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I have had the following procedure...

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Lisa Salberg Find out more about Lisa Salberg
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  • #46
    Re: I have had the following procedure...

    I am scheduled to go to the VA Hospital on Thursday at 3:00, at that time a "team of expects" will try to determine what my problem might be.

    I have had 2 BAD 'seizures' in the past month. This is the 1st time since the Myectomy that this has happened. About 2 weeks ago my wife took me to WalMart, we walked to the back and I suddenly because disoriented, short of breath and needed to SIT. She got a motorized cart and won't let me shop without one now. Yesterday, I was quietly sitting at my computer, when I started gasping for air, again became disoriented and after finishing my work...and in both instances...laid down and rested, I became VERY sleepy and, although worried about falling asleep, dozed off several times. I took pain pills given to me after the surgery containing 30mg Codeine and 300mg Acetaminophen, I'm not sure if they helped, but after the 'naps' I slowly started feeling better.

    I did not go to the ER, although probably should have, but will explain the events on Thursday.
    Diagnosed with 'murmur' 1991; confirmed HCM, 1998; Myectomy, Jan. 2007; Pacemaker, Feb. 2007; no previous symptoms before 1991. Vietnam (15 months), 1967-68; Military Training Instructor, 1969; played most sports and had no health issues.

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    • #47
      Re: I have had the following procedure...

      Bob I am very sorry to hear this is happening to you and it must be very unnerving to say the least and I am anxious to hear how the "team " will find you.
      Could you just clarify your terminology of "seizure" as to what happened. Is this the term you give these or did someone in the medical profession refer to these episodes as a "seizure?" Also wondering if you had an actual seizure from symptoms of your HCM that got worse for you at those moments?

      It is just a little confusing and i am sure others are also wondering.

      Thanks and hang in there...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
      Myect.@ Tufts, Boston:10/5/03; age 50. ( gradient@ 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


      • #48
        Re: I have had the following procedure...

        Hi Pam,

        I chose the term 'seizure' for lack of a better explination. This event comes without warning, in both cases I was having a normal day and around 2:00 in the afternoon I suddenly start gasping, become dizzy/disoriented to the point of feeling like passing out, my chest aches where the incision was made and I need to sit/lie down. This event is VERY similar to what I experienced prior to the Myectomy. Unfortunately, the VA tested my lungs, gave my several Echos and an EKG everytime I went in, and until the surgery believed there "was nothing wrong with" me.

        There is no other choice for me, but to go to them. Because I have suffered from PTSD since 1968, I could never stay employed long enough to gain any form of insurance or retirement benefits, the VA is all I have...and I could get into an even longer story about the abuse I have received from them for having PTSD and HCM. Everytime I request help the VA asks if I'm "still collecting SSDI" and denys further benefits. My problems are blamed on HCM and therefore, NON-SERVICE CONNECTED!!!
        Diagnosed with 'murmur' 1991; confirmed HCM, 1998; Myectomy, Jan. 2007; Pacemaker, Feb. 2007; no previous symptoms before 1991. Vietnam (15 months), 1967-68; Military Training Instructor, 1969; played most sports and had no health issues.

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        • #49
          Re: I have had the following procedure...

          That makes sense Bob ....I found a very interesting story about a particular family's journey with HCM and in it the writer refers to the episodes as "heart seizure."

          Tragic story but a good read:

          http://washingtonstate.scout.com/2/13411.html

          Pam

          For accuracy you could probably define your episodes as presyncopal in nature :

          http://pediatriccardiology.uchicago....ope%20body.htm
          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
          Myect.@ Tufts, Boston:10/5/03; age 50. ( gradient@ 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


          • #50
            Re: I have had the following procedure...

            I'm back!!!

            Met with my 'team' of one last Thursday at the Minneapolis VAMC. She did my blood pressure 4 times, came out with 147 over 79 average and after almost 2 hours of talking about my expierences has pretty much eliminated anything to do with the HCM. She will meet with Dr. 'T', my cardio doc, to discuss my high blood pressure and 2 seizures. The seizures did surprise her. She said my Aorta valve was small, (typical in females, moreso) and could be the cause of the chest pains and elevated blood pressure.

            I talked about the Agent Orange situation, but she made no response, I also mentioned this site...again, no response.

            While in the waiting room, I noticed several 'flyers' tacked to the Bulletin Board about HCM, but noone there seems to know anything about it. It's very frustrating to deal with these people, who pretend to know so much, but give me blank stares when I talk to them.
            Diagnosed with 'murmur' 1991; confirmed HCM, 1998; Myectomy, Jan. 2007; Pacemaker, Feb. 2007; no previous symptoms before 1991. Vietnam (15 months), 1967-68; Military Training Instructor, 1969; played most sports and had no health issues.

            Comment


            • #51
              Re: I have had the following procedure...

              My mother in law was having similar episodes to yours and she had very high blood pressure, like about 190/90. She has not been diagnosed with HCM, although I'm fairly sure she at least carries the gene for it even if it hasn't manifested in her. I hope you get answers soon.
              Reenie

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

              Comment


              • #52
                Re: I have had the following procedure...

                Originally posted by Seabee Vet View Post
                I'm back!!!

                [FONT=Comic Sans MS][COLOR=#000080]She will meet with Dr. 'T', my cardio doc, to discuss my high blood pressure and 2 seizures.

                While in the waiting room, I noticed several 'flyers' tacked to the Bulletin Board about HCM, but noone there seems to know anything about it. It's very frustrating to deal with these people, who pretend to know so much, but give me blank stares when I talk to them.
                Nice 'team'....sounds like they sent you to a nurse pract. under one of the cadio drs.

