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tkterrell
@tkterrell

Posts: 6
Joined: Apr 09, 2017

Where should I go for further treatment after diagnosis of HOCM?

Posted by @tkterrell, Nov 24, 2017

Hello, this question may have been asked and answered, but I didn’t see it. I live in Mississippi and was diagnosed in Feb ‘17 with HOCM. My local family doctor has suggested I see a specialist as a proactive measure. I have had an echo and electocardiogram from our local cardiologist. Where would you suggest I go? I follow another group that list the HCM Centers of Excellence but I just don’t know where to begin. Any input is appreciated.

REPLY

I’m glad that somone has HOCM. Most have been just HCM. Not that I’m glad but wanted to know if they told u, u might have sudden death with HOCM. My hubby had 2 48 hr monitors. He’s OK but please check. They also told us it was very highly lnherited. I live in KY and we go to a Dr. Girly. He’s very good. He has his controlled with a Bata Blocker for the time being. Probably will have the alcohol abration.

I’m also on a low-dose beta blocker. I was told I’m low risk for sudden death but to stay away from weightlifting or CrossFit for sure. I have moderate to severe thickening. Hope all goes well for your husband.

Well, we are admittedly biased here since this is a Mayo Clinic support group! 🙂

Mayo Clinic in Rochester, MN has one of the top HCM Specialty clinics in the world. I personally travel there from Los Angeles to see the doctors there. I believe that wherever you choose will likely involve some traveling. Emory in Atlanta is a possibility if you can’t travel to Mayo.

BTW, kudos to your local doc for making that suggestion. Most doctors would not do that. It shows that he or she really wants the best for you and is aware that not all doctors are equal, esp. when it comes to a disease like HCM which is not well understood among the general medical community.

Where in Mississippi are you? I am from New Orleans originally.

@cynaburst

Well, we are admittedly biased here since this is a Mayo Clinic support group! 🙂

Mayo Clinic in Rochester, MN has one of the top HCM Specialty clinics in the world. I personally travel there from Los Angeles to see the doctors there. I believe that wherever you choose will likely involve some traveling. Emory in Atlanta is a possibility if you can’t travel to Mayo.

BTW, kudos to your local doc for making that suggestion. Most doctors would not do that. It shows that he or she really wants the best for you and is aware that not all doctors are equal, esp. when it comes to a disease like HCM which is not well understood among the general medical community.

Where in Mississippi are you? I am from New Orleans originally.

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Thanks for your reply! I’m very thankful for my local dr. He is the one who found the “significant” heart murmur when he saw me for upper respiratory infection. The cardiologist I see is good, but like my dr said, “you need someone who specializes in this. It’s your life.” The problem with Atlanta is there is only 1 doctor listed and I’ve heard the wait is 2 monnths or more. I’m from Mccomb, which is north of NOLA about 110 miles. We love to visit NOLA though! What do I do to get an appt with the Mayo Clinic?

Liked by gwenm

@cynaburst

Well, we are admittedly biased here since this is a Mayo Clinic support group! 🙂

Mayo Clinic in Rochester, MN has one of the top HCM Specialty clinics in the world. I personally travel there from Los Angeles to see the doctors there. I believe that wherever you choose will likely involve some traveling. Emory in Atlanta is a possibility if you can’t travel to Mayo.

BTW, kudos to your local doc for making that suggestion. Most doctors would not do that. It shows that he or she really wants the best for you and is aware that not all doctors are equal, esp. when it comes to a disease like HCM which is not well understood among the general medical community.

Where in Mississippi are you? I am from New Orleans originally.

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Hi @tkterrell,

The quickest way to start your appointment process with Mayo Clinic is to click on this link, http://mayocl.in/1mtmR63. That will take you to appointment information and some phone numbers. The appointment coordinators on the phone will be able to answer all of your questions and help guide you through the process. If you are accepted, be sure to ask about Concierge Services, which is a service that can help with travel plans, hotel information, local restaurants and much more.

@cynaburst

Well, we are admittedly biased here since this is a Mayo Clinic support group! 🙂

Mayo Clinic in Rochester, MN has one of the top HCM Specialty clinics in the world. I personally travel there from Los Angeles to see the doctors there. I believe that wherever you choose will likely involve some traveling. Emory in Atlanta is a possibility if you can’t travel to Mayo.

BTW, kudos to your local doc for making that suggestion. Most doctors would not do that. It shows that he or she really wants the best for you and is aware that not all doctors are equal, esp. when it comes to a disease like HCM which is not well understood among the general medical community.

Where in Mississippi are you? I am from New Orleans originally.

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It seems that Justin has put you on the right path. There are a few docs at Mayo who specialize in HCM who can help you. They are all fantastic. BTW, I love your doctor. I wish there were more like him! Let us know what happens. Also, if you are on Facebook, I moderate a group there called Mayo Clinic HCM Patients which you should feel free to join. You can meet others there who are on the same path.

Wishing you the best.

@choochoo

I’m glad that somone has HOCM. Most have been just HCM. Not that I’m glad but wanted to know if they told u, u might have sudden death with HOCM. My hubby had 2 48 hr monitors. He’s OK but please check. They also told us it was very highly lnherited. I live in KY and we go to a Dr. Girly. He’s very good. He has his controlled with a Bata Blocker for the time being. Probably will have the alcohol abration.

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Hi @choochoo

Thank you so much for sharing your insights with @tkterrell.
You may also wish to view this discussion – “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/ where you will meet @debcrawford @daisygirl @quinn @lina2017 @lynnkay1956 and others who have talked about HOCM.

@choochoo, may I ask if you would share a few details, especially about your concern regarding sudden cardiac death?

@choochoo

I’m glad that somone has HOCM. Most have been just HCM. Not that I’m glad but wanted to know if they told u, u might have sudden death with HOCM. My hubby had 2 48 hr monitors. He’s OK but please check. They also told us it was very highly lnherited. I live in KY and we go to a Dr. Girly. He’s very good. He has his controlled with a Bata Blocker for the time being. Probably will have the alcohol abration.

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@choochoo – Before your husband chooses to have an alcohol ablation, you should be sure that he is evaluated at a place that has a team which can also perform myectomy, if that is indicated. Alcohol ablation is a procedure that is not appropriate for everyone, and in fact, may actually increase the risk of needing a pacemaker or ICD or suffering a SCA. Additionally, the individual’s anatomy may not lend itself to alcohol ablation. If possible, it is always best to seek out an opinion at a place like Mayo which does both and has a multi-disciplinary team to evaluate each person.

Also, you should know that the current thinking is that most with HCM are obstructed. 70% of HCM patients have either resting obstruction or latent obstruction during exercise.

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