Diagnosed with HOCM last year. May be time for surgery

Posted by barbararickard @barbararickard, Feb 9, 2016

Hello, I was diagnosed with HOCM last year. I have been told I may be approaching the time for surgery. The last MRI showed a 10% worsening in valve pressure. I am in the process of getting a second opinion. I have pain and dizziness and breathing is hard. I am scared. I worry if I have to have surgery something will happen. I know I shouldn’t but I do. I’ve had problems with my heart since I was a kid I am 54 now. I feel alone with this problem. I put on a brave face for my husband and kids but alone I almost feel defeated. I wonder if there is anybody out there that had this heart disease and if so are they ok and how did it go? Thank you all for reading this and I hope everyone who is sick to get well soon.

I am diagnonised with asymmetric septal hypertrophy with IVSD 1.6 ,no blocks, please let me know under what circumstances i should go for surgery?

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Hi @Komalin, welcome to Connect. I moved your message to this discussion thread to introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @FrancineFafard @lepadelford and @barbararickard. I think you’ll appreciate reading the messages in this thread.

How long have you had asymmetric septal hypertrophy (also called hypertrophic cardiomyopathy)? How are you managing it now?

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Not sure how long ,i just went for cardiac check up and was dishnoised with HCM., started medication Dr did not advise for surgery yet but anxious to know what circumstances will lead to surgery.

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@lynnkay1956

I am 59 and had a septal myectomy and had my aortic stenosis fixed this past December. I watched all the graphic videos I could find on line that showed the surgery…you don’t wanna do that…it scared me to death. My outflow was basically blocked so I needed the surgery…I feel so much better now…but I worried so much before the surgery that I nearly didn’t have it. I was so fearful. Lynn ( I had mine done at Mayo Clinic in Rochester Mn)

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Hi lynnkay, can you tell me what was the total expense at mayo clinic for myectomy? And did you ever faint before getting the surgery done if so how frequently? Please help.

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@Komalin

I am diagnonised with asymmetric septal hypertrophy with IVSD 1.6 ,no blocks, please let me know under what circumstances i should go for surgery?

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Hi @Komalin,

Myectomy surgery is warranted where a patient with HCM has an outflow tract gradient of 30 mm.HG or more. Basically, this means that you have to have the obstructive form of HCM and you have to have symptoms that are not responsive to medications that are commonly used to treat symptoms of HCM like shortness of breath and chest pain. They will always try the medications first to see if they can relieve the symptoms. If that doesn’t work, then surgery can be considered.

The best thing for you to do is to visit a doctor/hospital where they are expert in treating HCM. Mayo Clinic is such a place, but there are others depending on where you live. Any HCM expert would be able to advise whether you are a candidate for surgery or whether there are medications you can try to help your symptoms.

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Hi @Komalin,

I answered your other thread. Surgery is for those who are obstructed and are highly symptomatic. Best advice is to make sure you are being treated by a HCM specialist and then the medications are a trial and error process to relieve symptoms and obstructions.

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I am a 63-year old female diagnosed with hypertrophic obstructive cardiomyopathy. I was diagnosed in 2008 but have always had trouble hiking uphill. My heart pounds so hard the movement is visible under my shirt so I wait, usually several minutes, until the pounding subsides. I am left in the dust while my friends proceed, which I insist they do. I love hiking with friends but have even never managed a 10er vs. the 14ers they enjoy. I am 20 BMI, so not overweight. Except that I used to drink several glasses of wine most days (I stopped a year ago), I take excellent care of myself. No smoking, low fat, red meat free diet, tons of fruits and veges, good sleep. Even so I am treated for low thyroid, depression, and anxiety (family maladies). Osteoporosis also runs throughout my family and I have not been spared. Due to my mood disorder and osteoporosis I need to exercise daily. I love to lift weights (just 40 to 80 pounds), bicycle, kayak, and walk at least a mile outside daily or use a treadmill (rarely beyond 3 speed). Since I last saw my cardiologist a week ago, I’ve been advised to give up all of the above except for slow walking. I hate to whine so much but life without exercise is already bringing me down. I don’t know if I’ll qualify (my symptoms aren’t bad: no fainting, chest pain, shortness of breath, etc.), but I would love to regain the ability to work out (bike, hike, lift a little, walk daily, etc.). I have test appointments at Mayo Clinic in Minnesota late April and am praying for a septal myoectomy, which is the surgery my hometown cardiologist believes I need in order to be active again. Waiting
is tough, but it was the first appt. I could get. Anyone out there think I’ll qualify for myoectomy?

