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  • Cardiac Catherization showed only a little obstruction...

    Hello!

    Quick question. Dr. Henderson in Vancouver Canada, who did my cardiac catherization said that I had no obstruction at regular heart beat but maybe showed a little bit at a very fast heart beat when they injected me with a drug to increase my heart rate.. Does this make sense? So this means that I do not have obstruction and am not a candidate for Myectomy?

    My current symptoms are dizziness at times, short of breath, chest pain, fatigue, and inability to focus (probably due to meds). My septum is 31 mm thick (I am a big/muscular guy to start so compared to smaller people its not so bad?).

    My cardiologist does not feel the need for me to see an hcm specialist. Any advice?


    Thanks

    Theo
    26 years old, diagnosed April 2005. ICD July 2005.

  • #2
    Theo,

    I think anyone with HCM should be seen by one of the HCM specialist recognized by the HCMA. You have nothing to loose & everything to gain. You should want to be seen by the most qualified doctors.

    As for size - I would say “size doesn't matter”. But maybe one of the women would be more qualified to answer this. I really think Lisa is the most qualified to answer.

    Stuart
    Cleveland Myectomy Club
    August 31, 2004

    Comment


    • #3
      I really think you should see a specialist as regular doctors and cardiologist don't always find it before it is too late. My cardiologist did not find mine all he wanted to do was change my meds.. Hey you got nothing to lose and a lot to gain so see that Specialist.....


      Christy

      AKA momataz_911
      I pray that God will place his loving arms around you and hold you in the comfort of his love.

      Comment


      • #4
        Theo, I have to agree with the others, another opinion from someone with extensive experience in dealing with HCM can't hurt. That's not to say your cardiologist isn't experienced, it just gives you another opinion and possibly more options. Try to talk to Lisa in the HCMA office. She can talk with you in more specific terms about your situation. Best wishes - Linda

        Comment


        • #5
          I agree with the others about the specialist. You asked about your reaction to the introduction of the drug. Yes, it makes sense. What it means is that when your heart is under stress (exercise, etc) you do have some obstruction that isn't normally there at rest. It's not uncommon in HCM to have that. The specialist would be able to explain it all to you.

          Reenie
          Reenie

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

          Comment


          • #6
            Thanks for the feedback guys.

            I asked my cardiologist about seeing an HCM Specialist. He said that there is no need to since I don't have obstruction and the only HCM Specialists are in Toronto.

            He feels that the doctors there would be annoyed to see me since I have no obstruction at this point and the medical system would not warrant sending me to see them?

            They make me feel like I am a pain in their *ss and that I ask stupid questions. Grrrr!


            Theo
            26 years old, diagnosed April 2005. ICD July 2005.

            Comment


            • #7
              Theo,

              I think almost all of us have been in that situation, where we have been made to feel like we're being 'pains in the butt' for pursuing what our doctors perceive to be a non-issue. Unfortunately we really have to fight sometimes to get good care for ourselves.

              Just because you don't have obstruction doesn't mean that you shouldn't be evaluated by a specialist. It's actually kind of silly that your doctor said that... it makes no sense to me. Those of us with obstruction account for only 25% of the HCM population. Your doctor is saying the other 75% don't need to see a specialist? That's absurd.

              If in fact it does turn out that you have no obstruction, then there would be no reason for you to have a myectomy. The surgery only helps to relieve symptoms that are caused by the obstruction, so if you don't have any, then your symptoms are being caused by the HCM itself.

              Keep pushing for that specialist. Everyone with HCM has the right and the need to be properly evaluated by one.

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

              Comment


              • #8
                It sounds like your doctor doesn't really understand HCM at all. Otherwise he would gladly welcome the 2nd opinion. Keep pushing. I promise Dr Wigle wouldn't think you're wasting his time.

                Reenie
                Reenie

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

                Comment


                • #9
                  Jim, a little confused?

                  Originally posted by mtlieb
                  , so if you don't have any, then your symptoms are being caused by the HCM itself.
                  Did you mean the obstruction itself? Because HCM can cause symptoms without obstruction as well.

                  Mary S.

                  Comment


                  • #10
                    Mary , I think that is what he said but in a foreign language

                    Also, Theo , I agree with the others. Your doctor is behind the times. It is very important that a specialist see you in order to establish a relationship with you an HCM patient and to get your baseline from a specialty docs perspective. If you need to go back in the future then your record and history will be there and ready to measure the differences accurately.

                    Pam
                    Dx @ 47 with HOCM & HF:11/00
                    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                    Lead failure,replaced 12/06.
                    SF lead recall:07,extracted leads and new device 2012
                    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                    Genetic mutation 4/09, mother(d), brother, son, gene+
                    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                    Comment


                    • #11
                      I'm pretty sure that Jim meant that if you don't have obstruction the symptoms are from the HCM, not the obstruction. Therefore, a myectomy won't help, since it's HCM related and not obstruction related.

                      ~~Jim, if I misinterpreted, please explain.~~

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Thanks for the info Ladies and Gentlemen,

                        I will ask again to see the specialist. Maybe 3 is lucky?

                        I'd like to know more about what I might face down the road and how this progresses? I understand that every case is different..

                        It's good to hear about people that are doing well and it saddens me to hear about people that aren't. You HCMers are so strong... I truly admire all of you.....

                        Have a great long weekend!

                        (For Us Canadians)


                        Theo
                        26 years old, diagnosed April 2005. ICD July 2005.

                        Comment


                        • #13
                          Stuart this one is for you...
                          So yet again the man asks the woman "does size matter"

                          The answer is...yes and no

                          Yes, it matters in terms of risk.

                          No, it has no bearing on the size of your body or muscular build.

                          I will leave it at that for now. As I am a Jersey girl at heart I do have a few other thoughts on the topic...but we will not go there.

                          Have a great 4th of July everyone!


                          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


                          • #14
                            Hi Theo:

                            I wanted to add a bit of information to the mix, although I heartily agree that seeing Dr. Wigle in Toronto isn't going to be a waste of time even if nothing changes in your diagnosis. At least then you know you have been evaluated by the best that Canada has to offer. I would encourage you to put your request to see him in writing and send it to your doctor. By putting it in writing you have created a record of your request, raising liability issues if he doesn't make the referral and something untoward subsequently happens to you.

                            Also, when we were in Toronto last month to see the kids' pediatric cardiologist, he mentioned that Dr. Wigle is semi-retired at this point. While he is still seeing patients, I think that he has reduced his hours. If you are interested in participating in genetic testing, they have a large study underway in Toronto.

                            One last thing. You had asked recently if your doctor had studied with Dr. Wigle, and I did come across some papers that had been published with a Dr. M. A.(?) Henderson as second or third author with Dr. Wigle. Is this your Dr?


                            All the best,

                            Abby

                            p.s. Have a great 4th of July everyone.

                            Comment

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