                Just wondering who Dr. 'T' is as Tony goes to MVAMC also and has seen many of their Drs. but I can't think of who that is. His head card. at this time is Dr. Annod (not sure about spelling). My verdict is still out on him right now.

                Tony had some of his best care under Dr. Ward when he was on staff a few yrs. ago. Very knowlegable and great bedside manner. Too bad he only comes in for occassional surgeries now.

                Curious...What waiting room did you see the flyers in? I have never noticed anything about HCM tacked up before and would like to check it out when we go in Nov.

                -Missy
                Husband diagnosed w/IHSS 1975 (age 18), Myectomy 6/12/86 (29), Myectomy w/mitral leaflet trim 6/14/90 (33), Mitral Valve replaced 8/91 (34), Pacemaker 11/9/00 (43), Atrial Ablation-unsuccessful ?10/02, Atrial Ablation-successful ?2/03, CHF 6/07, CRT-D implanted 10/15/07 (50). We're just keepin' on keepin' on.

                Comment


                • #53
                  Re: Procedure poll

                  I had my myectomy, valve replacement and ICD surgery March 26, 2008. I am doing good. I am new to this site and trying to find my way around as weird as this may sound it is comforting to know that others are out there and almost everyone has had my same experience with HCM.

                  Comment


                  • #54
                    Re: I have had the following procedure...

                    I had septal alcohol ablation done at U.W. in Dec. 2008 was diagnosed in 2003 with hypertrophic obstructive cardiomyopathy. This was my 2nd opinion before going ahead with ablation. I chose the U.W. & Dr. Douglas Stewart did the procedure.. going for a 3 month check up today. Feel good, did have some problems right after procedure with a junctional rhythm for several days.

                    Comment


                    • #55
                      Re: I have had the following procedure...

                      Originally posted by MissyH View Post
                      Nice 'team'....sounds like they sent you to a nurse pract. under one of the cadio drs.

                      Just wondering who Dr. 'T' is as Tony goes to MVAMC also and has seen many of their Drs. but I can't think of who that is. His head card. at this time is Dr. Annod (not sure about spelling). My verdict is still out on him right now.

                      Tony had some of his best care under Dr. Ward when he was on staff a few yrs. ago. Very knowlegable and great bedside manner. Too bad he only comes in for occassional surgeries now.

                      Curious...What waiting room did you see the flyers in? I have never noticed anything about HCM tacked up before and would like to check it out when we go in Nov.

                      -Missy
                      Sorry for my slow reply Missy, Dr. "T" is Dr. Tholakanahalli...that's why he is called "Dr. T". When I first went to Cardio (3D) Dr. Li was assigned to me, he moved up to more important duties...thankfully. He and my Primary, Dr. Hanson, until 2006 (from 2003) thought my HCM was 'a joke'. When I was sent to Dr. T, he IMMEDIATELY met with Dr. Ward (October 2006) and told me I was going to have the surgery and I had nothing to say about it. I went in in January 2007.

                      The MVAMC is NOT very concerned about "nonservice connected" problems and tries to ignore them. Dr. Ward is now at the U of M and is called in when needed to the VA.

                      I saw the 'flyers', probably in a rack in the Pulmonary Clinic waiting room on 3rd floor, I belive that 3B or C.

                      andiS
                      My present VSO (Veterans Service Officer) in Dakota County has the same heart condition (HCM). She went to Texas twice for Septal Ablation and neither has worked. Last week she finally went to the Mayo and had the Myectomy, I have kept in touch through the VSO Office and she is home recuperating and doing fine, now.
                      Diagnosed with 'murmur' 1991; confirmed HCM, 1998; Myectomy, Jan. 2007; Pacemaker, Feb. 2007; no previous symptoms before 1991. Vietnam (15 months), 1967-68; Military Training Instructor, 1969; played most sports and had no health issues.

                      Comment


                      • #56
                        Re: I have had the following procedure...

                        I have had the myectomy at Mayos on May 20, 2008. This past year has been great. This year I am going on the annual canoe trip to Northern WI and then back to whitewater rafting in WV in the Fall to celebrate my 80th
                        birthday with my family.
                        Elmer Schirmer, Naperville, IL

                        Comment


                        • #57
                          Re: I have had the following procedure...

                          I had a septal myectomy on June 10th at CCF with Dr. Smedira. Now almost 3 weeks past I'm doing very well...feel better and stronger each day. Had a little bout with a UTI and some oozing from the chest tube site, but a strong dose of anit-biotics seems to be helping with that. I miss driving and feel a little housebound, but have friends and relatives who try to get me out every now and then. Start cardio rehab eval next week and see how much of that I want to get involved in. It's amazing how well you heal from such a major surgery. Onward and upward. Christa Slater
                          Myectomy-Cleveland Clinic
                          June 2009
                          Aortic Valve Replacement, Mitral Valve Replacement, Tricuspid Valve Repair
                          December 2014
                          Dr. Smedira

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                          • #58
                            Re: I have had the following procedure...

                            I was diagnosed with HCM the end of June, started medication July 7th, saw Cardiologist July 8th and had AICD put in July 10th. I am now being referred to Mayo for further treatment.

                            Comment


                            • #59
                              Re: I have had the following procedure...

                              Hello everyone ,
                              I am now 5weeks post Septal Myectomy I have enjoyed this site . I wish I knew of it before long before i was hospitalized and had to have a myectomy .
                              I did not realize how bad my symptoms realy were . it had become normal for me the last 2 years I knew something was wrong , I just had no idea what it was .

                              Thank you for all the info .

                              Have a great day

                              Comment


                              • #60
                                Re: I have had the following procedure...

                                I am now 5 weeks post op. I am happy to here you are feeling better . I also miss driving myself places . My wife is going crazy because i always want to go someplace. It only gets better as each day passes . Get envolved as much as possible . Have a great day

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