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Is Heart Catheterization Necessary with HCM?

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mtlieb Find out more about mtlieb
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  • #16
    I have had one EP study and 3 caths. The first cath in 1975 was to verify hocm (ihss as it was called then). The second was in 1981 because i was getting more symptomatic, and the last was in 1998 one month before my ep and defib were put in. Echo's now a days are quite good but a cath is still (I believe ) considered the "gold Standard" for hocm. With a cath they can get precise thickness of the septum and exact measurements of any gradient across the obstruction. An echo gives a estimated gradient. That is why an echo is used routinely in followup. From what you have said in the past I would not hesitate to do a cath eventhough I hate the
    experience. This is just my opinion but I would sit down with the Dr., grill him to find out what he will gain from the test and then go ahead. Best of luck .
    Art

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    • #17
      Thanks Art,

      I appreciate your input, and i also realize that a catheterization may in fact be something that i need. Although i have to admit the procedure doesn't sound like very much fun at all, i am not opposed to it as long as my doctor takes the time to explain... a) what he hopes to gain from the procedure... b) what my previous tests revealed that has led him to believe this is necessary... c) explains the procedure itself to me... and d) explains the risks that may be involved to some already overworked organs of mine

      I'm just playing it safe, and more than anything, i want to review what we've done already before i go any further.

      Thanks again for everyone's help! Please continue to provide input when you feel the urge to

      Jim
      "Some days you're the dog... some days you're the hydrant."

      Comment


      • #18
        Jim, That certainly sounds like the right approach to me. I won't be at all surprised if you find out that your doctor was unaware of the messages you were given and info you were not given. That's no excuse, but sometimes things just don't happen the way they were planned. As you can see from all the messages on the board, there is so much info to be gained from a cath, but it is still an invasive procedure and needs careful explanations by someone who knows what they are talking about. Linda

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        • #19
          For Sarah..

          It sounds like you are referring to a regular cath and not an EPS, right? Just want to be clear.
          Sarah-
          Yeah, it was a normal cath.
          Tom Mc.
          Apical HCM

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          • #20
            Wow you guys have been busy here over the past day or so.
            Let me chime in a bit.
            Art - You stated the you believe "cath is the gold standard", YOu would be hard pressed to find a doctor that would agree with that statement. Echo is the gold standard in HCM. Todays echo machines are far better then those you had available in the 70's and early 80's.

            I myself have had 2 caths - fun... heck no...horrible..heck no. Risky well yes a bit they are leading wires in your heart and that is a risk on its own.

            The key here is "what are they looking for" - "why are we doing the test"
            Many of you have given personal stories and opinions BUT we are all a little different...and a cath may well be needed for some of us. If the Cath is strictly to diagnose the HCM - I would not be comfortable with that and I would seek a 2nd opinion. If the Cath is to rule out other forms of heart disease (based on your age and symptoms) this sounds reasonable to me.

            I AM NOT TALKING ABOUT EPS. We have been over that in other strings...

            You are your best advocate...ASK questions!

            Lisa
            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)

            Comment


            • #21
              I had more heart caths back in the '70s and early '80s than I can count. I know things have change significantly since then, but in the mid-70s, I had a heart cath that went very badly. I was a child and awake when a catheter broke off inside me. The doc did not have the nicest bedside manner and actually stopped the procedure to tell me to stop crying because I was making him nervous. A surgeon was flown in by helicopter to remove the catheter through two large incisions after hours of surgery. I realize this was a rare occurance, but it left me with horrible memories. Even the word catheter sends shivers up my spine. It may be extremely rare, but I wanted to point out that it has happened in the past.

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              • #22
                I'm so sorry you had that happen to you! I'm glad you're all right now.
                Reenie

                ****************
                Husband has HCM.
                3 kids - ages 23, 21, & 19. All presently clear of HCM.

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                • #23
                  pickapack -
                  This is very rare - it sounds like you had a very poorly trained person or her was having one of the worst days of his career.
                  Your story is rare - I am very sorry you had to endure it...but glad to hear from you here on the board..welcome!
                  lisa
                  Knowledge is power ... Stay informed!
                  YOU can make a difference - all you have to do is try!

                  Dx age 12 current age 46 and counting!
                  lost: 5 family members to HCM (SCD, Stroke, CHF)
                  Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                  Therapy - ICD (implanted 97, 01, 04 and 11, medication
                  Currently not obstructed
                  Complications - unnecessary pacemaker and stroke (unrelated to each other)

                  Comment


                  • #24
                    hey Lisa,
                    I know that, the only real "gold standard" would be how treatments measure up against a myectomy. I was zooming in from left field on that on. my apologies. My last cath was done to rule out an MI as my enzymes were off and ekg had changed.
                    Art Geddes

                    Comment


                    • #25
                      treatment/test

                      Dear Art,

                      Now I'm a little confused. Caths are not a treatment, they are simply a test. You can't compare it to a myectomy --not in the same category. There can certainly be a gold standard for tests as well as for treaments and I think Lisa was just saying that echos are the GS for diagnosing HCM.

                      Anyway, I'm glad you survived those nasty caths!

                      take care,

                      S

                      Comment


                      • #26
                        I think Art was just useing the term "gold standard" not infering that it is a treatment.
                        Lisa
                        Knowledge is power ... Stay informed!
                        YOU can make a difference - all you have to do is try!

                        Dx age 12 current age 46 and counting!
                        lost: 5 family members to HCM (SCD, Stroke, CHF)
                        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                        Therapy - ICD (implanted 97, 01, 04 and 11, medication
                        Currently not obstructed
                        Complications - unnecessary pacemaker and stroke (unrelated to each other)

                        Comment


                        • #27
                          Okay Folks,

                          You're beginning to scare me a little bit here with stories about wires breaking off inside you, heart attacks, etc

                          I was able to schedule an appointment with my cardiologist next friday, and we are going to review all the tests i've had thus far, and the reasons he wants me to have the cath. His nurse briefly told me on the phone that based on his notes, it looks like something showed up on the stress pictures that he wants to explore with the cath. She said it's not the enlarged septum or my screwy mitral valve, but that it was 'something', and she didn't feel comfortable talking about it with me. Well, good lord. Thanks a bunch Nurse Ratched. LOL. I'd rather she said nothing at all

                          I'll keep ya posted, and thanks for the posts, even if they did scare the crap out of me

                          Jim
                          "Some days you're the dog... some days you're the hydrant."

                          Comment


                          • #28
                            Lisa,

                            If the Cath is to rule out other forms of heart disease (based on your age and symptoms) this sounds reasonable to me
                            Hey, what does that mean? LOL. I didn't think i was that old

                            Jim
                            "Some days you're the dog... some days you're the hydrant."

                            Comment


                            • #29
                              Dont get upset ...I just mean your not a "kid" you are an adult and adults can have other forms of heart disease.
                              Please do not be scared...just be cautious and ask good questions.

                              Be well!
                              Lisa
                              Knowledge is power ... Stay informed!
                              YOU can make a difference - all you have to do is try!

                              Dx age 12 current age 46 and counting!
                              lost: 5 family members to HCM (SCD, Stroke, CHF)
                              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                              Therapy - ICD (implanted 97, 01, 04 and 11, medication
                              Currently not obstructed
                              Complications - unnecessary pacemaker and stroke (unrelated to each other)

                              Comment


                              • #30
                                Lisa,

                                LOL. Now THAT was a tactful answer! Thanks for all your help.

                                Jim
                                "Some days you're the dog... some days you're the hydrant."

                                Comment

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