Mayo Clinic and Myectomy

[Guest]

I have an appointment with the Mayo Clinic on April 29th. They have also set up myectomy for May 1 if the test results on the 29th agree with my test results here in St. Louis. My doctor here in St. Louis has suggested I have an alchohol ablation. I asked for a second opinion through the Mayo Clinic. They mentioned that they consider the myectomy the "gold standard" because they know the long term effects and have had good results for 40 to 50 years. The thought of having open heart surgery scares me, but I am only 31 and the thought of having a procedure done that they don't know the long term effects scares me even more. What are others thoughts of an ablation for someone of my age?

I have some questions for those of you who have been to the Mayo clinic in Rochester. Do they have hotels or housing set up close by for family members? Can I fly directly to Rochester? It is a 10-12 hour drive from St. Louis to Rochester - can I fly after the procedure or am I better off riding in a car? Any help you can provide would be greatly appreciated. Thanks,

[Robert Hartwell]

Hi Kay,

I think that you will find a wide variety of thoughts on this board about people's experiences with myectomy vs. Ablation. You can use the search feature to easily find them.

In my own mind, I was a bit worried about ablation since there is no long term data. I was also scared about open heart surgery as well. My doctor ruled out ablation as they wanted to remove some calcium deposits which were on my mitral valve. One benefit that you have if you opt for surgery is your age. Your recovery should be relativly quick.

Myectomy being the "gold standard" does not mean that it is better than ablation, just that it is the bar by which new procedures are measured. IMHO, I think that HCM specialists in this country currently lean toward myectomy for younger patients simply because age is in their favor and the long term effects are predictable.

However, when you get to Mayo, be sure to question them alot about both procedures. I don't know much about Mayo but others are sure to chime in. You can either fly or drive after the procedures.

Bob Hartwell

[LynnS]

Hi Kay,

I had my myectomy performed at the Cleveland Clinic last August and at the time was 31 years old as well. I had a very hard time wrapping my brain around the idea of being 31 and having open heart surgery; I was overwhelmed. However, it did turn out to be the right thing for me to do!

Ablation was not considered as an option for me for a number of reasons but mainly due to the long term success known for myectomies. It was explained this way to me - the medical community does not have the ability to measure the success of ablations over the long term in the same manner as they do myectomies - not yet at least. So ablations are a great option for obstruction but either procedure has to be matched to the patient accordingly.

I understand that the possibility of a myectomy can be a lot to face but Mayo is such a wonderful place from all that I've heard! I feel confident that you will find the knowledge and skill of those who work with you there to be incredible and reassuring in a way that nothing else could ever be!

Keep us posted -
All the best,
Lynn

[Lisa Salberg]

Mayo and Cleveland are the 2 best centers in the USA for a myectomy. You are in good hands a the Mayo... There are others her on the board who can share there stories with you. Linda Price knows a great deal about the travel and hotel issues in the Mayo area... and Lynn S. and Judy Reid and Elizabeth S. Can offer some 1st had advice from the 30something Myectomy womans club! I know there are some others out there as well...
The staff at Mayo can also help you with the travel questions.
Best wishes!
Lisa

[Linda]

Kay, Rochester is just jammed-packed full of wonderful people. They are very used to people from out of town, and will go out of their way to help you. Call your scheduling person or information and ask for suggestions. There are many hotels/motels within walking distance and most have shuttles. The hospital system has a shuttle service. Many motels have efficiencies, if you have surgery, you will want a means of preparing meals for your special diet immediately after the surgery. You may have some temporary salt restrictions, as even HCM'ers can retain fluid immediately after surgery - not always, but maybe. As for treatment options, don't be afraid to ask questions till you are sure you have all the info you need to make your decisions. The Rochester Airport is the easiest airport you will ever navigate. It's very small and convenient and the shuttle to the airport is reliable and convenient, unless it's New Year's Day . We found the cabs to be a real pain, very independent, no competition. Maybe we just hit bad times(all 3 times we were there). Maybe we just had bad luck with them, but then some stranger will jump up and say, "I'll take you to the airport", and someone else will say, "No, I'll take them" , and it all works out. Just don't cut yourself short on time for cabs. As for the air travel, a few yrs ago, Northwest offered discounts for Mayo patients. The # at that time was 1-800-328-1111. I don't know if it still works or if you would even use NW. We were traveling from MD, winter weather, so driving really wasn't an option. Best wishes, hope this helps. Linda

[Sarah]

Mayo

Hi,

I live in Chicago and found that the Mayo web site: (mayoclinic.org/rochester/) is fantastic. The box in the top right corner has travel and lodging info as well as what to expect when you go and all the information you will need. THey also welcome calls and are super-friendly.

I did find that you need to book your flight as far ahead as possible. You may even find that buying a ticket round trip to Minneapolis and a round trip from Minneapolis to Rochester is cheaper than buying round trip to Rochester (and make sure you buy a ticket to Rochester MN and NOT Rochester NEW YORK ---it has happened!)

I would ask the doctors if you can fly after, but most people can.

If the Mayo thought an ablation would be better for you, they would say so. They don't pull any punches and they strive to be perfect.

My experience there was the best. Feel free to e-mail me any questions.

Take care,

S

[Judy Reid]

Hi Kay,

I had a myectomy in 1999 at age 33. The alcohol ablation was also recommended to me by local doctors, but that opinion was not supported by a hcm specialist (Dr. Lever at CCF). I was given the same reasons that you posted (to have myectomy instead of the ablation) and I am very pleased with the results of the myectomy. I was worried about the surgery before I had it done and I thought it would be easier than it was, but everything worked out great and I have a great quality of life now.

I was the most nervous about my children growing up without their mother. That has always been my worst fear anyway, but I knew that I couldn't go on the way things were and I felt like I had finally found a doctor that understood what I was going through with my hcm. I trusted that the surgery would be the best thing for me and I feel that I made the right decision.

I have heard of people taking both cars and/or planes home after their surgery. I rode in a car about 4 hours and I thought it was a pretty long ride. Make sure you have enough pain medicine to get you home either way.

I have heard great things about Mayo. My experience is with Cleveland, but there are others out there that have had surgery at Mayo. My husband and parents found a hotel on the Internet about 20mins. from the hospital where they stayed after my surgery. Last time I went up was in January, so we stayed at the hotel at the hospital. I didn't want to chance a snow storm this time of year.

Let me know if you have other questions. If phone is easier for you, we can talk that way too.

Good Luck,
Judy

[Guest]

Myectomy and mail

Thanks to everyone for your help and opinions. I feel confident that a myectomy is the way to go for me. I will keep you informed how things progress. Thanks again.