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My husband's heart - non HCM related

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Dolly (Andrew's mom) Find out more about Dolly (Andrew's mom)
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  • My husband's heart - non HCM related

    I am sorry to post here about this since it is not HCM related, but I need some suggestions/opinions from people I know are knowledgable in cardiac issues and whose opinions I trust! My head has been spinning for weeks over this!

    I will try to make this short.............My husband has been suffering from what appear to be TIAs (Transient Ischemic Attacks) or mini-strokes. He has sudden episodes where he loses his sight, gets dizzy, the whole left side of his body goes numb from shoulder to toe, and he loses his balance. These happen about once every 2 months. he also battles constant headaches every day.These symptoms sent us to a neurologist a year ago. He brushed us off, said Bob was too young for strokes, (52) and said it was caused by migrains. My husbands' last TIA type attack was much more severe and was witnessed by co-workers. His employer requested he check into it again due to the dangers it poses at work.

    So a month ago we went to a different neurologist who sent him for several tests. (full blood work-up, MRI, MRA, echo, TEE, etc.) What the neurologist told us is...........the MRI and MRA came back good. However the echo and TEE showed several problems with his heart. He has a PFO, an atrial septal aneurysm and he also has mitral valve prolapse with regurgitation.

    Even though I know quite a bit about the heart and the terms used this guy had us so confused when we left! He kept contradicting himself over and over again. He told us he wants to just treat this with a daily asprin. he said he feels coumadin is more of a risk then the heart defects themselves. He said he also feels having any type of surgery to fix the defects is more of a risk then living with them.

    then I started asking questions, such as .....
    Is there shunting with the PFO and if so how much shunting is there?
    What level of regurgitation is there?
    Isn't having all of these together quite a bit more risky then if he had just one of them?
    etc...

    He finally said "Well, let me just read to you what the cardiologists report says." As he was reading he would come upon something and stop and make a comment like "oh, well that puts you at even higher risk.!" And as he was reading we found out some of the details. The report stated he had "significant" shunting from right to left, AND THEN, back left to right. (Both ways.) It also listed the MV regurgitation as "significant" and I don't recall what it stated exactly about the septal aneurysm.

    As he was reading these things he would comment about this or that making things more serious or concerning. We are going to see a cardiologist next week (same facility) to get his opinion, but when all was said and done the neurologist stood by his opinion of just treating my husband with an asprin per day.


    What do you all think? I know PFO is pretty common, and I know Mitral Valve Prolapse is pretty common. But when there is "significant" shunting and regurgitation, septal wall aneurysm, plus all these TIA like attacks he has had would you all feel comfortable treating it with an asprin per day?! If the cardiologist has the same opinion should we just leave it at that?
    Dolly~
    mom to Andrew(HCM) 21 years old
    Diagnosed \'95 age 5
    Myectomy \'96 age 6
    ICD implant \'99 age 9
    First ICD shock (X2) \'04
    ICD replacement surgery \'05 age 15

    *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

  • #2
    I don't know what PFO is, and I am not sure what shunting means in this context. I do know, however, that if your husband is having TIAs, he is at increased risk of having a major stroke. I wouldn't accept what this neurologist says. Have him evaluated by a good cardiologist who is knowledgeable in echocardiograms and see what is really going on with his heart. They could try other anticoagulants in addition to coumadin, there is Plavix for example.

    TIAs are nothing to shrug off.
    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.

    Comment


    • #3
      It sounds like your husband needs to see some "real" doctors who don't shrug off symptoms because someone is "too young" for them or evaluate risk factors without reading the report closely.

      I had a TIA at 31; my mom had a major stroke at 50. It happens. It is happening to your husband. Well controlled, Coumadin is not a big deal. A stroke is a big deal.

      Please get a referral to a a serious heart center like Mayo Rochester or Cleveland because it sounds like your husband's heart is very complicated.

      Most of the literature I've read states that aspirin alone is not enough when there are many risk factors. And there are side effects to aspirin as well. Doctors seem to think that it is somehow magically free from harm. Not so. Ulcers, reduced tooth enamel, allergic reactions, all can happen from aspirin.

      Keep us posted. In the meantime, despite aspirin not being enough, it is more than nothing and if you also step up the vitamin e and flax oil intake, it should help some.

      Comment


      • #4
        Are we sure he does not have HCM? How are they defining a septal aneurysm? Based on the family history I have some concerns and I would get to a GOOD center for an evaluation.
        Best wishes,
        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


        • #5
          HCM occured to me, too, actually. It has all the red flags.

          Comment


          • #6
            I should have mentioned right away, the HCM is on my side of the family. My nephew that passed away from it was my brother's son. So HCM never really crossed my mind. I never thought much about a connection with Andrew other then both my husband and Andrew have mitral valve problems.

            This neurologist explained the septal aneurysm to us as something like............ his septum is very very thin and it bows or curves into the left side of the heart with pressure from the pumping. I had never heard of a septal aneurysm before so had to do some quick reading about it on the internet!

            I am so glad to hear we are not over-reacting with our concerns about the casual attitudes we have run into. I have been scared to death with him having these TIAs and then to find he has all these defects in his heart! He had actually gotten to a point where he figured his symptoms were all in his head!

            We will see what the cardiologist there has to say next week. If we are still told the treatment only needs to be an asprin a day then we will be heading to Rochester or Minneapolis for a second opinion. (Been to both with Andrew)

            THANK YOU!!
            Dolly~
            mom to Andrew(HCM) 21 years old
            Diagnosed \'95 age 5
            Myectomy \'96 age 6
            ICD implant \'99 age 9
            First ICD shock (X2) \'04
            ICD replacement surgery \'05 age 15

            *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

            Comment


            • #7
              Dolly, I'll be thinking of you and your family. I'll be waiting to hear next week's info. Best wishes, Linda

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