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.

Liked by debcrawford

@PatMattos

Hi, Barbara,
I have HCM also, diagnosed following a cardiac arrest in 2010. You are most definately not alone. I am a patient at Mayo and most impressed by their knowledge. The questions Cyna suggested are excellent-it is important to know that your heart is being trusted to people who have the expertise to successfully do the surgery if needed. If you can’t fly, would train be an option? It’s slow and a bit of a pain (though I LOVE trains) but it might be possible. Please let us know and know that we are here to support you.

Jump to this post

Taking a train is definitely an option. I’m glad you suggested that. Sometimes it’s hard to think past the next dr apt. lol and ty for caring.

Liked by PatMattos

Just think about going to sleep and everything will be fine when you wake up. I had to keep telling myself I will be fine. I don’t think Mayo has lost anyone with the surgery for many many years…if anything goes wrong they can fix it. For example ( I hope it doesn’t scare you even more) I was on the heart lung machine and they fixed my heart…when they take you off and get your heart going again ( you won’t feel anything or know whats going on because you are sound asleep) My heart was kicking back a lot of blood…it was bleeding somewhere….so they put me back on the heart lung machine and took out all the sutures looking for the bleed…it was the first suture…it wasn’t holding right so they sewed me back up again, took me off the heart lung machine. Everything works just fine. They keep you in a cardiac ICU and you are on a ventilator…which you have no memory of either…I actually have no memory of most of the 6 days I was in the hospital. It doesn’t hurt to get the pacer wires pulled out and the 2 chest tubes…it’s odd that it doesn’t hurt…but it didn’t . I have no pain now, heart is working great and happy I had it done. Are you having Dr Schaff as your surgeon? -Lynn

Don’t know anything until I talk to the second opinion DR. in Eugene or, if he says he agrees I need the surgery then I will contact a surgeon.

@PatMattos

Hi, Barbara,
I have HCM also, diagnosed following a cardiac arrest in 2010. You are most definately not alone. I am a patient at Mayo and most impressed by their knowledge. The questions Cyna suggested are excellent-it is important to know that your heart is being trusted to people who have the expertise to successfully do the surgery if needed. If you can’t fly, would train be an option? It’s slow and a bit of a pain (though I LOVE trains) but it might be possible. Please let us know and know that we are here to support you.

Jump to this post

You are most welcome. We need to be here for each other!

Hello everyone, Well I had my new Cardiologist appointment and it went well. Dr. Matthew Trojan is now my new Cardiologist. He is Great. Were going to try and put off the surgery for as long as we can since the medicine is working for me for the most part. I can also exercise at PeaceHealth hospital in Springfield, I will have monitor’s on me, and hopefully I will get healthier when the time comes for me to need surgery, he also said he will send me to Mayo Clinic because PeaceHealth doesn’t have the experience needed. I really like this Doctor he is very through and I understand more now. I don’t know how long this medicine will work for me. As it stands now the medicine works about 80% of the time and I still run out of air and get dizzy, I guess I just have to take it easy till then. 🙂

Liked by debcrawford

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!

Wonderful 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.

Thank you @cynaburst! That makes sense.

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?

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.

@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)

Jump to this post

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.

@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?

Jump to this post

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.

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.

Please login or register to post a reply.