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Boston vs Mayo

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mbcube Birth father died of HCM @ 49, I'm older than that now, Dx @ 48, 3 boys 22, 25, 29 all negative so far, pending future genetics Find out more about mbcube
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  • Boston vs Mayo

    Just got back from a week long trip to Boston & NY. I lucked out & my Angels won both games I attended and I was able to survive attending games wearing my Angels jersey & surrounded by some of the most fantastic fans known to man.

    But this caused me to wonder, should I need surgery, I had originally wanted to go to Mayo (and confirmed that after meeting with Dearani & Ommen at the conference), but what will my better half be doing whilst I recoop?

    Boston is a terrific place to visit, and I'm sure my better half could spend hours/days with all they have to offer, but what is there to do in Rochester MN? I'm not familar with the surgeons at Tufts, though I know & like Dr. Marty. I'd appreciate anyone's ideas.
    Thanks
    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 . . .

  • #2
    Re: Boston vs Mayo

    I am pretty sure the group up at Mayo has much more experience with treating HCM. Deraini/Ommen team is probably one of the best one-two punches you can get. I am sure your better half would stay in the arctic if it meant getting the best possible care. You are only talking about a week.

    There are things that can go wrong. Mayo's reputation isn't just the doctor that will be cutting you open. It is the labs, the nurse staff, the food staff, etc.......

    I would stick with Mayo. Now I am bias because I had the same team do my Myectomy. They did a perfect job. I have a tremendous amount of respect for those guys. I can also say, that I had some tempting options to do my surgery in the Chicago area. I am very happy I stuck with the Mayo option. Besides, Rochester isn't too bad. To be honest, the bulk of my wife's time was spent in the hospital room. You will need the day to day help right after surgery.

    For whatever it is worth, I am two years post-op. I have never felt better in my life. I worked hard on rehab and have made daily exercise a must. I am sure you will be happy you did this (once you have recovered fully !

    Best of luck with whatever decision you make...

    Dave

    Comment


    • #3
      Re: Boston vs Mayo

      Well I'm biased to Boston and have no experience w/ the Mayo or the CC. I have lived south of Boston all my life and you are right about the stuff to do.. My family would come in visit and off I would send them to do and enjoy and leave the healing and mending to me.

      As far as a team in Boston you got that 1-2 punch as well. I know that Dr Rastegar does not come to the HCM conferences.. don't hold that against him. But Marty Maron does go to the conferences, and we all know him and how special he is and how well he treats his patients as well as the other guys.

      I was complex had a tough challenge for them going in for my myectomy.... was already in rough shape for far too many years but did very well. They were thorough enough to help me throw out the garbage in my head that was dished to me at a top ten hospital for 3 years prior to their meeting me. They told me up front that they could help me by doing a myectomy when the top ten hospital cardiac docs would not EVEN consider it. I only had complications following myectomy that happen to some patients and mine was due to the severity of the disease process left to take a toll. I was 47 in 2003, when I had the surgery THAT SAVED MY LIFE..
      BTW back then I took a huge leap of faith because I was the third official myectomy from an HCM clinic standpoint at NEMC in 2003 . I figured with Lisa's support and knowledge of this team and the fact that they were straight shooters and did not dismiss me and were not willing to gamble either way with me losing my life from this obstructed HCM.. I would take the educated leap of faith .

      I was correct in my choice... and rewarded in doing so. Tufts is not a huge facility compared to other hospitals but I assure you .. you will not get lost in the mix and we have excellent nurses and medical care all the way around in Massachusetts ..and this is seen through a nurses discriminating eyes.... MINE.

      Whatever your decision you will be in the best hands NO MATTER which facility you choose.

      http://www.tuftsmc.org/

      Watch the videos they are accurate like d them all especially the transplant one.

      Rastegar, Hassan, MD
      Gender: Male
      Office: 800 Washington St.
      #266
      Boston, MA 02111
      View Map
      Phone: 617-636-5528
      Education and Post Graduate Training: Pahlavi University Medical School, 1974
      Hospital of the University of Pennsylvania, Philadelphia, PA; Northwestern University Medical Center, IL
      Specialties: Cardiothoracic Surgery
      Surgery
      Foreign Language: Farsi
      Board Certifications: Cardiovascular Surgery, General Surgery, Thoracic Surgery


      Maron, Martin, MD
      Gender: Male
      Office: 800 Washington St.
      #70
      Boston, MA 02111
      View Map
      Phone: 617-636-8066
      Education and Post Graduate Training: Tulane School of Medicine, 1999
      Washington University School of Medicine; Barnes-Jewish Hospital; Tufts-New England Medical Center
      Specialties: Cardiology
      Medicine
      Board Certifications: Internal Medicine
      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


      • #4
        Re: Boston vs Mayo

        Originally posted by mbcube View Post
        I was able to survive attending games wearing my Angels jersey & surrounded by some of the most fantastic fans known to man.
        We were in Boston last Tuesday-Wednesday to see Emily's five doctors at Tufts. We were on the Green Line before the Red Sox - Athletics game, with the subway packed with fans. There were some pretty heated discussions between Sox and A's fans, and we thought that the LA fans were pretty committed and not risk adverse to be on that subway. Pretty ironic if you were one of them!

