Three years and all's well

[rohrer01]

Spine Time,
I don't know where your post went. Maybe you deleted it. Otherwise I'm just lame. Anyway, YES, night time is horrible when you are trying to fall asleep and your heart is just racing away. It's very annoying, disturbing, scary, whatever all rolled up in one.

Sorry, Jen.
Not meaning to hijack your thread. But since YOU did bring up the heart thing... I guess that's how the conversation got swayed. Best wishes to you!

[JenniferG]

Spine Time,
I don't know where your post went. Maybe you deleted it. Otherwise I'm just lame. Anyway, YES, night time is horrible when you are trying to fall asleep and your heart is just racing away. It's very annoying, disturbing, scary, whatever all rolled up in one.

Sorry, Jen.
Not meaning to hijack your thread. But since YOU did bring up the heart thing... I guess that's how the conversation got swayed. Best wishes to you!

No worries rohrer!

[JenniferG]

Congratulations Jennifer!

Sorry to hear about the heart thing. Aren't there a few choices for beta blockers? Can't they try you on another one?

I have heard that they will put Marfan's kids on beta blockers for life in order to avoid the aortic enlargement (and even ameliorate some that might have already happened). I called into a medical radio show about long term usage of beta blockers as for these kids and they said there is no problem.

Good luck.

Thanks Sharon. Overall, I haven't got much to complain about. Yes, I've tried a few different beta blockers and rohrer has put me on to another one and am awaiting a new appointment with the Cardiologist.

I guess if the kids are ok on beta blockers long term, then as an adult, I should be too.

Rohrer, I was wondering that exact thing, whether there was some sort of relationship between scoliosis and heart abnormalities.

[Pooka1]

the connective tissue class of disorders can make one prone to mitral valve prolapse. It didn't necessarily say you had to have Marfan's, too. I can't cite my source because it was a long time ago, but it would be worth looking up for those of us with scoli. Like I said, I don't remember where I read it, but if you can find a research paper on it, since you're so good at that, I'm sure the rest of us would be more than interested. Otherwise, everyone is responsible for themselves anyway. It just seems, now that someone brought it up, thanks Jennifer, that quite a few scoli's seem to have some heart issues. Fortunately, they seem relatively minor as compared to some of the major, major heart problems.

The heart issues Jenifer has don't seem related to any scoliosis syndrome I have read about. The heart issues in Marfans syndrome are aortic enlargement and some value issues I think. These issues occur outside the syndrome also as you mentioned.

There are many, many connective tissue disorders, only a few of which have been named, that affect many, many body parts. It's complex out there. Too bad it can't be something simple like germ theory. ;-)

[SpineTime]

Spine Time,
I don't know where your post went. Maybe you deleted it. Otherwise I'm just lame. Anyway, YES, night time is horrible when you are trying to fall asleep and your heart is just racing away. It's very annoying, disturbing, scary, whatever all rolled up in one.

Nope, it's still there somewhere. I didn't delete it. I also notice palpitations much more if I've eaten a heavy meal. It's a strange sensation. I've never had my heart rate go as fast as you've experienced though. That's got to be terrifying!

On a different subject, I'm going out of town with my husband for a few days to celebrate our 20th anniversary. We're driving, and I hope I don't regret deciding to try a long drive with my back in the shape it's in. We'll see. I might not get a chance to check in here again until I get back home next week, so take care, everyone!

Lisa

[rohrer01]

Nope, it's still there somewhere. I didn't delete it. I also notice palpitations much more if I've eaten a heavy meal. It's a strange sensation. I've never had my heart rate go as fast as you've experienced though. That's got to be terrifying!

On a different subject, I'm going out of town with my husband for a few days to celebrate our 20th anniversary. We're driving, and I hope I don't regret deciding to try a long drive with my back in the shape it's in. We'll see. I might not get a chance to check in here again until I get back home next week, so take care, everyone!

Lisa

Have fun!! Happy Anniversary, too!!!

[debbei]

Today marks three years since my surgery. The time has sped by. Life is very busy and I'm one of the lucky ones who has no pain and can do pretty much anything. (Doc says no heavy lifting and no running.) I still walk most days and life's good.

Unfortunately 5 months ago I was diagnosed with hypertrophic cardiomyopathy, which is a thickened heart muscle, which is probably genetic, (as is my scoli, which my maternal grandmother had) though we don't know of anyone in the family with heart problems. This means I need to take beta blockers every day. The medication makes me feel generally unwell, but without it, my heart will gradually fail.

But again, I feel I've been lucky, because it was discovered, and is treatable and I'm still able to do anything I want.

I have my business and I have three lovely little granddaughters who play a big part in my life, to keep me busy. The surgery was the best thing I ever did for myself and it's not just on my anniversary that I think gratefully of Dr. Askin and what he achieved for me.

Congratulations on your anniversary. I cannot believe time has gone by so quickly for us! I'm sorry to hear about the new heart condition, and that the meds make you feel unwell. How were you diagnosed? Did you have any symptoms?

[JenniferG]

Congratulations on your anniversary. I cannot believe time has gone by so quickly for us! I'm sorry to hear about the new heart condition, and that the meds make you feel unwell. How were you diagnosed? Did you have any symptoms?

Thanks Debbei. I can't believe how fast time has gone either. (Too fast, slow down time!)

I'd had palpitations for years, and had put it down to menopause. I then started to get what I thought was heartburn. I'd never had heartburn in my life and the first time I had it, was the worst bout, and that was, unbelievably, when I was in hospital a few days after my surgery. The pain moved up into my shoulder and jaw. They put me on the ecg and said there was an abnormality. But they also gave me some Mylanta (for heart burn) and the pain almost immediately dissipated. I had it once more, when I was driving, about 18 months later but it eased by itself, then one night in October, I woke up about midnight. I don't know what woke me because at first there was no pain, then it started. It gradually got worse and I woke my partner and he called the ambulance. The ambos did an ecg and said it warranted "further investigation." I then spent a couple of days in hospital having tests (blood, ecg, chest x-ray, cardiac ultrasound) and saw a Cardiologist who also did the Holter test, the Stress test and cardiac MRI. The condition is usually genetic. The medication, though making me feel unwell (though that's easing now) has stopped the palpitations. I'm still walking daily and doing everything I always did. I can't get in to see the Cardiologist now until July. Hopefully I will just remain on medication and there'll be no further concerns. Fingers crossed.