Myectomy Needed

From what I've learned and I'm newly diagnosed and new to HCM treatments, there are Centers of Excellence (CEOS) in the U.S. per info from 4HCMA.org (which I joined). Of course, Mayo-Rochester MN is fantastic but there are other CEOs that are also excellent, e.g. Cleveland Clinics, etc. You need to consider distance, cost for hotels and travel, number of procedures by cardiac surgeons, what your insurance will cover, testimonials from other patients, (esp. those who have had the surgery) etc. This is a good start and would I would be asking if surgery or other treatment is needed.

I have not had the procedure scheduled for june
Couple things to consider
#1 your over all health? Are yku healthy enough to have myectomy.
#2 your fitness? Are yku extremely active and fit?
#3 your age +fitness level.

Each case is different and a mayo cardiologist may have a different course of action given the above.

Im 57 very active intense mountain biking hunting big game in high elevation

Mayo cardiologist said because of my ykuth and my intense workouts myectomy would be best course, put me on camzyos to get me feeling better for a few months while awaiting surgery.
He said if i was in poor health or in my 70’s alcohol abation would be last course of action

So consider these things and consider the source where you get your information!
My local cardiologist suggested alcohol abation 1st with septal myectomy being the least favored!

Hope you get the right treatment thats right for you!

I had my septal myectomy exactly one year ago today at Mayo. I live in NC, so I certainly had to travel a ways to get the surgery. I could not be more pleased with the outcome. The improvements I have seen (too many to list here) have exceeded my expectations. In weighing out factors there are certainly practical considerations such as insurance coverage, family support, travel, etc but I cannot emphasize enough importance of going to a high volume center of excellence. From all the research I did, outcomes are consistently better for myectomy at high volume centers. We live fairly close to Duke University, which is a very respectable medical institution, but they don't do nearly as many myectomies as Mayo. When going to a center of excellence such as Mayo, you are getting not only the best surgeons, but an expert team who routinely did this type of surgery.
Fortunately, my local cardiologist trained at Mayo and she was able to steer me toward an excellent cardiologist and surgeon.

I was fortunate to have a very supportive wife who helped me through the recovery and 2 of our 3 children were able to fly out and spend the week. It would have been nice to have perhaps a few more visitors, but honestly in looking back not sure I would have wanted a lot of visitors in those first few days of recovery. i would certainly do some research to see what kind of volume they do there (Boulder) as well as outcome data. Best of luck in your decision!

I love that you shared your wonderful outcome and that your improvements were "too many to list here."
Being part of a group like this is so beneficial to those who have not gone where we, the septal myectomy people have. I am so encouraged when I see how our little group is so willing to reach out and share their own story with others.
We can share our own unique experiences and offer support that nobody else could and hopefully put other folks facing this at a little more at ease and enlightened.
Heck...even members like @gangcarotid1, who is not part of HCM/HOCM was able to chime in about their extensive kidney surgery and offer advice. Thank you for that, @gangcarotid1 .

It seems major surgery, open heart or otherwise, involves much of the same mental preparation in addition to the difficulties of travel post op for some.

I have learned many things here on Mayo Connect, and I continue to marvel at the strength, humbleness, grace, kindness and openness of our group and how we stand ready to assist each other.
Thank you for sharing how you are doing @bwburchette, and helping others on their journey.

For all the reasons you suggested and my cardiologists prodding- I will go to the Mayo- how long were you actually in the hospital and how long did you stay in the area? How long was the recovery?

Thank you

First of all, you will be in excellent hands at Mayo! At the bottom of all the fears and worry (you are not alone in that state of mind), is the knowledge that you will be cared for by the best in the field. Now, everyone is different, the entire experience will be scheduled for your particular needs. I had 2 days of preliminary tests and interviews (Tuesday and Wednesday), surgery on Thursday, discharge later on Tuesday (5 nights as a patient), and we drove home to upstate eastern NY Wednesday morning arriving early evening on Thursday. I was very comfortable, no pain, just slower than normal movements and care on how I maneuvered my body. We had walking tours of just about every rest area between western Wisconsin and home (if you can borrow a walker, it will save the expense of purchasing one). Many others stayed in Rochester for a few days, it all depends on how you feel and the discharge plan. The recovery takes time, you may be assigned to cardio rehab. I hope you will be as amazed as many of us were at how well you feel and at the things you are able to again in due time.

I was in the hospital for 5 days. Had my surgery on a Wednesday and discharged on Monday. Fortunately, had no postoperative complications. We ended up staying an additional 5 days in Rochester before flying home. We stayed at the Berkman Apartments- across the street from St Mary's Hospital. They informed us that they reserve about 80 units for patients from St Marys. Our 2 bedroom apartment was perfect for our needs and allowed my wife a good place to rest at night. They informed us we could stay as long as we liked as long as we kept them in the loop regarding anticipated departure date.

Regarding recovery, it depends how you define recovery. Although I had fairly pronounced fatigue for a few weeks, I can honestly say that I saw some day to day progress from the beginning. You take a few steps postop day 1 and then progress daily from there. By one week from surgery I was walking a total of 2 miles per day- divided over several relatively short walks.
Over time, I reduced the number of walks per day but increased the distance. I was advised not to return to work for 8 weeks. No driving for one month . No lifting over 10 pounds for 2 months. Coughing cause some pain for several weeks and sneezing- avoid at all costs!. I am finally able to sneeze one year our without having much pain.

Don't get discouraged during early recovery. There will be some fatigue and it will not be easy, but know that you will get stronger over time. Do everything they advise you to do. walk and then walk some more. If possible, get enrolled in a cardiac rehab program. I feel so blessed . I am nearing my 62nd birthday and can do things now that I could not do in my late 40s! I have no regrets whatsoever from having gone through this and I hope you will look back with the same perspective soon!

Thank you for your kind comments. Prior to finding this support group on Mayo Connect, I felt a bit like being on an island- alone! It has been very reassuring to know that others have faced the same issues. i did pick up lots of useful information through Mayo Connect in preparation for my surgery last year. Your posts have been very informative and encouraging! We are very fortunate to have you as a mentor for this group!

Thank you for sharing your experience, strength and hope. I will look into those apartments because they may be cheaper than an Airbnb. In 2018 I was in a car accident and broke my sternum. Sneezing was worse than labor pains. This site and the people on it are so generous and I am so grateful.

Thank you so much for your sharing and your encouragement. I hope to do the same. You are inspiring!