Connect
HCM-ers: Introduce yourself or just say hi
Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.
I invite you to follow the group. Simply click the follow icon 
on the group landing page.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.
Why not start by introducing yourself here?
Like
Helpful
HugInterested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
Connect
I am 2 weeks out from getting a referral to Mayo. How long can I expect to wait for an appointment and then surgery if recommended?
Schaff is a suberb surgeon. His timing on the surgery is down to a science. He doesn't keep you in the heart machine long.
I live in Rochester so my HOCM cardiologist has been talking about it.
That sounds like a lot - How old is he? I'm not clear on your term Arch Repair. Could you provide more details??
Yes, Dr. Said is one of the surgeons at Mayo who performs septal myectomy. He is one of the newer surgeons trained to do the procedure, which is why you see many others who have had Drs. Dearani and Dr. Schaff, but Dr. Said has been trained by both Dearani and Schaff and will do a great job.
-
Like -
Helpful -
Hug
2 ReactionsHi @keyster1976,
At Mayo Clinic, a multidisciplinary team of cardiologists, heart surgeons, heart rhythm specialists, geneticists, nurses and other specialists trained in treating hypertrophic cardiomyopathy collaborate to provide you with the best care possible. This collaborative approach means doctors can often evaluate you and develop an individualized treatment plan within two or three days.
You can learn more about Dr. Sameh Said, here: https://www.mayoclinic.org/biographies/said-sameh-m-m-d-m-b-b-ch/bio-20149338
This webpage about hypertrophic cardiomyopathy care at Mayo Clinic may also interest you, and I hope, help allay your concerns while we wait for other Connect members to share their insights: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208
Have you been seeing a local doctor who has mentioned having a Myectomy? My first visit, I scheduled my surgery as well as I knew I was a candidate. I was hoping for an alternative treatment, but it wasn't in the cards. The surgery group is a bit "detached" from the HCM clinic in that they do other heart surgeries. I've not heard of Dr Said, but I can assure you he's likely very competent. He may even be the main surgeon with Dr D or Dr S observing/assisting. Or pehaps he does the evaluation and his comments/observation is sent to the other known doctors - not sure. This is a question to ask when you are evaluated. Have you looked him up in the Physician biographies? If not here is a link: https://www.mayoclinic.org/biographies/said-sameh-m-m-d-m-b-b-ch/bio-20149338
And yes, the risk is low (at a COE). I've drafted an article "so your having a myectomy" that is based on my 3 visits and myectomy surgery. Essentially its a what to expect, helpful hints (for you and your family), general orientation of the Mayo process. It should be completed soon, and I will post it.
-
Like -
Helpful -
Hug
2 ReactionsI guess the biggest fear is death. But from what I have read the chance of that is very low. I also want to just know if we are going to do the septal myectomy. I have to wait to wait till 4-2 to know. And last everyone is talking about 2 surgeons and that is not who my consult is with does Dr. Said do the septal myectomy as well?
Welcome to Connect, @keyster1976. Thank you so much for sharing your information and your concerns. We have some incredibly informative conversations about septal myectomy on Connect, where fellow HCM-ers have shared their insights and experiences about this procedure. Here are two that you may wish to view:
– What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/
– Diagnosed with HOCM last year. May be time for surgery https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/
@janicepike, thanks so much for your encouraging reply; I'm also tagging @lynnkay1956 @nightlite8 @cynaburst @ronaldpetrovich @vivian88 @mbcube @lamborama @PatMattos @wintergirl8 @Sensation @lepadelford; many of them (if not all) have had surgery, some recently and some a while ago.
@keyster1976, what concerns you the most about the procedure?
Hii I'm from India ..my son was diagnosed with HCM in 2011.. recently he had his 3 rd heart surgery for Arch repair and SAM resection at Kokilaben hospital Mumbai.if u want any other information plz let m know.
-
Like -
Helpful -
Hug
1 Reaction