Congenital Heart/Scoliosis

[miranda_m]

Hi Everyone,
Firstly I just want to say finding this www and forum has been a real god send for me. At a time when I was feeling quite lonely and sorry for myself I decided to do some research into Scoliosis and came across this site. I cried when I read peoples stories, just to know I wasn't on my own has given me alot of courage.
So here is my story and I'll try to make it brief.
I was born with a heart defect and was operated on when I was a few hours old and again at the age of 2. Neither were open heart surgery. The doctors feel that the surgery may have cut nerves etc which has led me to form scoliosis, but there is no definite answer.

Around 13 my mum noticed my scoliosis and I have had regular check ups since. I never had a brace, was never offered on. Was it too late at that point? or maybe they werent used much then or their benefits were not proven then? i don't know.

I am now, 30 and on Feb 19th I will have posterior fusion and costoplasty.I think my curve is around 66 and not sure about my lumbar curve, but they are hoping that will straighten out after.

To prepare for my op I have spent 3 months doing an intense course of Pilates and Gyrotonics. I have been doing pilates for the last 4 years and more recently Gyro. I can't stress enough the benefits these forms of exercise have on those with Scoliosis and especially those in pain and discomfort.
They are stretching, strengthening exercises, that build your abdominal core to support your body. The exercises are very specific so you can really build on particular areas. For us with Scoliosis it means building the muscles in the back that are weaker and to stretch out the muscles that are tight, constricted and painful. I have also done some alternative therapies like CranioSacral, Polarity and Raindrop Technique, in one session I grew 1/2 inch. I won't go into these now but they have been hugely beneficial with relaxing my muscles around my spine and allowing my curves to be softer.Let me know if you want more info
After 3 months I stand straighter, feel stronger and am much more flexiable. Now I am mentally preparing myself.

Questions I have are:
Is there anyone out there with a congenital heart defect that now has scoliosis?
I am having my op in England, does anyone have Mr Noordeen as their doctor?
Does anyone know what vitamins/supplements that are good to take before and after the op?
After reading some messages it seemed people had some pain years after there op because of inflamation etc. That worries me. I realise I have been v lucky and not suffered from pain so I don't want to now.
Do you feel very different after having a load of metal bolted to your spine?
Are there things you really can't do that you know you could do before?

I am sorry this is so long but I wanted to share my experience and knowledge that I now have and pass it on to you.
Look forward to hearing from you fellow Scoliosees
M

[gayle]

i had a congenital heart defect called atrial septal defect.they found my scoliosis at age 11 but did not find my heart defect till age 21.i got that repaired but not sure if that is connected to scoliosis.i havent had my surgery yet but will in 3 weeks.

[lisanicole]

Hi Miranda!

I'm so glad you found this site, everyone here will be full of information and support. I don't have a heart defect, but I had my surgery 6 years ago so I can answer some of your questions.

As for the "load of metal bolted to your back." It's different for everyone, some people are more concious of their hardware, some not. Some days when I am tired or worn out, I am more aware of a slight weight in my back. Or when I'm in extreme temperatures, either cold (I live in Canada!!) or hot. But on most days I can't feel anything.

As for what I could do before & after... I can't bend at all in my upper body. I was a competitive dancers 5 days a week for 10 years. I had to stop dancing (I have heard of many people who kept with it) because I just couldn't do a lot of the more flexible moves anymore. However, after my surgery I took up singing and ended up getting my University degree in voice (so everything happened for a reason I'd like to think).
But other than that I can't think of anything that my back has really kept me from - except maybe skydiving, or bull riding.
I have been parasailing, tubing, and on crazy rollercoasters. You just have to know your limits - for the first year and a half after surgery I took it SO easy and didn't do anything to jeopardize the hard work my surgeons had done.

As for vitamins & supplements I went the whole nine yards and went to a Naturepath doctor. I was on lots & lots of daily vitamins, and a very healthy diet. I did intense pilates for the year I was on the surgery waiting list. It was a while ago so I can't remember all the vitamins I took, but I know there was B12, Zinc, Calcium, Vitamin E... and Arnica. I had a protein shake every morning. Just make sure to consult with your doctor on everything you're taking.

As for pain after surgery - I was a lot like you, before surgery I had very very minimal pain. My curve progressed to 80 degrees before my surgery, so right before my surgery is when my pain (headaches, backaches, etc) started. About 2 years after surgery I started having a lot of pain due to inflammation of the joints (mild arthritis) in my fusion. BUT I went to my scoliosis specialist here, got the drugs & creams necessary and I have been able to control my pain. And even with the pain I have now, I would never NOT have had the surgery. You basically get a chance to have a whole new body, a straighter back. It's really a beautiful thing.

WOW! Sorry this turned into a novel... but I am passionate about scoliosis!

Take care luv... all the best with your surgery!

[macky]

Hi Miranda, I am so glad as well that you are with us. I have had the rods in my back for 40 years and honestly (until 1997) didnt even know they were there. Childbirth was a breeze, my fused back made it easier I was told with the actual delivery.

I had the old Harrington rods and was lucky to have no pain for 30 years either before or after. I was never not able to not do anything I wanted to do, and believe me I had a ball.

I am so glad that you are in touch with your body the way you are. I liked the way that you wrote your post as well, Good luck honey, please keep in contact and I will be praying for you on Feb 19th, its on my calender now.