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Hi @quinn, welcome to Connect.
My apologies for the delayed response. Somehow your message slipped by me. I have moved your message to this thread to connect you with others asking similar questions and people how have been there. On this thread you’ll meet @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @lepadelford @barbararickard and others. They are much more qualified to answer your questions than I am.

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@colleenyoung

Hi @quinn, welcome to Connect.
My apologies for the delayed response. Somehow your message slipped by me. I have moved your message to this thread to connect you with others asking similar questions and people how have been there. On this thread you’ll meet @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @lepadelford @barbararickard and others. They are much more qualified to answer your questions than I am.

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Hi @quinn

Welcome to the club that you didn’t want to join! I also have HCM. I had a myectomy at Mayo Clinic almost 10 years ago now, and it was the best thing I ever did for myself.

Actually I wrote a blog about my experiences there, if you would like to read it:

http://www.cynthiassummeradventure.blogspot.com

In order to qualify for a myectomy, you must be obstructed. You did not say whether you are or not. Most people who have myectomy have a pressure gradient of more than 30 mm/HG. In my own case, mine was about 120 mm/HG.

Usually, also they will try medications first to see if they relieve the symptoms. The surgery is primarily used to relieve symptoms — they don’t totally fix the problem: you will still be left with a heart that won’t relax properly.

Let us know if you have any more specific questions, and I will try to help answer them. You will find the docs at Mayo Clinic the best in the world. Very glad that you are on your way there.

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@quinn

I am a 63-year old female diagnosed with hypertrophic obstructive cardiomyopathy. I was diagnosed in 2008 but have always had trouble hiking uphill. My heart pounds so hard the movement is visible under my shirt so I wait, usually several minutes, until the pounding subsides. I am left in the dust while my friends proceed, which I insist they do. I love hiking with friends but have even never managed a 10er vs. the 14ers they enjoy. I am 20 BMI, so not overweight. Except that I used to drink several glasses of wine most days (I stopped a year ago), I take excellent care of myself. No smoking, low fat, red meat free diet, tons of fruits and veges, good sleep. Even so I am treated for low thyroid, depression, and anxiety (family maladies). Osteoporosis also runs throughout my family and I have not been spared. Due to my mood disorder and osteoporosis I need to exercise daily. I love to lift weights (just 40 to 80 pounds), bicycle, kayak, and walk at least a mile outside daily or use a treadmill (rarely beyond 3 speed). Since I last saw my cardiologist a week ago, I’ve been advised to give up all of the above except for slow walking. I hate to whine so much but life without exercise is already bringing me down. I don’t know if I’ll qualify (my symptoms aren’t bad: no fainting, chest pain, shortness of breath, etc.), but I would love to regain the ability to work out (bike, hike, lift a little, walk daily, etc.). I have test appointments at Mayo Clinic in Minnesota late April and am praying for a septal myoectomy, which is the surgery my hometown cardiologist believes I need in order to be active again. Waiting
is tough, but it was the first appt. I could get. Anyone out there think I’ll qualify for myoectomy?

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Hello, @quinn-yes, indeed, welcome to the club no one wants to join. HCM runs rampant in my family with three confirmed cases and I believe my mother died of it. I was diagnosed in 2010 after a cardiac arrest (was told for years I did not have it) I also have always had trouble going uphill or taking stairs. You are going to the right place for that second opinion. It is critical that we be treated at high volume specialty centers such as Mayo. They know what they are doing. This disease is difficult to treat as it behaves differently in each person. A myectomy is recommended when someone is obstructed. I do not have the obstructed form of the disease, so we manage with medication and I have an internal cardiac defibrulator (ICD) Usually lifting weights is not recommended fro people with HCM unless it is 10 lbs or less. I can’t lift any though I used to. I will be 62 later this year. Oh, welcome!!

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This is a very informative podcast I stumbled across that may give you some good info. from several HCM experts.
http://www.myokardia.com/patientsPOD.php

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Hi HCM-ers,
Just jumping in for a check-in. Would love to get an update from your corner of the country (world).

Out my window I see the apricot tree getting ready to blossom. I think I can safely put away the mittens finally. The weather has been encouraging and making it easier to get out and work out. I’ve been sticking to my regimen and exercising 4 times a week and daily walking.

What’s your update?

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