        We have had a lot of positive experience at Tufts, but we're comparing it to our local hospital at home and other health care experiences. All the staff take the time to really show they care, and they all treat Emily like a princess (how did they know?). Dr. Marty Maron is amazing, and not the least of his strengths is to admit what he doesn't know. He has consulted with other specialists about Emily's case, and is now sending us to Children's Hospital in Boston for an evaluation by their transplant team, in case it comes to that. Despite her intractable diagnosis and uncertain prognosis, he continues to think about what can be done to manage her illness. I don't think you'd go wrong at either place. However, I have to believe that Red Sox fans are the best fans in baseball.

        Comment


        • #5
          Re: Boston vs Mayo

          I will simply say they are both great programs and the choice is a personal one. I have seen great outcomes from both centers, they have different cultures - not better or worse just different- they both have great people and in either place you will get wonderful care.
          At the end of the day it is YOUR life and YOUR choice.
          Sorry I did not point you in a specific direction... but it is good to know that you have 2 great choices!

          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


          • #6
            Re: Boston vs Mayo

            I agree with Lisa the choice is yours to make from 2 great places. Rochester is very diverse with lots of culture. Only an hour from Minneapolis, but not as savvy as Boston. I am sure your wife no matter where you are will spend the majority of her time with you. Keep us posted.
            Midge

            Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
            ICD&Pacemaker 1996
            Heart transplant March 19, 2004 @ Mayo Rochester
            Mom of Kaye.

            Comment


            • #7
              Re: Boston vs Mayo

              Hi there,

              Well, you know where I am going to vote....

              I chose Rochester for myself for the following reasons:

              -the volume -- Mayo and Cleveland perform the largest number of myectomies in the U.S.;
              -the ease of travel and relative affordability of plane fare to Mayo--I flew nonstop to Minneapolis and then rode in a car or shuttle to Rochester... a little over an hour. Or you can fly into Rochester if you change planes in either Chicago or Minneapolis;
              -the affordability of lodging and food in Rochester. Much more affordable than either Boston or Cleveland
              -the organization and efficiency of Mayo. It is unequalled in my opinion. I have never seen any hospital so efficient and patient friendly
              -the friendliness and hospitality of the people of Rochester in the restaurants, hotels, etc. Everyone there is so friendly and supportive. There is none of the hassle factor you get when you visit a large city. Everyone there tries to make your experience in Rochester as easy as possible.
              -and of course, Drs. Ommen and Dearani rock...and so do all of the other Mayo staff.

              I have to tell you, your family will be hanging around a hospital wherever you have surgery...so, I wouldn't make the amusements in the city a factor.
              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


              • #8
                Re: Boston vs Mayo

                If Cynthia's reply didn't seal it, I'll weigh in as a disinterested -- well, dispassionate? -- bystander. Going to Boston will add another 2-3 hours to your return flight to So. CA the one time when you really want to minimize that travel time.

                And don't discount the "easier to get around in a slower-paced environment" factor of Rochester MN. I had my surgery done in NYC (other end of the spectrum) mainly because it was the closest HCM center of excellence with an excellent surgeon. But I really wouldn't recommend it for anyone who's not within shouting distance of the NYC metro area or has family in the area. The main reason would be the hassle of having to negotiate a major city at a time when you and your loved ones are already stressed out about the surgery itself. And of course NYC is a place with lots of stuff to do and see -- once my wife figured out I was going to survive the surgery she sprung for a day-of-performance discounted broadway show ticket after visiting hours! But the remainder of the time she was at the hospital whenever she could be, and never without a good book, which was preferable to watching me sleep or watching TV.

                So all things considered, if you have to fly somewhere anyway and the choice is between two excellent facilities -- minimize that flight time, and go for the place that minimizes the non-surgical hassle as much as possible.

