Cleveland Myectomy Club vs Mayo Myectomy Club

[Stuart Schwartz Red Heart Find all posts View Profile Close Stuart Schwartz]

PLEASE READ the thread "Dr Lever" started by “Laga” BEFORE REPLYING.

This message board has become over weighted by The Cleveland Myectomy Club (of which I belong to). We need to hear more from The Mayo Myectomy Club. And being that Mayo did over 90 Myectomys last year, I know you’re out there (John Murray).

Both being equal, tell us how you chose to go to Cleveland or Mayo.
And for those who have not had the pleasure of having a Myectomy, please ask questions.

Lets also here from those of you that went to Dr Martin Maron at New England Medical Center – This HCM center at Tufts is less then 3 years old so I know there are not too many of you out there. But we all know Martin comes from good stock.

LET’S KEEP THIS THREAD ABOUT THE CLINICS & THE DOCTORS

[Midge Rollins Moderator Find all posts View Profile Close Midge Rollins]

I had my myectomy at Mayo 23 years ago. It was quite a new procedure at the time. Dr. Puga a pediatric surgeon did mine. I was 35 years old. Dr. Tajik and Dr. Jack Spittell were my cardiologists. I was sort of a pioneer in myectomys. I have gone there for 30 years now. Had my transplant there last year. I credit Mayo with keeping me ticking. We have always lived closer to Mayo than Cleveland. Both are excellent facilities.

[mtlieb Brave Heart Find all posts View Profile Close mtlieb]

I chose Cleveland over the others simply because of:

1. Proximity (five hours by car)
2. Insurance (covered me there)
3. Reputation (from reading the boards)
4. Connections (my local cardio knows the Cleveland docs)
5. Number of myectomies performed

[jmurray Ventricle Find all posts View Profile Close jmurray]

I had considered both facilities prior to speaking with my primary care physician. When we did chat about it he mentioned the work that Dr. Nishimira had done at Mayo. He had also attended a conference where Nishimira spoke and said he was impressed. Cost was also a factor for me. I was trying to use my frequent flyer miles on a smaller airline out of Denver and they were not flying to Cleveland at that time. Lastly, I just "felt" that Mayo was the right fit for me. From what I read on this board, it sounds like both facilities are amazing and are doing a great service for our community!

John

[jmurray Ventricle Find all posts View Profile Close jmurray]

another added note: I had been PMing with Lisa Innman who will be having her surgery next week at Mayo. We chatted a ton about the physicians there, and I saw a lot of positive things about both Dr. Ommen and Schaff (who was my surgeon) When I went in for eval about a month ago I was sooo impressed with Ommen, and I loved the "TEAM" approach that Mayo used in evaluating and treating patients. You are getting "more heads are better than one" on all levels. I am not sure if Cleveland works like that, but that was something that really appealed to me.

that's it - although I'm sure I will chime in again at some point

John

[Ronnie Major Contributor Find all posts View Profile Close Ronnie]

I chose Mayo, in 2003, because my cardio had a relationship with Dr. Nishimura & felt it was a better fit for me. Mayo was very accommodating about scheduling me. I did not go for an evaluation, prior to the Myectomy (as I read many of you do)- my records & videos were sent to Nishimura & he called me 3 days later & scheduled me for pretesting, heart cath & then Myectomy (I arrived on Monday, my Myectomy was done on Thurs) for 3 weeks later. I later learned that my Lung Pressures were over 95 & I was in a dangerous position, so it was important they treat me quickly.
Regarding my Surgeon Dr. DeRainie, he was also FABULOUS. The entire Staff gets an A+++, from me.
I had the opportunity to experience CCF, this past Dec, when I had 2 stents implanted (they had no clue how to do it, because it was somehow located next to my ByPass & Aorta). CCF was also GREAT, but I did find the organization somewhat lacking & I did not enjoy waiting sooo long for appointments. Once treatment begins, they are OUTSTANDING. CCF is much more convenient (3 hour drive vs 2 1/s hour plane & 1 1/2 drive to Rochester)
I would not recommend either Facility over the other-they are both Stars!

[Pam Alexson Moderator Find all posts View Profile Close Pam Alexson]

I said some of my comments in the other post about Dr. Lever but will add a few more here.

