If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

My mom is up for a Myectomy... What can we expect?

Collapse

About the Author

Collapse

Proximus Find out more about Proximus
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    So...
    I gave my insurance company a call to see if procedures and what not would be covered at either Mayo or Cleveland and I was informed that both of those hospitals are "out of network," so only 50% will be covered. Has anyone else ran into this problem? I'm pretty sure that my mom's insurance plan will be the same. I just wondered if anyone has any advice on this situation.

    -Jim

    Comment


    • #17
      Jim,

      When i needed to go out of network for my myectomy, my cardiologist wrote a letter to my insurance company stating that the level of care and experience required for a successful surgical outcome was not available within my coverage area. This is true by the way, and it benefits the insurance company for you to have the procedure done right. It only saves them money by not having to pay down the road should complications arise.

      Your situation is a bit different though, since they've already told you that they will cover you. Your goal is to get them to cover more than what your plan states, and that's a tougher sell.

      Jim
      "Some days you're the dog... some days you're the hydrant."

      Comment


      • #18
        Hi Jim,
        I’ve been away for a bit so I’m just catching up now, and if you don’t mind I’d like to through my two cents into the pot. Not about myectomies, since I haven’t had one, but about a couple of other points.

        In one of your posts you mentioned that one of the reasons you’re interested in your mom’s case is that you expect to be following in her footsteps (among all the other reasons.) Well, that doesn’t necessarily follow. You might in time be faced with the exact same problems, but then again you might not experience any of them – exactly. Two children of the same parent may have totally different experiences with the disease. One might present early in life and have a rough go of it, while the other may not have any symptoms their entire life – yet carry the same HCM genes. (Of course let’s not forget their other sibling that doesn’t even get the errant genes.) Every case must stand or fall on its own particular peculiarities.

        The other penny has to do with the insurance issue. I have many scars from frequent battles with my insurance – and some of the ridiculous rules and regulations they foist upon us. In your mom’s case, why not enlist an expert in the field who is very interested in her winning the issue? That is, once she has settled on a hospital and team for her procedure, why not contact the hospital itself and ask their advice on how to get full insurance coverage for having the procedure done by their staff, in their facility? In all probability they will have had previous dealings with that particular insurance company, and have some idea of what it takes to get the full benefits – as if they were an in-area hospital. It might be as simple as getting a letter from her cardiologist stating that there is no in-area facility that can afford her the care she needs, and she must therefore go to the facility in question.

        Another possibility – especially if there is a large sum of money involved – might be for the selected facility to offer a discount for her. And yet another solution might be the changing of insurance companies to get the coverage needed, but be really careful about the ‘pre-existing conditions’ caveats – and the ability of retaining the same doctors, if she does change coverage’s.

        Hope this gives you some more idea’s for you to mull over.
        Burt

        Comment


        • #19
          So... We met with Dr. Ralph Damiano, Chief of Cardiac Surgery at Barnes-Jewish Hospital in St. Louis today, and after careful consideration of all of options, my mom has decided to get the procedure done at Barnes-Jewish. This is the thing, though. They're not fully sure that she needs the myectomy, however, she will be getting the Cox-Maze procedure done to correct her a-fib. She decided to get the Cox-Maze procedure done at Barnes-Jewish because the procedure was invented there and they have had the highest success rate out of anyone in the country (or world for that matter) with this procedure. Before she gets the Cox-Maze done, they will do a cardiac cath procedure to determine whether or not the myectomy is necessary. If it is necessary (which I'm 99.999% sure it is), they'll just go in and take care of that while they're already in there doing the Cox-Maze. I will be sure to keep everyone informed on her status -- the surgery will take place early in April (haven't set an exact date yet).

          -Jim

          Comment


          • #20
            Thanks for keeping us posted. I do hope that all goes well. Let us know when she gets a solid date for the procedures.

            Reenie
            Reenie

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

            Comment


            • #21
              Jim

              I hope everything goes well for your mom and i will keep you and your mom in my prayers

              Shirley
              Diagnosed 2003
              Myectomy 2-23-2004
              Husband: Ken
              Son: John diagnosed 2004
              Daughter: Janet (free of HCM)

              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

              Comment


              • #22
                Jim,

                Thanks for the up date on mom. I will keep her in thought and prayer. Keep us posted.

                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
                [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

                Comment


                • #23
                  Jim,

                  Thanks for the update, i've been wondering how you and your mom are doing. Sounds like you've done your research and have made decisions you both are comfortable with, which is the most important thing. Please let us know when the date(s) of surgery will be so we can all lend our support!

                  Jim
                  "Some days you're the dog... some days you're the hydrant."

                  Comment


                  • #24
                    Well, we finally have a date set. She's admitted to Barnes-Jewish Hospital on April 4 and the surgery is scheduled for April 6. We're nervous and excited at the same time. Oh, and get this... I just found out today that I'm now in a-fib. The doctor put me on Amiodarone (400mg every 6 hours) to try to get it back in rhythm. I go back tomorrow to see if the drugs worked. I'll keep everyone informed.

                    Comment


                    • #25
                      Jim

                      Good Luck I will keep my fingers crossed for you

                      Shirley
                      Diagnosed 2003
                      Myectomy 2-23-2004
                      Husband: Ken
                      Son: John diagnosed 2004
                      Daughter: Janet (free of HCM)

                      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                      Comment


                      • #26
                        Best of luck! I hope all goes well for both of you.

                        Reenie
                        Reenie

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

                        Comment


                        • #27
                          Jim,

                          I am so sorry to hear you are in A-fib.
                          I hope the Amiodarone works for you.

                          I kind of know how your mom feels, I may be having a myectomy done soon as well.


                          I wish I could have shot of whiskey. I need one.

                          I truly wish you mom the best and a speedy recovery.

                          Hugs,
                          Eve
                          49 yrs. old
                          Diagnosed at 31.
                          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                          My brother passed away suddenly at 34 yrs old from HCM.
                          2 teenage children, ages 17 and 15.

                          Comment


                          • #28
                            Jim, Best wishes to you and Mom, Please keep us posted - Linda

                            Comment


                            • #29
                              Jim,

                              Sorry to hear that you've now got a-fib on your plate on top of everything else, but you've got a great attitude and i'm confident that you and your docs will get you straightened out soon. I'm wearing a holter monitor even as we speak to see if i've got anything going on in that area as well. Great news on your mom! She'll be feeling better before you know it. Be sure to start a new thread prior to her surgery so we can all keep tabs on how she is doing and send our good wishes.

                              Take care,

                              Jim
                              "Some days you're the dog... some days you're the hydrant."

                              Comment


                              • #30
                                Jim ,

                                You and your mom are in my thoughts and prayers. Do keep us informed , we are all here to help.

                                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
                                [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

                                Comment

                                Working...
                                X