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barbararickard
@barbararickard

Posts: 8
Joined: Feb 09, 2016

Diagnosed with HOCM last year. May be time for surgery

Posted by @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

REPLY

Hi @barbararickard
Welcome to Connect. I’m glad you found us. You are definitely not alone. We have a great group of people here who also have hypertrophic cardiomyopathy (HCM or HCOM).

Let me introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @rosebud @fishinglady to name a few. Many of them (if not all) have had surgery, some recently and some a while ago.

Cynthia, Ron, Lynn, Pat and company can you share how surgery went for you and help answer some of @barbararickard‘s questions?

Hi Barbara. I have HCM too. But I have never had surgery for it…yet. I also have trouble breathing, I’m breathless a lot of the time specially when I climb even one flight of stairs, and I almost always have chest pain from 1 or 2 flights of stairs. Far as surgery goes I can completely understand your fears, but your Cardiac Doctor has your best interest at heart, and you will be in great hands. And a majority of Cardiac Surgeons have done probably thousands of surgeries. So you have nothing to worry about. And you will feel a lot better after surgery after you recover. I’ve heard many many successful surgeries that were performed on HCM Patients with very positive outcomes. So it will be totally worth it in the long run.

Hi Barbara,

Welcome! You have come to the right place. I also have HCM: it used to be HOCM, before I had a myectomy at Mayo Clinic 10 years ago. It was the best thing I ever did for myself. Myectomy can relieve the symptoms from obstruction so you feel so much better. The one caveat is that it is critical to go to a place that does these surgeries routinely like Mayo Clinic. The surgery is one that is very dependent on the experience of the surgeon, and all surgeons are not created equal.

I wrote a blog about my experiences having surgery at Mayo which you can read to learn more. But I can tell you that you are far from alone, and many of us here are available to answer your questions and reassure you. As I said, I am 10 years out, and still feeling so much better.

My blog is: http://www.cynthiassummeradventure.blogspot.com

Please feel free to ask any questions after reading it.

Yah I agree with Cyna. Not all Surgeons have thousands of Surgeries under their belt. But you can always ask your Surgeon about how many Surgeries he or she has done to give you an idea, and that would probably help you feel more comfortable with your Surgeon’s Capabilities as well.

Hi Barbara, I think your concerns about something happening are normal and every patient has those thoughts before surgery. They are shutting your heart down and putting it on a machine for at least 30 minutes, slightly scary. I had a septal myectomy and a double bypass two months ago today. I’m now back at work full-time, working out 5 days a week and feel better than I have in 20 years. I reached a point where I just felt so bad I opted for the procedure because my quality of life was not where I wanted it. The team at Mayo was unbelievable and every day I improved after surgery. They do so many heart surgeries here, (I also work at Mayo) they have it down and have seen so many scenarios, that they are prepared for anything. I can’t say the first two weeks after surgery was giggles and grins, but two days after surgery, I could tell that my heart was working better. Yes, there was pain, but with proper rehab, you’ll get past that. I’m still a little sore, but functioning really well. I had been following many of the conversations on the HCM Mayo Patients from people who had this procedure, and it’s got a very low complication rate and most people were pleased with their outcomes. To me, it was a life changer and it is working out beautifully.

Thank you all for commenting on my post, I would contact a surgeon at the Mayo clinic but I live in Oregon and I fear traveling would be very hard on me, and flight would be impossible. I have an appointment with a cardiologist on the 25th in Eugene Oregon for the second opinion, and if he agrees with the first opinion then I will locate a surgeon who has a lot of experience in this kind of surgery. What I fear is deciding to have the surgery. I have terrible pain and dizziness and my left arm is sore, some days I can walk out to the barn with not many problems and the next second I cant even walk three steps. My eyes are constantly red and puffy, and sometimes I’m not even crying. My husband is a truck driver and is gone most of the time. We own a farm out in the country, other then my German shepherd I am alone most of the time. I am on Metoprolol 25 mg, they tried me on 50 mg but my bp dropped to low. The medicine is working that it takes my chest pain away for the most part, but this past Sunday and Monday I had pain in my chest all day both days and it frightened me. I tried everything to help the pain, took apple cider vinegar, took a nap. laid on my right side. nothing helped. This morning I feel a little better, not much pain but my left arm is hurting and I’m still dizzy. I worry if I opt to not have the surgery I may have a sudden death heart attack and if I do have it, well From what I hear it’s never good to cut into your heart, you only have one. :/ I am so sorry for rambling on, I thank you all for listening and your feedback.

