, 3?)and three unexpected and sudden heart failure deaths in my mother, her sister and her brother. But these were at ages 70, about 64, and 54 respectively, so they are questionable. I also have two other sisters of my mothers who died of known heart failure at younger ages, but they were thought to have had (and did likely have) rheumatic fever and had had very severe heart problems from childhood.

I would love to know if an EP study would help to resolve this issue, so thank you so much for checking for me. I also wrote Dr. Gilligan and his assistant and asked them to please let me know why he was doing this test, but I have not heard anything.

If anyone else has any experience with this, I would love to get some help with this. July is coming soon.

Thanks!
Rhoda

[angall Member of 1000 Post Club! Find all posts View Profile Close angall]

Re: ?? for cardiologist

Hi Everyone
Let me give you my experience and need for an EP. I was diagnosed with HCM when I was 20 (NIH in Maryland) and had a myestomy a few months after the diagnosis (1970). I had my EP about 1995 after going straight lined to determine if a pacemaker would help. After the EP the cardiologist in Allentown, PA did an ablasion and inserted a dual chamber pacemaker. I was also being seen by a cardiologist at NIH so there were two heads that were getting together to decide what steps to take and when to take them.
I know all HCM patients are not the same, and the need for different tests, implants (pacemaker, ICD) and medications.
I just wanted to let you know why I had an EP.

[Reenie Super Moderator Find all posts View Profile Close Reenie]

Re: ?? for cardiologist

Rhoda, I can still ask about the reasons for an EP study, but from what you just said I think you are a candidate for an ICD. I think if it were me or one of my family members, I would skip the study and just go for the ICD placement.

Reenie

[cynthiaG Member of 1000 Post Club! Find all posts View Profile Close cynthiaG]

Re: ?? for cardiologist

I was under the impression that doctors don't think that finding the abnormal electrical pathway and ablating are very successful with HCM? maybe I'm wrong...