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So Many Questions and lots of Difficultys with Docs


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tomanddeb Married to Tom, proud Mother of Melissa,TJ and Craig!! Find out more about tomanddeb
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  • So Many Questions and lots of Difficultys with Docs

    I have been posting on here awhile now.My son was diagnosed with HOCM,went to cleveland,had the myectomy/mitral valve repair.Now has pericarditis.Went to see local cardiologist who pushed us to cleveland.He never believed he had hocm,only a sub aortic membrane.This is our 1st visit with him post-op.What my difficultys are with the local guy is he asked us what Lever/Smedira said to us,we told him and he practically called us liars and yelled at my son..do you know how many drs.think that your symptoms were in your head? he also said we were getting the ying-yang from docs.He still does not believe the hocm diagnosis.He also said he feels he should dismiss himself from being my sons doc because he doesnt know what else to do for him.He had my son so upset that my son was crying.Then after I get home he calls and said he spoke to Lever and L said he has obsructive cardiomyopathy.I am just so confused,angry and frustrated and no longer know what to do or think.I did get a copy of the biopsy done on what they removed from my sons heart.We REALLY NEED HELP!!! And we no longer know where to turn for truth!!! My son is devastated to learn that many of the docs in phila.who examined him thought he was faking.How does anyone fake a left ventricular outflow tract obstruction?? Please help us.Thanks Deb

  • #2
    Re: So Many Questions and lots of Difficultys with Docs

    Deb, I am sorry you are having such difficulties. My first recommendation would be to find a different local cardiologist. You need one that you can believe in and who can believe you and will communicate with Dr. Lever.

    Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
    ICD&Pacemaker 1996
    Heart transplant March 19, 2004 @ Mayo Rochester
    Mom of Kaye.


    • #3
      Re: Please Help

      If a doctor told me that he no thought that he shouldn't treat me or my kid, I'd agree to it. To put it mildly, it doesn't sound as though there's a big future in your relationship with him. Not a good one, anyway.

      Hopefully someone else can make some suggestions as to whom to see around Philadelphia. I'm sure there's someone competent.

      Myectomy on Feb. 5, 2007.


      • #4
        Re: So Many Questions and lots of Difficultys with Docs

        You should report that doctor to the medical board. Please reassure your son that the Cleveland docs are the best in the country and that they have evidence in his test results that can't be faked.

        And then find a new doctor.


        • #5
          Re: Please Help


          I understand your frustration and your anger over today's appointment. My greatest concern is for your son, as I know it is yours. I am going to share my thoughts, but you need to do what your heart tells you to do. It seems to me that you need a new local cardiologist and PRONTO. Your son is having some issues that need to be followed and since your current MD thinks he should dismiss himself, he should do so. The question is how do you find a new local cardiologist pronto? Two thoughts come to mind. You will need to weigh them out. It appears that you have been to several cardio's in Philly. First, you can call Dr. Lever in the morning, explain the situation and ask him if he can recommend someone that he has worked with in the past. If you go that route, ask if he will help facilitate Tom getting an appt soon, as his pericarditis needs to be followed. The other option is to contact the HCMA office and do the same. I do not know Dr. Lever, or your relationship with him. You need to do what makes the most sense to you.

          The other thing that I want you to understand is this......your son has just gone thru a major physical and emotional event - open heart surgery. I remember that I was unable to make any rational or informed decisions in the first 6 weeks post op. You are going to have to help him thru this. I know this is hard on you, but believe me, the stress of this is much harder on him. And to answer your question, NO, it is not possible to fake a LVOT obstruction. Nor can you fake a floppy or torn MV.

          Wishing you a peaceful outcome.
          Onward and Upward !

          Diagnosed 4/07 HCM with fixed & dynamic obstruction
          Myectomy with resected cordonae tendonae 4/08 CCF
          ICD 10/08


          • #6
            Re: So Many Questions and lots of Difficultys with Docs

            I don't have anything different to say. Everyone else has already said it. Run, don't walk, to another doctor who will work with Cleveland. I suggest calling Dr. Lever's office and seeing if he has someone to recommend. If not, then try the HCMA office. I know that there is a HCM doctor in Hershey at Penn State. He spoke at the HCMA meeting last year. Below is his info. I don't know if that is too far, but I can guarantee that he would not call your son a liar. That is completely unacceptable.