                Rich G
                Myectomy and mitral valve repair, April 2007, St. Luke's Hospital (NYC)

                Comment


                • #9
                  Re: Boston vs Mayo

                  I thank you all for your input. Mayo had been my first choice & after meeting the team, that just sealed it. My better half is not one to sit idlely wringing her hands while I recoop. Of course she'd be there during the operation & most of visiting hours, I just thought that she'd like a few hours off to see a museum, take a walking tour or somehow enjoy herself outside a clinical setting.

                  I do see travel time and stress levels as a factor & as long as she has a couple a good books, a movie theatre, and some decent restaurants to sustain her, I'm sure she'll be happy. Besides, I guess that my safety and well being will be major factors as well.

                  It may be a moot point, I have no idea when I will go, but I'm not getting any better & thought I could hold off till next year, but I'm getting the feeling thats not what the big guy has planned for me.
                  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


                  • #10
                    Re: Boston vs Mayo

                    So, Mark -

                    Mayo has all kinds of cool historical spots you can visit, plus the artwork in the clinic itself is museum quality. They actually have an art tour you can take. The Chihuly glass in particular is amazing. There is a chandelier in the lobby that is phenominal.

                    After my surgery, we got a wheelchair and my husband pushed me all around the clinic and downtown Rochester. We saw the first bypass machine, an iron lung, and the Mayo brother's offices.

                    And then, there are shops and restaurants all connected to the clinic so that you can go along and shop and eat, even from your wheelchair. And then, you can even walk a bit so you get your exercise. We had a little mini vacation less than a week after my surgery.

                    You can take a shuttle from the hospital to the clinic during the weekdays, or you can walk...it is just about a mile.
                    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


                    • #11
                      Re: Boston vs Mayo

                      Marc,

                      Sounds like you've made an informed choice, so just one more point to consider - one of the reasons to have a spouse or relative around as much as possible, especially during the 1st 48 hours after surgery, is to have someone who can advocate for you. No matter how good the care and how good the facility (and Mayo by all accounts will be the best), there WILL be times that an advocate can better communicate your needs, or if nothing else, get someone's attention when you can't. I recall that I suffered far more from the side effects of the anesthesia (severe nausea) than any immediate complications from the myectomy itself. I think it was the 3rd medication that finally did the trick. There was no way I was in any condition to communicate this and anything else to my IC nurse (especially since I still had the breathing tube in when I woke up), but my wife could tell when things weren't right, and I could at least nod or shake my head to yes/no questions. Even the best staff may miss or overlook things that a spouse/partner/relative can bring to someone's attention.

                      If all goes well, by the third day both you and your spouse will be bored and then she can do something about it (tour these places that Cynthia spoke of) whereas you'll be stuck with the TV remote. Although a lot of Mayo alumni on this msg board seem to find computers with internet access and post about their progress by about the 3rd day.

                      Know what you mean about trying to calculate how long you can hold off, wondering of more/different meds can help, wondering if you can tweak lifestyle and diet, etc. -- at least that's how I tried to (unsuccessfully) cope. But if you have obstruction and symptoms to the point you're a regular on this board, the tweaks just delay the inevitable. My best wishes to you for whatever path you need to take to get better, especially if it involves surgery - sounds like you're in good hands with the Mayo team!

                      Rich
                      Myectomy and mitral valve repair, April 2007, St. Luke's Hospital (NYC)

                      Comment


                      • #12
                        Re: Boston vs Mayo

                        Rich - Thanks for your input. I agree 100% for the advocate position. Before my sister died, If we didn't stand up for her on her behalf, nothing would have been done! BTW - I enjoyed your link to your recovery. After this vacation & suffering the joys of near syncopy in subway stations and very old buildings, I'm thinking I may not be able to wait until next year.
                        I went from a 5 day a week 2 hr a day gym rat to an old-fart in less then a year.

                        And Cynthia - I had no idea they had art & tours. Plus being able to get out I'm sure was a great morale booster!

                        I'm going to both my electrician and plumber next week and will start the discussion of what's next. I saw him (the plumber) a month & half ago & asked about dysoprymide but he thought that was the last chance drug before surgery & wanted to try adding a calcium channel blocker to my regime before we try that. I haven't noticed to much of a difference.
                        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


                        • #13
                          Re: Boston vs Mayo

                          Mark,
                          First of all I'm sorry to hear that your health is such that you feel you're heading down the myectomy road. However, I know you're informed enough to know, without my adding, that you're going to feel better afterward!

                          Now for what I thought I posted last night but it didn't show up.... I realize that Cleveland Clinic wasn't in your top two comparisons, but I'm going to give my two cents for my "alma mater" of sorts anyway, as much for any future myectom-ite prospect....

