Extended Septal Myectomy at Mayo

[Vital]

Hello everybody. I am 52 years old male diagnosed with HOCM 1.5 years ago. I noticed rapid worsening my condition for this time.
I am considering this thread as my obligation to amazing community on this forum and to future fellow HCMers a like. I used the shared experiences of many of you, which allowed to make right decision for my HOCM condition. So I am 2 weeks now after extended septal myectomy performed by Dr. Schaff at Mayo Clinic. Before the surgery I underwent extensive 3 days evaluation at the same clinic and had consultation with Dr. Ommen. My hospital stay could be as short as 2 days after the op (they started talking about discharge), but sudden defibrillation on 2d day postponed it to the 4th day, after they stabilized everything and made sure I am safe. According to Dr. this happens in 30-40% cases and in principal shouldn't lead to permanent arrhythmia, otherwise I would be implanted pacer. It turns so out that I fall to 95% of lucky ones who benefit after myectomy. On day of my discharge I made a couple trips to the parks with my family and we had two meals in different restraints during which I started noticing that SOB, light-headiness, chest pain are gone. Of course I didn't push myself yet, but I already saw the differences. On day 5 we drove 5 hours back home to Illinois. While I took recommended precaution and didn't drive myself, nevertheless I felt that I was able to do so (I was on tylenol only and didn't take pain killer narcotics). And at home when next day after return I started moderate pace and time treadmill walk it was already higher and longer than before ESM: 3.6 vs 3.2 mil/h and 40 minutes vs 15 mintes of total time. I started driving home on day 10. Planning go to cardio rehab, - but this is probably overkill. So far so good!

[JillC]

Welcome Vital! So glad to hear about your success and thank you for sharing. It was 3 1/2 years ago that the wonderful moderators on this forum steered me to Mayo Clinic for a second opinion and a redo extended myectomy. With extremely good results. I too saw Dr. Steve Ommen and Surgeon was Dr. Dearani who was trained by Dr.Schaff. ..... Keep up the slow gradual pace ..... Dr. Ommen warned me that sometimes right after surgery there is such a positive effect that we get over exuberant or experience a let down if we feel fatigued or get arrhythmias later on.....The surgery has done its job, but we still have HCM and we still had MAJOR surgery......Our bodies take a while to recover. So take your time.
By the way, I lived in the Windy City for 40 years......I miss the lake but not the winters!

[Vital]

Jill, thank you. Your story along with the stories of Lisa, Cynaburst, gfox42, mbcube, Redteamer, angusjcampbell, ninelives, Jordan Z. and many many others were very very inspiring. I was calm as **** when they gave me sleeping gas, which characterized the level of my trust in them. All words about staff & service in Mayo and I believe in other big COEs were true: very kind and professional. The nurse service is really can be thought as a family member's one. As for windy city, when I come here 16 years ago I was not so impressed. But my current perception of it changes. I love it. It has seasons which doesn't allow you to get bored: beaches in GREEN summers, skis in White winters & with very short periods of fall and springs in between.

[silkee27]

Isn't it Good to have your Septal Myectomy in the rear view mirror. Everyday you'll just keep feeling better from the sternotomy. Nicely Done !!!!!!!!!

[Vital]

Silkee27, definitely having the surgery behind give much better feelings both physical and emotional. But as I pointed above the people's real stories on this forum make you more comfortable to face the procedure. That's why I decided to speak out for my case. Before recently I was just a passive reader. You know that good outcome probabilities gonna be very high as long as you going to have it in one of COEs by one of the Surgeon who did it a lot. We are lucky in US that there are few centers that succeeded with myectomy and consider it more beneficial for otherwise healthy and younger patients in contrast to alcohol ablation. The situation looks a little bit different in Europe where the preferences are made to the latter.

[gfox42]

It's great to hear you're doing so well. Hope you continue to have an uneventful recovery, but don't overdo it: slow and steady wins the race!
Gordon

[Vital]

Gordon, thank you for note. Sure thing - there is no reason for speedup.

[Vital]

One year has flied by after my myectomy. And I like the word fly since it fits the case literally and else... After sternum healed the condition returned back to "healthy", never felt SOB or dizziness since...
It allowed resuming my passion ultralight flying. Along the way, though made few life changes to reduce speed of recurrence: overcome stress (tough one), keep eye on what putting in (more nutrients, love Dr.Berg channel on YouTube), reduced alcohol consumption (guys it is +10mm BP the morning after regardless of dose you had!!!), keep ambient comfortably warm (the AC lover keep in mind that BP goes up the cooler temperature). Did i make the chances earlier, who knows, might not have the HOCM at all. Ye-yeah, I know - genetics Bla-Bla-Bla. People tend to blame anything else but not their choices.