Surgery??

[sorenson24]

I am a 24 year-old diagnosed with HCM two years ago. I suffered a cardiac arrest while playing intramural basketball during my senior year of college. I suffered anoxic brain damage and now have a pacemaker. I am now facing the decision whether to have a myectomy or not.

I am literally just leaving the Mayo clinic where I received feedback. Surgery is not fully necessary but, it may improve my symptoms. So, I am facing a difficult decision and I am hoping those who have gone through the surgery may provide me their insight.

I have always thought my "symptoms" were normal so I don't really know what normal is. I get out of breath if I climb stairs quickly. I have shortness or breath and a tight chest one-two blocks into a fast walk, when I attempt to jog, or hike. Recently my vision has gone white with certain exertion and, when I stand-up from sitting my vision frequently goes black. I have never passed out except for my arrest.

The doctor suggested that surgery may decrease symptoms when I reach my forties and may make pregnancy easier (if I decide to have kids). But, it is my decision!

I am hoping to hear: What other's have experienced with recovery? If people experience enduring chest pain or nerve damage where the chest is "opened"? Thoughts on improvement of symptoms post-surgery. How is scarring? Any insight on things I should consider in making this decision?! Thank you so much!!

[Reenie]

Re: Surgery??

Welcome to the HCMA. If you search in the forum about septal reduction you will find a wealth of information of others' experiences with surgery, their expectations, their recoveries, etc. I can tell you that many people didn't know that their symptoms weren't what most would consider normal, it was only normal for them. It sounds like you fall into that category. I'm glad you've been to Mayo. You have a lot to think about, but rest assured that if you decide to go with the myectomy you will be in good hands there.

[gfox42]

Re: Surgery??

Welcome!

I know the feeling: "What, that's a symptom? But my heart's always done that!" But . . . no, what you described are definitely symptoms. I had a myectomy 5 years ago and am very glad I did. I have no shortness of breath, no chest pain, and it's very rare that I feel light-headed.

A myectomy isn't fun -- but I'd do it again if I needed to.

Gordon

[Moosedreams]

Re: Surgery??

Ditto on Gordon's wise comments. Got my life back and glad I did it.

Toodle pip... Moosedreams

[Christy]

Re: Surgery??

Hi Tori, I had a myectomy on 2/16 and I think it was one of the best decision I have ever made. My symptoms -- SOB, chestpain, lighheadedness-- are virtually gone. Like you, I got to the point where I could not go upstairs or walk a block without having symptoms. Since the myectomy, I can catch my breath and have not had any chest pain. The recovery has had a few bumps, but really, it isn't bad at all. At the beginning you may have some chest pain (some people don't have much -- some have more) -- the worst is when you cough or sneeze. My scar is coming along nicely -- no problems there -- it looks like one long cat scratch. I've been putting Palmer's skin therapy oil on it every night and it really does look like it is fading. I would totally do it again. ~Christy

[mbcube]

Re: Surgery??

Tori - I was one of those like you that that had "low numbers" but big symptoms. If you looked at the chart, you'd think I was ok - Borderline, but ok. But if you walked in my shoes, had the family history I did - well then you'd lean towards surgery. Its not an easy step - I grant you that and I applaud that you are doing your research, asking questions and taking a proactive decision in your care.
May I suggest attending the HCMA Conference in June? You'd meet lots of experts, many pre and post surgery patients, and learn a ton of info. Your lucky in that you have no immediate need for action so do take this time to learn more about your options and your condition.

[sorenson24]

Re: Surgery??

Thank you all for your responses!

A few questions that have come to mind:
What were your symptoms like when you were in your twenties?
Do you feel your symptoms got worse with time?
If you could/would have had the myectomy when you were younger would you?

I work out every day, just can't push myself as hard as I would like to, but, I'm still VERY active and able to ride the exercise bike and jog 1-2 blocks, walk 1-2, jog 1-2...
My septum is 22mm.

I have the time and good health insurance now and the doctor suggests that pregnancy (if I so decide) may be easier. When I left Mayo they tentatively scheduled surgery for the 1st of June with Dr. Schaff.