            Daughter of Father with HCM
            Diagnosed with HCM 1999.
            Full term pregnancy - Son born 11/01
            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


            • #7
              Re: So Many Questions and lots of Difficultys with Docs

              I'm so sorry to hear this. It's simply appalling. Please be assured that your son did the best thing by getting to Cleveland. They are top notch. HCM can't be "faked." How absurd to even think, much more, make such a comment to a patient. He obviously does not know much about HCM. As the others have said, please do call Dr. Lever's office and/or the HCMA (phone: 973-983-7429) to find a competent cardiologist in your area who will consult with Dr. Lever. And I agree, too, that having just had major surgery can be emotionally overwhelming. Your son is fortunate to have you for support. We're pulling for you and your son during this difficult time. You hang in there, too, make those calls, and keep us updated.
              Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.


              • #8
                Re: So Many Questions and lots of Difficultys with Docs

                Having had a daughter with a major kidney defect that multiple doctors ignored for 4 years during which time several of them made me feel like I was a crazy mother, I have an additional recommendation to the excellent ones above:

                Consider asking Dr. Lever to have his office call the heart specialist he recommends in the Philly area to make the appointment for you. Ask him to have his office staff fax your son's records to that doctor. The reason for this is that a significant minority of doctors have a "not invented here (NIH)" syndrome. In other words, if the doctor himself did not find the problem, it does not exist. For these doctors, when a patient comes in and tells the doctor what is wrong, the doctor immediately rejects that diagnosis, even if it is a legitimate one from another doctor. But receiving the records before seeing the patient allows these kinds of doctors to maintain their fragile dignity by allowing them to read the data and reach the obviously correct conclusion on their own.

                I have a doctor (not my heart doc) like this. Every time I saw him he got upset that I knew something or another about my condition. So when I saw him a couple of weeks ago, I just told him I was doing fine. He immediately checked me over and made exactly the recommendation that I knew I needed. Based on previous visits, had I told him I needed it, he would have given me a list of reasons why I was wrong.



                • #9
                  Re: So Many Questions and lots of Difficultys with Docs

                  That experience with your son's local doc is an outrage. I am sorry you both have had to go through it.
                  Nothing to add to the unanimous good advice above, except that trust is a critical component of a doctor-patient relationship, and it's hard to have it with a doctor who calls a patient a liar and says he doesn't want to treat him. Also, as a patient of both Dr. Lever and Dr. Smedira, I can tell you their diagnoses are not "ying yang," and I'd be done with a doctor who thought that.
                  I'm sorry you've had to go through this. Hang in there.
                  Diagnosed (w/obstruction) 2003 at 39
                  Alcohol Septal Ablation Feb. 2006
                  Myectomy April 2007 Cleveland
                  Pacemaker dependent (no ICD)
                  Thankful and doing fine


                  • #10
                    Re: So Many Questions and lots of Difficultys with Docs

                    Deb - I too was fired from my local cardiologist and I couldn't be happier now!
                    Yes, its very difficult to deal with at the time, but now I have a doctor I can talk to, who listens, and I can trust. Thats a home-run in my game!

                    Others have given you excellent advise. Its not easy finding a local doctor who has ANY experience with HCM so you may have to accept that limitation, but its important to find one that is open to working with CCF/Dr. Lever/Smedira and you'd be surprised that its not that hard to do!

                    Also, Not sure what your insurance is, but many have extensive websites where you can get names/backgrounds and their staff should be able to tell you how they work with coordinating medical care with consulting experts.
                    Diagnosed @ 48
                    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                    AICD - Valentines Day '08, Spark Plug replaced 11/14
                    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                    Quietly going insane . . .


                    • #11
                      Re: So Many Questions and lots of Difficultys with Docs

                      Thank you all so much for the reply's.Spoke to Dr.Lever and he was outraged at what our local doc said to my son and says he should be reported to the board.Anyway we have to continue to see him for right now because Dr.Lever requested he do a echo,which we are having done tomorrow.After that i think I am going to call a Dr. Popjes who is in Hershey,Pa...if my ins.co. doesnt give us any problems.Again..thank you and will keep you posted.