I initially went to TUFTS NEMC several years after my initial diagnosis, 2000 which I recieved at another major Boston Hospital. I had been implanted at the other Boston Hospital.

My eval that was expedited with Lisa's help was very thorough and a team approach. I was so thoroughly impressed with the entire aspect and care / concern that I recieved that I decided that day to jump ship. My family who had accompanied me were in full aggreement. That was May 2003. I had a myectomy Oct. 2003 and continue to have only positive things to say. To date , Dr Maron calls me periodically to check in . I am presently going to NEMC for prep for gastric by- pass surgery/ colectomy/hernia repair and possible gallbladder removal. Dr Maron is attentive , concerned, helpfull, supportive and willing to jump in whenever or for what ever I may need him. He is always a phone call away. He will help coordinate with the gastric people concerns and care regarding my HCM at the time of surgerie/s.

I guess you can tell I give TUFTS a AA+.

Pam

[momataz_911 Junior Contributor Find all posts View Profile Close momataz_911]

Even though I had my surgery in CCF I too think that Mayo Clinic and Dr Nishimuara is great I went to him first in January of 2004 but they would not accept my insurance and wanted a 50,000.00 deposit that I did not have. I agree that they are both excellent facilities. YOu have the #1 doc at Mayo (Dr Nish) and CCF is the #1 hospital 10 years running..


So like I said it is great. But I feel without God's guiding hand with the dr's and hospitals then what would we have.....


Christy

[Lisa Inman Dearly Departed Find all posts View Profile Close Lisa Inman]

It sure sounds like medically these top clinics are all superior. So far I've just been to the Mayo Clinic for evaluation and testing with Dr. Ommen (and myectomy next week with Dr. Schaff as surgeon.) I went to the Mayo Clinic because after I talked with Lisa Salberg for a long time by phone she recommended I go see Dr. Ommen at the Mayo Clinic--I'd read the board enough to fully trust any recommendation of Lisa's Maybe not scientific, but if anyone has made it her business it is Lisa S. I'm out west, so I imagine her recommendation was geographically influenced. Research found that my local Washington insurance covered the Mayo Clinic under the national Multiplan network, so that's what I did.

I have found the Mayo Clinic very efficient, very organized, and very personal so far. (And it is HUGE: their web page says "More than 2,500 physicians and scientists and 42,000 allied health staff work at the original clinic in Rochester, Minn.")

One non-medical aspect of the Mayo Clinic (and therefore not the top priority by any means) is that it is a huge urban size clinic plunked in the middle of a small town surrounded by farms. As a "country mouse" it was so nice to get that level of care without having to deal with the city all around it...going to Seattle to go to UWMC is one big pain for us (traffic, etc.) The town of Rochester MN is set up around the industry of Mayo medical care: hotels ring the hospital and the Mayo Clinic area, hotels all have free van shuttles that will drive you to the Mayo locations (and often anywhere else in town), hotels have free laundry facilities, etc. I have no idea how this compares to the other cities, but I imagine it is more unique.

--Lisa Inman

[Toogoofy317 Member of 1000 Post Club! Find all posts View Profile Close Toogoofy317]

Well, my experience has only been with NEMC. I pretty much could have gone anywhere I guess but I called the all knowing Lisa. She said that since I live in Florida I gotta fly. I think pretty much with me she played yenta the match maker. Well, so far it has been a wonderful match! The team there have stood by my side and I've gotten my monies worth out of Dr. M. Maron. I remember the first time he called me after my consult! It was like at eight o'clock at night. It was on my cell and was wondering who would be calling me at this time. He said this is Dr. Maron what can I do to help. I said " you can't be a doctor it's after four" He cracked up. He told me he didn't like to call while in the office because it was always hectic. I can pay more attention to YOU and see what I can do. We talked for about an hour.

I guess the big test at this point is how he's going to convince my local knuckle heads that I need to be evaluated for transplant. I also like him because he is willing t othink outside of the box. For those who know me my condition and me are anything but normal and he got down to the bottom of the problem.

I have also noticed that not many speak of Dr. Udelson and Dr. LInk.. It is standard procedure that when you are worked up there that when you get into the exam room you don't get one doc you get THREE! Each one examined me then we all had a talk together. Each one answering the question that was their aspect of the HCM! I have never had anyone at that point pay that much attention to me!