Thank you again for your thoughtful replies, I appreciate your insight!!

[CeeBee]

Re: Surgery??

It sounds like you're in great shape -- relatively speaking for having HCM, that is -- and my own opinion (non-professional, but once a doc friend told me this, it made total sense) is that the healthier you are going INTO a major surgery, the faster and better your recovery will be. Your youth and strength and good attitude & workouts will really pay off for you, I think, in terms of recovery.

To me, you seem to be in the unique position of being able to have a surgery that will keep you from experiencing the "slow slide" of middle-aged HCM -- increasing symptoms and a decreasing sense of what's "normal," at least for some of us. Instead, you could be returned to having a heart capacity that means all your working out will make a huge difference. Not that it's wasted now! exercise never is. But imagine what your heart could do with all that effort if it's normal! (or ALMOST normal!) (you know what I mean -- you still have HCM, but not the symptoms you have now)

For me, I couldn't have faced the surgery earlier -- I was too chicken and not "desperate" enough -- but looking back, I regret that I spent so much time at 50% energy (or 30%, 60%, it varied, whatever). So, while I'd never tell anyone to have the surgery or not, I wish I'd had the nerve myself. It sounds as if having surgery could open a lot of options for your future. I wish you the best!

[gfox42]

Re: Surgery??

I think the docs would agree with CeeBee: the better shape you're in, the better you'll handle surgery.

As for me -- I wasn't diagnosed with HCM until I was 47. I would have said that I had no symptoms in my 20s. But looking back, I certainly did -- I had one episode of syncope, and never had quite the endurance I thought I should have. After I was diagnosed, most of my symptoms were pretty mild until 7 years later, when I started to have pretty severe symptoms -- lots of SOB, syncope, some chest pain -- and it turned out that I'd become severely obstructed. That's when I had my myectomy. In my case, I don't think a myectomy much earlier would have been justified, but then I wasn't very obstructed earlier.

Gordon

[dancephoto]

Re: Surgery??

Shoot: I had a long, brilliantly written response to your question that disappeared when the system logged me out while writing it.

(Did I mention it was long?)

Long story short...

In my twenties and thirties: I was in great shape, had a very high level of fitness, and lots of stamina. (I was a professional dancer -- Alberta Ballet, Ohio Ballet, among others.)

At 39: retired from dance, returning to photography full time.

In my late forties (Spring 2009, at 48 to be precise): fairly sudden lack of stamina, much shortness of breath.

June 1st, 2009: Mayo Clinic, Dr. Schaff -- extended septal myectomy, with a bypass thrown in. (Yes: June 1st, and yes: Dr. Schaff.)

In my early fifties (now, to be precise): ICD, over 90% paced, but in good shape, fitness above average for my age, stamina above average for my age.

I can keep up with my kids (I have a young family: 9, 5, and 3) I can play with them, wrestle with them, piggyback them up and down and all around.

I'm a photographer, and have no trouble shooting a gruelling schedule on the weekends: cheer and dance competitions, which often involve 17 hour shooting days and little sleep, and triathlons (I shoot for Ironman), which involve 17 hour shooting days and little sleep.

I honestly feel wonderful, and -- if it weren't for the bump near my clavicle, and the cool scar down my sternum -- would forget there is something that's not "normal" about my heart. Most people place me in my late thirties or early forties. If I tell them I'm three years out of Open Heart Surgery, and have an ICD, they think I'm pulling their leg.

Long story short (for real, this time!):

If I had it to do over again, I would.

In a hearbeat.

[mbcube]

Re: Surgery??

I was fairly active & but never had much ability to run (and in my 20s I ran 5, 10K). Noticed a decline in my 30s but assumed old age. In my forties became a gym rat & did heavy weight-training & 60 minute cardio 5 days a week. Then it happened. I DX at 48, and very soon noticed a HUGE decline (or was it the meds or being hyper aware of my condition?). I did have surgery @ 50 and feel very much like I did early-mid forties. Not perfect, but way better.
Do it again? yeah.