I can understand how you feel. I live in South Florida and am traveling to the Mayo Clinic in Minnesota in March for a myectomy. I first found Cynthia’s summer adventure googling and reading it was a comfort. Don’t fear the travel the airlines are very accommodating. Check out the HCM site as well. Wishing you the best!

Hi Barbara, I just had surgery in December…the whole concept of surgery scared the crap out of me…how they do it, what they do and recovery…I had to stop myself from thinking about it or I would have scared myself out of doing it…I had HOCM and aortic stenosis…a bad outflow obstruction…I have no problems now..recovering fine…no palpitations, no shortness of breath and no pain…in cardiac rehab and doing regular things again…once again, I have my life back. -Lynn…PS I am also a Stage 4 cancer survivor.

Hi Barbara – When you meet with the doctors next week, make sure you ask them the following:

-what is your outflow tract gradient ? this is the number – in millimeters of mecury or MM/hg) that shows how much your blood flow is obstructed.

-How many myectomies do they do a year?

-How many HCM patients do they see total?

As I said before, it is critical to be treated by a place that sees and has operated on MANY HCM and myectomy patients. This operation, more than many, is so highly dependent on the skill of the surgeon. That is why it is so important to see an experienced surgeon. Some people decide to have the surgery with a local surgeon, only to find out months later that their symptoms have returned because the surgeon did not remove enough muscle. This is not an operation that you want to go through more than once if you don’t have to. Best to have it done the right way the first time!

Barbara,

You are not alone. I am a 44 year old female that was diagnosed with HOCM in November of 2010 and had open heart surgery to replace my mitral valve and a myectomy. I was referred to Stanford Cardiology Clinics as they specialize in this disease. That is where my cardiologist is located as well as the surgeon who did my surgery. I have had such great care and the staff is amazing. If you ever feel alone and want to talk about this disease or just about life in general I would like to be your friend and say reach out to me.

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)

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.

@cynaburst

Hi Barbara – When you meet with the doctors next week, make sure you ask them the following:

-what is your outflow tract gradient ? this is the number – in millimeters of mecury or MM/hg) that shows how much your blood flow is obstructed.

-How many myectomies do they do a year?

-How many HCM patients do they see total?

As I said before, it is critical to be treated by a place that sees and has operated on MANY HCM and myectomy patients. This operation, more than many, is so highly dependent on the skill of the surgeon. That is why it is so important to see an experienced surgeon. Some people decide to have the surgery with a local surgeon, only to find out months later that their symptoms have returned because the surgeon did not remove enough muscle. This is not an operation that you want to go through more than once if you don’t have to. Best to have it done the right way the first time!

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Hi, sorry it’s been awhile since I talked on here, didn’t know I had some more responses… I think I know what you might be talking about, the last time I had an MRI it showed something the dr said was 78 % not sure what that meant but that may be it? That’s kind of been on my mind since then, wonder if that’s bad or not. The year before it was 64%. so don’t know, but I will ask the DR. when I see him on the 25th. Things here have been pretty crazy. A lot of up’s and downs. My emotions have been crazy. Was supposed to go to my sisters bridal shower today but I couldn’t sleep at all last night, maybe 4 hrs and the drive is almost 2 hours long, I have such a hard time sleeping, if I cant sleep my heart feels so much worse, but when I do sleep well it feels better. been crying all day I feel so alone. I have a huge family but I feel like nobody cares. Probably just being stupid and sorry for myself. It dose’nt help that I am alone out in the country. ty so much for the information and I will ask the DR about all that. 🙂 ps went for a walk around the field today, slow going but it seemed to help.

@lepadelford

Barbara,

You are not alone. I am a 44 year old female that was diagnosed with HOCM in November of 2010 and had open heart surgery to replace my mitral valve and a myectomy. I was referred to Stanford Cardiology Clinics as they specialize in this disease. That is where my cardiologist is located as well as the surgeon who did my surgery. I have had such great care and the staff is amazing. If you ever feel alone and want to talk about this disease or just about life in general I would like to be your friend and say reach out to me.

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ty lapadelford, It is so nice to see people out there like me, altho I wouldn’t wish this on anyone. They said I might have to have my mitral valve repaired at the same time they do the myectomy. but I have hope that isn’t the case. Sounds like your feeling better? I am so happy. 🙂 ps you are so young to have had to have the operation already, but from what I hear they say it is better when your younger?

@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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That’s what I did, I read as much info as I could find online, That was the wrong thing to do. scared me for sure.

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