This was the first time I also met Lisa. We coordinated the appointments so we would see each other and I got to meet Becca and Lisa's counter part Adam. I knew I'd be seeing this great woman again and she'd change my life! Lisa I still got that pin you gave me. It's on my hospital ID bage so everyone sees the HCMA!


Oh yeah I love visiting Boston. Because of the first trip up there I got a set of adopted parents! THANK YOU MR ANS MRS PYNE. I had only known their son down here in Fl. He called them to see if they would pick me up not only did they offer to pick me up but let me stay in their wonderful home! These people didn't even know me and opened their hearts and home to me. Now that is good people.


Mary S.

[sandylevitt Contributor Find all posts View Profile Close sandylevitt]

also used Dr Maron and team in NEMC

When Felix looked into this, he first was thinking about going to the Mayo since they seemed to have done the most myectomies ,but we then decided to go to NEMC after Dr Maron called us at home one night. The other part of this was the we had friends and family in Boston. This was a great help to me when FElix had his myectomy. An old friend of mine took the day off of work and stayed with me. It was also the easiest one to fly to.

Having said that, I believe all 3 centers are very good and the decision probably boils down to things like logistics, personality, etc. I have to agree with Stuart about the differences between Dr lever and Dr M. Maron.

sandy

[Daniel X Junior Contributor Find all posts View Profile Close Daniel X]

I had my myectomy done at Mayo Clinic. Dr. Ommen and Dr. Sarajja and Dr. Freemen all referred me to Dr. Shaff. Im sure that whereever one chooses to have the operation, they will be happy. Both places seem pretty good.

[Sarah Brave Heart Find all posts View Profile Close Sarah]

While I haven't had a myectomy, I have been to both the Mayo and the Cleveland (CCF). Why? Well, after my stroke, my husband said, why don't you go to the Mayo since the local guys are not helping (understatement of the year). So I did. I went there four times in 2000 as my afib was very resistant, but Mayo was by my side the whole way and we finally found something that worked for a few years (I saw Dr. Klarich as my main cardiologist and a host of other electrophysiologists.)

Two years ago, my brother, who has been in afib for a over ten years, has never been seen by an HCM specialist, was having issues and I knew, by this time, that CCF had an Afib clinic and Dr. Lever, so I recommended he go there and I went along for a check up/consult half for me and half to make sure he actually went because that is the kind of brother I have.

Where am I going to go back to? Mayo. Mayo. Mayo. Now, mind you the CCF is nothing to sneeze at and Dr. Lever spent almost two hours with my brother.

That being said, everything at the Mayo was exceptional. Clockwork precision in all things. Everyone was nice and seemed happy to be there (the staff, I mean!) When I was inpatient, the doctors came by twice a day to check on me. I've never in my life felt so cared for. Patient education is very important and they literally gave me a book on HCM.

I could go on and on about the Mayo. On the other hand, CCF staff were mostly nice, one was not and others were just confused. Doctors didn't show up when they were supposed to and it was just a giant mess (Dr. Lever did show, of course, and I did meet with him, but other appointments vanished like smoke).

This is obviously only my experience and I want to emphasize that the medical care at CCF is obviously excellent. However, when I am shelling out the big bucks for the creme de la creme of medical care, I want the whole enchillada (nice mixed metaphor, eh?).

[Tigger1 Barely Heart Find all posts View Profile Close Tigger1]

You can talk Doctors and Clinics all day long. Now lets talk Cheesecake!
You havn't lived till you'ne eaten the Killer Cheesecake at the Chicago Deli at CCF. It is what I really looked forward to while I was recovering at CCF.

Let's see Mayo top that...


Tigger1

[Dorothy Atria Find all posts View Profile Close Dorothy]

Cleveland Myectomy Club vs Mayo Myectomy Club

I agree with Tigger 1! Our checkups at the Cleveland Clinic are now called the "Cheesecake Run!" In fact, a whole cheesecake was ordered to bring home to share with the whole family. They just couldn't believe we would drive some five hundred miles for cheesecake. Of course, the Clinic visits were necessary; the cheesecake was the reward.