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Diagnosed with HOCM last year. May be time for surgery
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.
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Barbara - So happy to hear that you are now on the right track and you have a good doctor to treat you near home, and that if need be, he will refer you to Mayo where they are experts in this surgery. That is exactly the way that it should work. Bravo!
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1 ReactionWonderful news Barbara! It must be such a relief to have a doctor who you trust and can partner with in your health.
A silly question coming from someone who doesn't have HOCM - why wait to have surgery? Is it because surgery is risky? Or is it to prepare for surgery, as you said get stronger?
Colleen - Usually surgery in HCM is elective, and is done only after it has been determined that the patient is not responding well to meds. It is basically a surgery to improve symptoms although it does also work to relieve stress on the heart. Nevertheless, it is an invasive procedure, so it is done only after it is determined to be necessary.
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2 ReactionsThank you @cynaburst! That makes sense.
<p>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?</p>
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?
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.
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.
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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2 ReactionsHi @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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