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Symptoms worse for the last two years - septal myectomy?

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  • #16
    Re: Symptoms worse for the last two years - septal myectomy?

    I scheduled mine a couple of months in advance, but I needed to wait for both Drs. Dearani and Ommen to return from their vacations and to both be there at the same time. I think that a month or so is probably average.
    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


    • #17
      Re: Symptoms worse for the last two years - septal myectomy?

      The stiffness of your left ventricle is important, but there's no measure they can give you for stiffness.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment


      • #18
        Re: Symptoms worse for the last two years - septal myectomy?

        Gordon - regarding stiffness. On my last echo they did an additional part to measures the "flex" both vertically and laterally in order to gauge the stiffness - As I was at Mayo for this check-up I'm not sure if this is a research component or what. Rgong offers some great advice.

        Regarding travel, I think the key issue it that you've just have your chest wall cracked opened. Should you have an accident, the chest trauma (seat belt) would be far greater then if you hadn't had surgery. Depending on where you live, there may be a small regional plane that can get you into Rochester airport rather than going to Mn/SP and the 1.5-2hr commute in.

        I agree on weather - Spring/summer/early fall is the best time. There are plenty of "stories" posted here from others who've had the surgery from a variety of places and you can get a good sense of what to plan for and what to expect. I wish more folks would post them - seems to be lacking lately, Do you thing a sub-folder within this section would be beneficial for others looking?
        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


        • #19
          Re: Symptoms worse for the last two years - septal myectomy?

          I have so many questions...

          It is 2 1/2 hours to a major airport from my home, our small town does have a local airport that only flies to memphis, then I would have to board and go to Rochester from there via MN-ST Paul airport.

          I was told I would have to stay in hospital 5-6 days (is this including surgery or after surgery?)
          Do I have to get cleared by the airline in order to fly only 2 weeks after open heart surgery?
          Is riding 2 1/2 hours in a car ok only 2 weeks after surgery? (coming from the airport back home)
          Dr. Dearani said that after being released from the hospital I would need to hang around Rochester "a few" days so he could see me before I went home. How many is a few? 3? 4? 6? I guess that would be a question for him?

          My wife is very concerned about this whole thing. The nurse at the Mayo, both doctor's and the surgeon have all told us that I need the surgery and I would benefit greatly but...so many miles from home. We have a very small family...we are hoping that my son can get off work long enough to just be there with her during the surgery.

          My wife's sister can't be there and we have a friend that might be able to come if my son can't. The main thing is that I do not want my wife to be alone during my surgery and neither does she.

          So far the plan seems to be drive 2 1/2 hours to catch a plane from Little Rock Ar to chicago then to Rochester and then have surgery and plan on a total of 2 weeks in Rochester then fly back from Rochester to chicago then to Little Rock and drive home from there.

          One main concern is the 2 1/2 hour ride home...back seat? no seat belt? rent big town car?

          Does anyone know of a nice hotel connected to the Mayo Clinic. We will have to book a room for about two weeks so I'm hoping for "nice" and fairly inexpensive. Since I am having surgery at St Mary's my wife wanted to stay at a hotel connected to the Mayo so they could shuttle over the st mary's.

          Our head is spinning.
          • Diagnosed with HOCM 7/09
          • ICD implanted 8/3/09 - Mayo Clinic
          • Septal Myectomy at Mayo by Dr. Dearani on August 16th, 2012
          • I left a piece of my heart at Mayo Clinic and I am forever grateful
          • I currently take Metoprolol Tartrate 50 MG twice daily

          Comment


          • #20
            Re: Symptoms worse for the last two years - septal myectomy?

            Wow - A lot to address - I'll try to address in your order.
            Yes, the entire stay including surgery is 4-7 days (amazing isn't it!?) - it all depends on how you do.
            I did not have to get clearance as I didn't tell anyone. Flights into Rochester are an additional expense. The shuttle is like 29. each way from Mn/SP (and its not to bad after surgery. You can try to request front seat if that helps. You can also take a town car - not sure on those prices. Do get a curbside wheelchair to get you to your gate.
            I stayed 1.5 days after released, some do stay longer - but 4-6 days seems a bit much (But everyone heals/recovers differently, this is just my personal opinion. From others, the norm is 2/3 days).
            Since St. Mary's is about a mile - mile & a 1/4 from the clinic - its best to stay in that area - there are 2-3 decent hotels directly across the street (makes it easy for your visitors). They do run a free shuttle service between. The Shuttle can get crowded at times (early AM & Late Afternoon) so their may be a wait. The good thing is, once your done with testing at the clinic, all your time is at St. Mary's.
            Your other half may be able to do this alone - The surgery is only 4-5 hours long. they'll be kept aware of your status (in prep, OR, on heart/Lung, off heart/lung, in recovery. If being in a hospital is not good for her, she can take the shuttle to the clinic, view the museum on the ground floor, take a docent-lead tour of all the art, and be back in time to talk with your surgeon.
            My only travel suggestion is to get an open ended return flight. Should your schedule change (+ or -) this will allow you to change dates without a penalty.
            PS - Don't get alarmed by St. Mary's gothic appearance - Yes, its built around 1900, but the majority is a modern hospital addition.
            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


            • #21
              Re: Symptoms worse for the last two years - septal myectomy?

              thanks mbcube

              you said

              once your done with testing at the clinic
              Are you talking about testing at mayo before my surgery? What kind of testing? I just went through the echo, ecg, bloodwork and exercise test this past monday and tuesday. Will they do more the day before the surgery?

