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What do you do about timely non-life threatening issues?

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Zippythebighearted Find out more about Zippythebighearted
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  • What do you do about timely non-life threatening issues?

    So... I'm experiencing intermittent mild dizziness and near loss of balance. What that means is that I get a little dizzy(mostly when making sudden moves or making a major body shift) or just about to lose my balance but don't tip over.

    I had a checkup at Mayo in Scottsdale a couple of years ago and decided I should find a specialist closer. The cardiologist I see locally annually is HCM aware and is probably somewhere between Recognized and Under review when looking at these definitions http://www.4hcm.org/about_hcma/39301.html .
    He's been to at least one HCM conference that I know of but I don't think HCM is his total practice.

    I called to make an appointment and the soonest is three weeks out. My symptoms are not life threatening I don't think. Although it is the first time in 11 years that I've had symptoms this noticeable. I'm pretty sure the symptoms were brought on by too much exercise. I haven't exercised now for about two weeks but the symptoms remain.

    Q. What do the HCM'ers here do when you have a change in symptoms and your specialist is clear across the country?

    This is one reason I chose a doc close to me. Because I didn't want to have to travel every year or two years.
    Mitral valve repair and septal myomectomy May 1999 @ 36 yo. No ICD.

  • #2
    Re: What do you do about timely non-life threatening issues?

    Zippy, your question is a good one. When I had worsening symptoms and my specialist was clear across the country, I bought a round trip plane ticket and went back. That was my 3rd trip that year (eval, myectomy and then symptoms). Then when they got worse 3 months later, I looked at my checking account and I knew I just couldn't keep doing that. So, I searched this board and found a listing of those on the HCMA Advisory Committee. Low and behold I found a Doc who used to work with Dr. Lever in Cleveland. He is now in the Weston CCF location which is much closer. He now has 200 HCM patients in his practice. When I've had continuing issues that he can't seem to rectify, I spend the money and go back to Cleveland. Don't want to, but my heart really would like to feel better !
    Best Wishes
    Linda
    Onward and Upward !

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

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    • #3
      Re: What do you do about timely non-life threatening issues?

      Hi Zippy,

      Can you clarify: when you say dizzy, do you mean light-headed (like you might pass out), or that you have vertigo (like the room seems to be spinning)? We use the same word for both, but they're different things. HCM often causes light-headedness, but vertigo usually is caused either by inner ear problems or neural problems.

      I see an HCM specialist at the Cleveland Clinic, and a local cardiologist about 2 miles from my house. It's not really a difficult arrangement. I think most of the specialists urge patients to have someone local they can see. After all, most of us can't fly to another city for the small stuff, and if something happens and we're hospitalized, our specialist can't pop into our hospital.

      Back to your dizziness/balance: if it's vertigo, you may do well to see an ear doc.

      Gordon

      P.S. Zippy is one of my cartoon heroes.
      Myectomy on Feb. 5, 2007.

      Comment


      • #4
        Re: What do you do about timely non-life threatening issues?

        I agree with Gordon. It is important to sort out whether you are having vertigo or any sort of balance issue which is controlled by the inner ear, or whether you are feeling lightheaded like you might faint.

        If you close your eyes and move your head really fast (while sitting) or if you turn over quickly in bed, does that make it worse? Do you feel like the room is spinning or do you feel like you might just lose consciousness from lack of blood to your head?

        The answer to this question should help you determine whether you need to see an otologist or ENT or your cardiologist.

        To answer your other question, I have a local cardiologist that I see regularly. I travel to Mayo every few years. Before any major changes, I consult with both to make sure that they are both on board with the plan.
        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


        • #5
          Re: What do you do about timely non-life threatening issues?

          It could be ear, High blood pressure. Call your GP and go from there. Better be safe, than sorry. BTW, Good question!
          Marc
          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 . . .

          Comment


          • #6
            Re: What do you do about timely non-life threatening issues?

            Zippy -

            I have had one bout of vertigo and I can tell you that it is completely different than the lightheadedness I feel almost constantly - if I have to bend down or reach up too high I pass out (I have to get someone in the supermarket help me shop because everything I need seems to be either on the lowest or highest shelf).

            Definitely speak to your GP who will either refer you to a neuro or ENT or order tests on his own.

            As far as doctors -- I have a very good cardiologist across the street from me and an HCM specialist about an hour away.

            Comment


            • #7
              Re: What do you do about timely non-life threatening issues?

              Thanks for the replies. They have helped me clarify my symptoms. Just kind of typing out loud here.
              • Vertigo:

              I have vertigo when I lay down and get up. Even though I'm flat on the bed, it feels like I'm going to fall out and the room is spinning. Same thing when I get up or go from horizontal to vertical. When I'm seated and get up too fast I feel like I might fall over but there is no spinning.

              • Light Headed:

              Needs more thought. I'm not sure I know how to distinguish between being light headed and otherwise. I think I felt light headed when I got home from the hospital after having HCM surgery but that was 10 years ago and some of the details have faded. I've never fainted. Where is the fingers crossed emoticon?

              I guess I'll have to go run around the block. j/k. I don't need mind altering drugs, I can just stand up quickly.

              One thing I do know is this experience has scared the crap out of me. Thinking that I've permanently altered my heart structure is a scary thought. I've been largely symptom free. The positive aspect of this is that it has reminded me to cool it and slow down a bit. Especially with the gym time and weights.
              Mitral valve repair and septal myomectomy May 1999 @ 36 yo. No ICD.

              Comment


              • #8
                Re: What do you do about timely non-life threatening issues?

                If you are having vertigo, you need to see either an otologist, who specializes in the ear, or an Ear, Nose and Throat specialist. There are a few different things that can cause vertigo. Some are not that big of a deal and only require them moving your head a certain way. Some are more serious.

                Have you had a hearing test lately? That may be something that you need as well.

                In any event, is also a good idea to have a cardiologist nearby for when you need them and it is a good idea to get them into contact with your specialist. It is best when everyone is on the same page.
                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


                • #9
                  Re: What do you do about timely non-life threatening issues?

                  I have the same symptoms and thought I was suffering from vertigo for years when actually I have just been diagnosed with Hypertrophic Obstructed Cardiomyopathy and the reason for these feelings of being light headed and such is due to the blood flow being obstructed. Also if you have a feeling that you might faint that is called syncope and that is also a symptom of HOCM too. I would be tell these sypmtoms to a cardiologist before an ear dr. I wanted to have vertigo and ended up having this HOCM. I am just lucky that the last time I got dizzy and actually fell to my knees at work, I was around someone who was there to help me and then I went to the Dr because I was tired of always feeling bad. I am going to Cleveland Clinic next week for my first consultation with Dr. Lever. Have been on 25 mg of betablockers for 2 months and I am feeling better, but know that I probably will have to have surgery of my mitral valve and septum in the future.

                  Comment


                  • #10
                    Re: What do you do about timely non-life threatening issues?

                    You may want to ask your doc about this.

                    http://my.clevelandclinic.org/disord..._overview.aspx

                    These simple exercises really can be helpful.
                    Best wishes to you.
                    Theresa
                    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.

                    Comment

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