                      • #12
                        Re: So Many Questions and lots of Difficultys with Docs

                        I wish I could say you were the only one this has happened to but unfortunately it is not. I went through the same thing as your son. It is all in your head! I was told nothing was wrong with me to live my life how I wanted to which included being a full-time EMT. I remember the day my life changed I had just been put through a Treadmill Stress Test while having chest pain and dizziness. They had just sent me for the three hour drive home when Lisa called. I told her what was going on and she said "you need a hcm specialist quick" So, she helped me to get my pcp to refer me and since I was young and alone she even met me at NEMC. I will always be indebted to Lisa for talking to me and meeting me that day to let me know it will be okay. Seeing a true specialist was a life changing event even though it meant I couldn't be the person I was but I'm glad I'm still here.

                        I'm still getting this all-in-your-head stuff here in Florida I'm at the point I want to run away to Boston so Dr. M.Maron will be my "only" cardiologist! I was even accused of being a pain medication seeker. When I asked the doctor to call my pain management doctor and ask her if that was the case he started yelling at me and it made me cry as well. I actually stopped taking all of my medicine for a few days and got even sicker but I just didn't want that doctor to think I was a bad person. I'm glad I have a great PCP that got me back on track but they really want me to go back to Boston but I just don't have the money.



                        • #13
                          Re: So Many Questions and lots of Difficultys with Docs

                          Mary you should talk to Dr Maron about genetic testing. The lab TUFTS uses has a contract with medicare and it was all covered. If they are able to find your mutation it becomes a validation of a different kind.

                          I was doubtful they would find my mutation and they did find it. This new validation although it led me back to the horrified days of disbelief when I first became officially labeled with HCM allowed me to become so empowered recently that I wrote a letter to the cardiologist that added to my self deprecating feelings. Back then he might as well have beaten me down with a shovel the way he treated me. I remember and will always remember those days clearly. I too experienced what you and Deb's son experienced in my own personal spin. It was awful! It only added to the burdened HCM heart trouble, shock and awe I was living daily.

                          It is uplifting to be validated. Even if one does not learn of their mutation .. It is likely that it is an undiscovered genetic mutation and will one day be learned. I have a much stronger confidence in the term, genetic HCM, after learning firsthand ..BUT more then that I am stronger in my belief that when OUR experts say it is genetic .. IT REALLY IS!
                          Additionally I can walk with head held higher and even the friends who doubted me know now that I was born this way. Family who also doubted me and wanted to think that this was not anything they would have to concern themselves with are a little more on edge these days, asking questions and really talking to their doctors.

                          I recently posted in the HCM Discussion forum on this; where you can read what was said basically and his response.

                          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


                          • #14
                            Re: So Many Questions and lots of Difficultys with Docs

                            Yeah, I'm gonna ask Dr.M. Maron if/when he calls me back about it. Actually, they did try when I was last up there but me and my blood doesn't seperate easily after six times the geneticist gave up he got a half a tube and told me next time I'm up to please pack my veins. But, I've seemed to have lost them and no clue where they are!

                            It's weird the docs down here now don't doubt I have a heart problem but they don't think non-obstructed hcm can cause chest pains. Dr.Maron said I probably had microvascular disease which is exacerbating the chest pain but I can't get that through the locals head. To everyone except my pain management doc I'm a "drug seeker"!

                            So, I'm going to call again in the morning to see if Dr. Maron is back!



                            • #15
                              Re: So Many Questions and lots of Difficultys with Docs


                              I had a myectomy done at Cleveland Clinic a year ago.

                              I, too, was dissatisfied with my doctor at home, especially after talking to experts who know what they're doing when dealing with HCM like Dr.'s Lever and Smidera. I called Karen in Dr. Lever's office and asked them to recommend a cardiologist for me. Long story short, I now go to Denver for care, even though I live in Colorado Springs.

                              I am so much happier. This Dr. is happy to work with Dr. Lever, send my info. there, etc.
                              Try to keep searching. It isn't worth being with someone you don't like.

                              Oh, also, the Dr. in Denver finally diagnosed my daughter with apical HCM. We have had her into the local cardiologist's office numerous times with symptoms, problems, even a passing-out episode. We were told by him that she needed just to cut back on the energy drinks. Huh.....? It's better to find someone, anyone, who knows what they're talking about.