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Old 28-11-2015, 10:48 AM
chloejp chloejp is offline
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Question Surgery decision

Hey all,

Well it has been a year and a half since I posted last about my pain getting worse. I've been doing personal training and still seeing Physio and osteo but i am still managing 24/7 pain even if it is less intense than it was 2 years ago.

I have finally found a surgeon that I trust and had an appointment yesterday after getting a few more X-rays and a bone scan. I have a 40 degree lower curve and an 18 degree upper curve. He has explained to me that my top curve is decompensating and believes it will continue to do this. This I think means it is straightening out and as my head is already not centred over my pelvis, this could result in more visible deformity and arthritis down the track! He has also agreed that I have tried a lot of alternate methods and with my pain and age (24yrs) it would seem most beneficial to do the surgery. He plans T11-L3 anterior fusion.

If I decide to go ahead it would probably be around April next year. I am terrified but it is also exciting to have the possibility that I won't be in pain 24/7 down the track!

Has anyone had a similar fusion done as an adult? Would love to hear stories. I am also interested in seeing photos of anterior scars as everything on Google is posterior! He said the scar would go from the back where my 10th rib starts around to my belly button! The thought of a scar across my stomach is daunting!

Would love to hear all your experiences! Thanks

Chloe
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Old 29-11-2015, 04:40 PM
Jules Jules is offline
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Default Re: Surgery decision

Hi Chloe! I'm fresh from surgery, only 8 weeks post op. I'm in my mid 30s so older than you and I had a 68o curve and was fused from T11 to L3, anterior fusion as well. The first 2 weeks I stayed in hospital and it was not nice. I felt horrible for a number of reasons. Having said that the hospital experience tends to be extremely different amongst scoliosis patients, some don't mind it that much, others have more issues. But I'm feeling much much better now!

Anyways, you were talking about the scar as a result of an anterior approach. It's not really anterior (at the front) but lateral actually. Mine is fairly long and it starts almost on my groin o the left side. It then spirals upwards, going from the front to the back, and stops below where my left shoulder blade ends. I hope you get the picture. So most of it is actually on your side.

I'm recovering well. My surgeon only asks for another X-ray on the 3 month follow up visit so we still don't know how much correction I got but my back looks so much straighter! My rib hump is gone and I have a waist again now! I'm weaning off my pain meds really well, only one to go now. I still feel very fatigued and need lots of rests during the day. I have to pace myself and do one thing at a time, then rest. But now I rest much less and am able to do much more than before.

I waited more than one year for my surgery due to personal circumstances and it was not very nice. It was like I was in limbo. So if you have decided don't leave it for long. If you are planning to have it done in April I think that's a very reasonable time to get yourself psychologically and physically prepared for it and also to plan things in terms of work and support because you will need support from family or friends.

I love to talk so if you want to ask anything else even if you think it's silly just send me a pm or write here and I will answer.

Take care,
Jules
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Old 29-11-2015, 08:37 PM
chloejp chloejp is offline
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Default Re: Surgery decision

Hi Jules!

Thank you so much for your response! My head has been spinning since Friday and it was nice to hear from someon who has just been through it! Your information is so helpful and real, I definitely don't expect the hospital stay would be easy or comfortable! But I am glad to hear the op went well and you are recovering well too!

I know my curve at around 40 degrees is usually considered minor but due to the amount of pain I have and the decompensating top curve I am really leaning towards getting the surgery. And can definitely appreciate that waiting and putting it off would make it worse! I am a bridesmaid in March so that's my waiting point. Unfortunately the lovely dress cinches in at the hips so my scoli hip will definitely stand out on the day!

I work for my family business and even though the commute is an hour, it is flexible enough for me to work from home for 3 months and ease back into it after that. My parents only live five minutes away and my partner lives with me so I have a lot of support.

Your scar sounds like it goes a long way on both sides! I wonder if that is due to the size of your curve... Do you mind pm'ing me who your surgeon was, I think you are from Melbourne and I'm just curious

I will definitely be taking you up on the questions and talking over the next few months!

Thanks again
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Old 30-11-2015, 02:30 PM
Jules Jules is offline
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Default Re: Surgery decision

Hello again!

I can definitely understand that gradually increasing pain would make you lean towards having the surgery, even though your curve is not huge. I knew I had scoliosis for a long time but always thought it was mild and never had problems until I started having more and more pain and discovered this huge curve out of the blue. So I had two reasons, pain and worsening severe curve.

It's great you can work from home and that you have lots of support. You will need it!!! And you will need a decent break from work even if you can work from home because you are going to feel so fatigued! But things do get better and quite quickly I must say. I'm still not back at work and won't be for a while due to the nature of my job.

If you are in Melbourne chances are we are seeing the same person. We are not supposed to disclose names here but I will send you a pm ok?

Good luck with everything, and I'm sure you will look fine in your bridesmaid dress, most people could not tell had a big scoliosis unless they knew what to look for
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Old 30-11-2015, 02:36 PM
Jules Jules is offline
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Default Re: Surgery decision

Oh I forgot to say, my scar is on the left side only but goes from the front to the back, not on both sides! Yes it's a big one!
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Old 30-11-2015, 03:19 PM
Annette
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Smile Re: Surgery decision

Hi Chloe,

If you get a chance please read my newsfeeds and current one on the 18th November, so I don't need to waffle on again.

I am a young 50 year old lol and had anterior surgery fusion T11- L3 with a 12 inch scar in March 2015. I had surgery in Melbourne and had an amazing surgeon.

This site has been great I don't feel alone but wished I could of spoken to someone in the same situation.

Please ask questions even if you think its dumb and please contact me for anything before surgery to after surgery.

Hope I can help in any way
Annette
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Old 30-11-2015, 07:02 PM
chloejp chloejp is offline
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Default Re: Surgery decision

Hi Annette! Thanks for responding, i will definitely go through and find your threads and read your experience

Will let you know if I have any questions!
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Old 01-12-2015, 08:36 AM
fiftydegrees fiftydegrees is offline
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Default Re: Surgery decision

Hey Chloe,
It's sounds like the other girls, and I now know Jules personally, have covered things for you.
Sounds like we are all in Melbourne and all have the same amazing surgeon. I am over 7 months post op. I was 42 and left pain go off the rictor Should have done it many years before.
But I wanted to mention my scar, anterior approach. It's 39 cm long, wrapped around my left side and still tender but I wear it as a badge of honour because I'm so proud of what I went through to achieve it.
Feel free to reach out to me if you want some more advice.
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Old 01-12-2015, 11:01 AM
Annette
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Default Re: Surgery decision

The younger you are the quicker the recovery !!

My ribs are still sore and my surgeon tells me at my age it will take 12 months to recover. Its nice to wear tight t-shirts and dresses and not worry about the hip sticking out. Mr scar is just a fine 30cm line and looking less red.

I was one of lucky ones I had little pain more a muscle pain on my left back hump but had a great physio that knew what she was doing.

I unfortunately wore a back brace longer than I hoped for and went back to work after 4 months so it became uncomfortable.

Loving the new stories.
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Old 02-12-2015, 08:12 PM
Dianne Dianne is offline
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Smile Re: Surgery decision

Good to hear you are doing well Annette, im looking at surgery in 58 days, and not counting, keeping as fit as I can. Hope you are feeling better everyday.
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