              I got my ICD at St Mary's, My wife and I viewed the chapel before we left. It was breathtaking.

              A lot to take in right with this but I am ready to get this done sooner rather than later.

              thanks again.
              Last edited by the search for moderation; 06-24-2012, 05:17 AM.
              • Diagnosed with HOCM 7/09
              • ICD implanted 8/3/09 - Mayo Clinic
              • Septal Myectomy at Mayo by Dr. Dearani on August 16th, 2012
              • I left a piece of my heart at Mayo Clinic and I am forever grateful
              • I currently take Metoprolol Tartrate 50 MG twice daily

              Comment


              • #22
                Re: Symptoms worse for the last two years - septal myectomy?

                You will likely not need any further tests unless there is a large gap in which you had those tests and when the surgery is. Every place has different protocol for time lag on blood work etc.
                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


                • #23
                  Re: Symptoms worse for the last two years - septal myectomy?

                  You will definitely have a new CXR and labwork and possibly an EKG.
                  Onward and Upward !

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

                  Comment


                  • #24
                    Re: Symptoms worse for the last two years - septal myectomy?

                    I also think you will need a heart catheter or am I mistaken? I believe I got mined a week before my surgery. I'd believe that can be done in Little Rock or maybe the other out of towners on here can explain what they did.

                    You have a lot on your plate, but you will get through this rough patch!

                    Take Care,
                    Mike

                    Comment


                    • #25
                      Re: Symptoms worse for the last two years - septal myectomy?

                      Not everyone gets a cath before surgery. I did have one, and it was done on the morning of surgery before the myectomy. They only give it if they feel that you are at some risk of also having coronary artery disease. If you are young and otherwise healthy, they will probably skip it. I had some possible indicators so they didn't want to take a chance and did the cath.
                      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


                      • #26
                        Re: Symptoms worse for the last two years - septal myectomy?

                        I found out that since my ECG was "different" than last time...they will run angiogram the day before the surgery to make sure that i don't have something else going on as well (blockage...i guess). Mayo said they would have my appointment schedule loaded for online viewing by the end of this week so I will know more soon.

                        Thanks,
                        • Diagnosed with HOCM 7/09
                        • ICD implanted 8/3/09 - Mayo Clinic
                        • Septal Myectomy at Mayo by Dr. Dearani on August 16th, 2012
                        • I left a piece of my heart at Mayo Clinic and I am forever grateful
                        • I currently take Metoprolol Tartrate 50 MG twice daily

                        Comment


                        • #27
                          Re: Symptoms worse for the last two years - septal myectomy?

                          I am scheduled for a septal myectomy at the end of July at Johns Hopkins after having struggled with progressively worsening symptoms (shortness of breath, dizziness) for the past several years. I debated having the procedure done for some time but after having gone the medication route with no significant relief, I have come to the conclusion that the surgery is my best hope. I guess my real fear is that it will not reduce the symptoms significantly. From reading the posts though that seems highly unlikely. I guess it is about managing your expectations. Best of luck to all those also facing surgery in the near future.

                          Comment


                          • #28
                            Re: Symptoms worse for the last two years - septal myectomy?

                            Originally posted by jtbell1256 View Post
                            I am scheduled for a septal myectomy at the end of July at Johns Hopkins
                            Mine is August 16th. Lets keep each other updated post surgery.

                            For me...I can see how it would be easy to talk myself out of surgery...until...HOCM rears it's ugly head.

                            for example...Since I have been back from the Mayo a few weeks ago, I haven't really been doing anything that causes exertion until the other day I was simply dragging a garden hose across the yard and I didn't think I was going to make it...sob, chest pains...If I did nothing to exert myself for the rest of my life...I might be fine but I can't live like that...not to mention, an obstructed hcm'ers stats (who doesn't opt for myectomy) on living as long don't look as good as someone with the surgery. (according to the 1, 5 & 10 year survival rates).

                            Anyway, I am looking forward to being able to breath. My wife is worried that my expectations are too high and don't want me disappointed if I am not in that 90-95% range that drastically improve post myectomy.

                            So...I am praying that my expectations are where they should be. I'm hoping for the best. I wish you all the best in your surgery and hope for a successful surgery as well as recovery.
                            Last edited by the search for moderation; 07-05-2012, 05:12 PM.
                            • Diagnosed with HOCM 7/09
                            • ICD implanted 8/3/09 - Mayo Clinic
                            • Septal Myectomy at Mayo by Dr. Dearani on August 16th, 2012
                            • I left a piece of my heart at Mayo Clinic and I am forever grateful
                            • I currently take Metoprolol Tartrate 50 MG twice daily

                            Comment


                            • #29
                              Re: Symptoms worse for the last two years - septal myectomy?

                              Good luck & Keep us posted!

                              jtbell1256 - Please introduce yourself in the - "Hello, my name is. . . " section. - Glad you found us!
                              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

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