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Megan_aust
02-12-2009, 12:18 AM
I'm almost 26 years old and was diagnosed with scoliosis at the age of 12. My curvatures are approximately 35 degrees thoracic and 20 degrees lumbar. I wore a boston brace from when I was 14 to when I was 16 (reasonably compliant), but my orthopaedic surgeon recommended surgery.

My parents and I refused surgery because I had congenital heart disease as well. Last December I needed open heart surgery to repair an incompetent valve. Before the surgery my heart was grossly enlarged to the point that I had chest pain, I was short of breath and suffered frequent arrythmias. Nine weeks post surgery I feel fabulous as the symptoms I described are gone.

Over the years I have toyed with the idea of having surgery to correct my scoliosis. Though I try not to let it bother me, it looks awful, and depending on how stressed I am and too busy to skip exercise, it is sometimes very painful (although oddly, I haven't had pain due to scoliosis for over a year now).

So this is basically the problem - my heart condition prior to surgery was life threatening. I needed the operation or I would probably die. The surgery was so justified and so worth it.

My scoliosis is merely irritating by comparison, but there could be potential for pain and disability down the track that would make life so difficult the condition might as well be considered life threatening.

However, I also know how disruptive and painful major surgery is having had three open heart surgeries (one as an adult - I have no sick leave left now :)). I also don't want to have another pleural effusion or cardioversion for as long as I live if I can avoid it.

I know based on my experience of heart surgery that corrective surgery for scoliosis could make a big difference to how I feel both in terms of my general health and self esteem.

I really don't want to pass up a chance to feel even better than I already do.

After one major surgery, I feel like I'm pushing my luck or being greedy trying for another one. There's also probably going to be more surgery risks due to my pre-existing heart condition as well.

I guess this is just a vent really - I'm not as brave as you guys :D

But seriously, if anybody out there has been through scoliosis surgery when they have other medical issues that have also needed major surgery, I would be interested to hear how you went.

pmsmom
02-12-2009, 06:35 AM
I guess this is just a vent really - I'm not as brave as you guys :D

But seriously, if anybody out there has been through scoliosis surgery when they have other medical issues that have also needed major surgery, I would be interested to hear how you went.

Hi, Megan.

While I do not have the experience with surgeries that you have, do not put yourself down about not being brave! You ARE brave with everything you have been through at your young age!

Hopefully others will be able to answer your question--we are awaiting scoliosis surgery for our 16 year old dd.

Take care!
Marian

debbei
02-12-2009, 10:07 AM
Megan,

You have been very brave with all of your heart issues. I am so glad that things in that area have improved for you and hope that it stays that way! As far as the scoliosis, are you being monitored by a scoliosis specialist? YOu should be. Do you know if your curves have been progressing in recent years? You should probably go get baseline Xrays now so that you have them when you're older like me :)

At your age, if you're not having pain/symptoms, I would think that the best thing to do is to keep your core, arms and legs strong, and do some aerobic activity as well. That way, if down the road you do need surgery, you are in really good shape going into it. Again, I think you should be checked now by a scoliosis specialist, and if he says that you're ok for now, go back every few years, or if you feel like you are getting more crooked. I ignored those signs, and I shouldh't have--like my waist getting shorter, developing a 'roll' on my waist, which I assumed was just extra weight. Also, measure your height now and do again every few years. IF you're shrinking, something's happening in your spine.

Hopefully, your curves will stay put.

Good luck!

PNUTTRO
02-13-2009, 04:32 PM
I would recommend talking with your cardiologist about it first. If that goes well, then you will have to find an orthopedic doctor who is comfortable treating you. I don't see why you couldn't go through with the surgery if you and your doctors feel it is appropriate and you can feel safe with the team you choose. It may take a little while to work it out, but the process should help you decide what you really want or need.

Congratulations. Many people with your defect never live to 25. Your parents should be commended too.

Good luck.
p

Megan_aust
02-17-2009, 04:14 PM
Thank you all for your kind words. I am actually going to the cardio in March so I will talk to him about the possibility of non cardiac surgeries down the track (I will at least need my wisdom teeth out, probably).

I also have some x rays from 2006, 7 years after my treatment finished. My cardiologist was keeping a record of my height for the purpose of monitoring my scoliosis, which I'd actually forgotten about. Being a paediatrician he says he has a number of cases with both illnesses.

There are a few scoliosis specialists where I live. I hated the one I saw as a teenager, so I might find myself a new one.

I guess having surgery recently made me realise what a big deal my health issues really were - they fade into the background when you're not experiencing a crisis about them.

I would probably give myself a few years before I have surgery, if I need it.

At least, I will finish my PhD first :)