                          Meeting the docs from both places, and really by hearing the others on this board over the past couple years, it's obvious that you'd be in good hands at either place. However, I also have to add that you'd get that one-two punch at Cleveland Clinic also. Dr. Lever and Dr. Smedira are amazing. And I hear from some I know personally that Dr. Lytle is outstanding as well.

                          I can tell you that Dr. Lever was truly God-sent for me. NO doubt about it. On more than a couple of occasions, he really "went to the wall" for me. There was my pre-myectomy, complicated cardiac cath, which landed me in ICU (due to my weird anataomy and poor health, not because of the doctors/nurses). Dr. Lever was checking on me through the night even though he was not the cardiologist who was on-call. The cardiologists who were there attending to me told my family and me that he would be losing sleep that night over me -- that that is just what he does with his patients. He truly cares about his patients, dare I say, almost too much. But I was not about to complain or tell him to go get some sleep.

                          Then there was immediately right after my myectomy. I was using sign language to tell my family, "Pain...More pain meds....Morphine...." There are few vivid memories I have immediately after coming out of surgery, but Dr. Lever turning on his stern, "dad/authority" voice was one I will NEVER forget. He said, "I want her pain controlled NOW." If I could have spoken or moved, I think I probably would have told him I loved him and kissed his feet.

                          And too, when I HAD to have my ICD implanted, I admit I was almost a basket case. I was scared of my body reacting in a similar way as with my cardiac cath. The ball was no longer in his court, really. That part of my care was obviously up to the EPs, but it was HIS reassurance that calmed me and made me know that I was going to be fine through the procedure. And he was right.

                          I could go on, but I'll spare you. I'm not at all saying you wouldn't get this level of treatment from the other doctors/hospitals you're considering; I'm just wanting to point out that even though Cleveland was not in your running, you really do have an outstanding third choice as well. Cleveland was top notch in EVERYthing. I do not have experience with Mayo or Tufts, but I have seen the inner-workings of other large, "top 10" hospitals, and there is just NO comparison between Cleveland and those I've seen.

                          And as far as the touristy stuff, I only found later, on subsequent visits, what Cleveland has to offer. We've enjoyed our visits back there the last couple years for my annual check-ups. But I think the only times my husband left the hospital during my myectomy-stay was to shower. He and the rest of my family were pleased with the closeness of the accommodations there. Even though you said your wife is not the type to sit around, I would bet she might be at least the first few days, and Rich has a very good point about advocacy. I was grateful to have my family there. If she's not needed as much, there's probably plenty to do at each place, so personally, I wouldn't really add that to the list of things to consider.

                          Best wishes as you try to sort out if and when to have the myectomy. I know it's not easy. Take care,
                          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


                          • #14
                            Re: Boston vs Mayo

                            I can appreciate that you want your spouse to have things to do while you are in the hospital but the bottom line is your health, as you point out.

                            and while few cities compare to boston (my bf just came back and wants to relocate!) rochester is not completely devoid of charm. here is the tourit's bureau site: http://www.rochestercvb.org/ also mayo has a concierge that can help you find stuff to do. and yes, the art collection at the mayo itself is gorgeous!

                            my sister brought crafts for us to do in the room. and a board game.

                            s

                            ps cleveland is certainly great. but i've been to both and i would pick mayo for any of my surgeries. you can PM me if you would like more detail.
                            Last edited by Sarah; 08-06-2008, 02:25 AM.

                            Comment


                            • #15
                              Re: Boston vs Mayo

                              Hmmmm...interesting discussion.. I was looking at the photo gallery and there have been changes @ Tufts Medical Center besides the name change.. a few additions and some different faces.. all good.
                              I know our HCMA president and her family go to Tufts medical center for all their expert HCM care....I was thinking; wondering ..I do not believe it is the simple geography or the tourist factor that brings them North.


                              http://www.4hcm.org/gallery2/main.php?g2_itemId=986

                              Call the HCMA office as well as getting all our PERSONAL opinions and preferences here. Speak to the expert who has the most knowledge and experience and oversight from all her interactions. That's what I did when I was in the same situation. In the end you will be most comfortable with your personal choice. AND Marc.... it really is a personal choice that you will be basing your decision on. None of us have had procedures at all the individual centers of excellence let alone visited them all ..so NONE of us can be unbiased in our recommendation. Remember all the centers are centers of excellence and Lisa works hard at ensuring that the patient experience is a good one and of course the operative course is superb at all centers listed here or recommended by the HCMA.

                              Best wishes Marc.

                              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

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