God bless,
Macky xx

[Shari]

Welcome Miranda,

You're young, intellegent and strong. Already a pretty good combination, but are we ever really guaranteed any certain outcome no matter what path we take in life???

Your fears and concerns have been felt by every one of us at one point. There may be things you can't do afterwards and then again there may not. Someone will be able to help you on the vitamins and supplements.

As far as how you will feel afterwards, I think that's an individual thing. We are all the same to a "degree" but we all have different experiences. Don't compare yourself to anyone else.

I am sometimes more aware that I have hardware than other times. And with each passing month everything seems to lessen. Sometimes it takes some of longer than others, but we still get there!!!

Just remember you're young, strong and smart, so stay that way!!!

Shari

[miranda_m]

Wow, thank you all for your responses. I feel truly touched!
Just to know that you have read my thread and answered my questions, really makes me feel stronger, positive and happy.
I am lucky to have great support through my family, friends and a wonderful boyfriend, but somehow reading your replies and reading your words of encourgement means something I can't even put into works.

Sorry don't mean to sound emotional, but hey, this is an emotional time.
Thank you from the bottom of my heart and keep them coming.
Miranda

[MishP]

Hi Miranda,

I don't know if you would consider what I have a defect. A doctor never told me I had a heart murmur until about 5 years ago. After getting an ecocardiogram, they found that I have a bicuspid instead of a tricuspid in the valve of my heart. At this point, it's not something that I've had to have surgery on or get fixed. I'm not sure whether this has anything to do with the scoliosis or not.

I wish you lots of luck on your surgery. Be sure to let us know how you make out.

[miranda_m]

Just to add..

Hi all
...to my thread my operation for the 19th was cancelled so now waiting for a new date. This may be the 12th March. so fingerscrossed.
V sad to hear the news about Gayle, my thoughts and prayers go to her family. How awful for that to happen, when there was no reason for it.
M x

[Houston Curves]

Good luck

Good luck Miranda! My prayers will be with you.

Ann

[miranda_m]

Hey Ann,
thank you so much for your message. Have you had surgery? I can see your curve has worsened over the years. Would be interested to hear from you.
Thank you
Miranda

[Houston Curves]

Surgery

No, I haven't had surgery yet. I was definitely going to have it with Dr. Shelokov in Plano, but now I've decided to keep looking around. I want to make the best selection of doctors. Yes, my curves have gotten worse and I've been told that they will continue to get worse and to accelerate once I hit menopause. I'm in a lot of pain already, and have been for over 10 years, but I've been putting off such a major surgery because I didn't want to limit my activities. The irony is that NOT having the surgery HAS limited my activities! I don't like to go out anymore and, when I do, I'm always sitting there thinking about how much it hurts. I always "soldier through" for my husband's sake. I'm just so tired of being like this - not really being able to enjoy life. But I'm also afraid of not waking up after surgery or not waking up as myself (stroke) mostly because of my two little girls (15 months). However, I also don't want their memories of me to be as a grump. There doesn't seem to be any right answer except to have the surgery, but then I get "stuck" choosing who will do it and when. How did you make your decisions?

Ann

[Megan_aust]

I have CHD and scoliosis too!

Hi Miranda,

I was wondering the very same thing about whether there was others out there with congenital heart disease and scoliosis.

My heart disease was diagnosed when I was 6 days old (I'm now 24). It was a ventricular septal defect (VSD), which was causing deoxygenated and oxygenated blood to mix (so I was blue). I was operated on to repair heart defects when I was 4 months, 5 years and 10 years old.

Since then I have found that my heart is still not pumping blood effectively (because the patch in my heart stops blood from mixing but does not act as muscle), and there is a backflow of blood in lower veins and my liver. A specialist recently told me that I may eventually have liver disease as a result but she was not sure as she'd only seen 3 people like me in 20 years. There's nothing the specialists do and I just have to keep taking digoxin everyday.

I was diagnosed with scoliosis as well when I was 12. The doctors said that surgery may have contributed to that, as there seems to be an overlap between scoliosis and heart disease. It may be unequal tension developing as a result of the scar, or the positioning of the heart and resulting unequal weight distribution, but nobody seems to know for sure. My scoliosis continued to get worse, but fortunately responded to bracing (my curve stands at 31 degrees, thoracic). My parents and I refused surgery when I was 14 as I had only had major heart surgery 4 years prior.

I think my life has changed alot as a result of these conditions. Fortunately I knew about them early on and had to plan for the type of life I would have. For example, I made sure I trained for a fairly sedentary job (I am a research assistant who works from home most days).

Contrary to my plan I ended up getting married, but my husband and I have agreed that we won't have any children. This is mainly because of my heart disease and liver complications (rather that scoliosis, which on its own doesn't seem to pose to many serious threats). My cardiologist said I could have children if I wanted to 'more than anything else in the world' but otherwise forget it. There's not much information regarding potential risks to myself and my children as a result of heart disease and my medication, but personally I feel that it would be very selfish to place a child at risk of multiple diseases with a mother that isn't well enough to look after them.

I feel very fortunate to have an understanding career/ boss/ husband (sometimes)/ family and friends. As a result of learning about my diseases early on I have been able to carve out a decent life for myself where my problems are accommodated.

Take care,

Megs