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Old 06-04-2014, 12:51 AM
kescb kescb is offline
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Default Help.It's overwhelming!

Hi everyone, I'm new to this with only discovering our 16 year old son has adolescent idiopathic scoliosis. I'm trying to take so much in at present. When visiting the specialist there is so much to take in and get all the information that is presented to you. Surgery has been suggested to us, two surgeries a week apart as the best option for him. I'm trying to gather as much information as possible. We have booked surgery in for him. Our son said, "I want it done , I dont want to live like this.' A very brave thing to say. I am not sure what to expect and what we can do for him. Feeling pretty emotional at present as its all come as a bit of a shock.
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Old 06-04-2014, 01:52 AM
jane jane is offline
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Default Re: Help.It's overwhelming!

Hi, yes the initial diagnosis is hideously overwhelming and you wonder how/why it is happening to your child and in my daughter's case how very quickly it happened. You are lucky to be able to get surgery quickly where you live. we live in rural WA and had to travel to Melbourne to get the surgery done due to a very long waiting list in Perth and no private health choice either. Our other option was to have her in a brace for 2 and a half years to hopefully contain the curve with surgery definitely happening after that. This was not an option we were at all happy with and so we chose to go East. Our experience in Melbourne was wonderful where we were looked after so well by an outstanding surgeon, brilliant dedicated scoliosis nurses, brilliant general nurses, lovely surgeon's receptionist and fantastic hospital facility. The week we spent in hospital was torrid for both my daughter and myself but the nurses allowed me to do most of her care after the second day so I would be prepared for the home nursing component. The drug regime is pretty full on and you have to be very organised to administer and monitor it. They don't really warn you about how the 'coming off' the drugs effects your child so quiz them about that so you know what to expect. I had 8 weeks in total off work to look after her but as it turned out some of this time was just being a available close by once she was back at school. Sophie went back to school part time at 4 weeks post surgery and was back at school full time 6 weeks post surgery, when she was also drug free. she has not taken any medication since that 6 week period and is now 22 months post surgery. She had to wear a lightweight brace for 12 weeks after surgery for precautionary reasons. At 3 months post surgery Sophie started swimming again and at 9 months post surgery was swimming fast at the Interschool carnival. There are stories on this forum of kids who are back to elite sports levels not too long after surgery and one girl has just made nAtionals for swimming which is very inspiring. Sophie runs, swims and rides her bike just fine and still gets dux of her year group. The parents who contribute to this forum have been my lifeline and their stories help reassure you so much. I wish you and your son all the best and if you need any more questions answered I might be able to help you more.
Jane
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Old 06-04-2014, 01:51 PM
MAB MAB is offline
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Default Re: Help.It's overwhelming!

Hi, it doesn't seem long since it was me posting on this forum for the first time, with my then 14 year old son having surgery in August 2013. He was diagnosed with scoliosis in April last year, after developing what seemed to be a very sudden curve (just before surgery he had a 68 deg curve T4 - L1). He was in hospital for 5 days overall, the first night after surgery was in ICU. I stayed with him every night after that, with a sofa bed beside his bed. Like Jane, I took over most of the care after the second night, which made it much less overwhelming when we returned home. The physio visited the day after surgery and had him sitting up on the side of his bed for a few minutes and then visited daily, with him taking his first steps using a frame 2 days after surgery. By the time he left he was walking well, albeit tentatively. The time in hospital is intense, for all concerned, and for the first few nights, there wasn't a lot of sleep happening. He used a button system to administer his own dosage of drugs for the first few days and then was taken off this and put onto oral meds - it took a while to sort his oral meds out, and minimise side effects, especially vomiting. Once home, it was much easier - we went out a couple of times a day walking, building up distance slowly, and he found sitting in a padded computer chair the comfiest place to sit. Overall he had 6 weeks off school, a little longer than others, mainly because he had to walk 20 mins to/from a train station and then take a 20 min train trip to school - the trip itself exhausted him initially. We were looked after wonderfully by our surgeon in Sydney and received so much support from others on this forum - it is a lifeline to sanity for parents! We have just been for his 6 months check and life continues to get back to normal - pretty much the only thing his surgeon says he can't do is participate in contact sports. Stay strong, ask as many questions as you can and know that your son will most likely have more resilience than you - the strength of character my son displayed before and after surgery was my inspiration and kept me strong. Good luck and I wish you and your son all the best.
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Old 06-04-2014, 07:33 PM
Eliz Eliz is offline
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Default Re: Help.It's overwhelming!

Hi, I'm another one with a very similar story! My son will be 17 in July and was 12 months postop in feb. All good now and last year seems like a life away! My son has very little memory of the post op period and wouldn't be too scared if he had to do it again I think.
Your son has the right attitude and will get through it, it really is a life changing thing. Especially when you read some of the stories on the adult forum!
Keep asking questions, we all want to help you out wherever we can.
Hi to Jane and MAB , we all can't stop with the forum as you can see! It is a lifeline when you are a newbie like you. Hope to hear of your progress. We can private message names of surgeons etc if you are interested. Get friendly with someone in your state. I'm in WA as well but surgery in Melbourne. Liz.
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Old 14-04-2014, 06:21 PM
Dom's mum Dom's mum is offline
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Default Re: Help.It's overwhelming!

Hi, a quick reply. Sorry you and your son have to go through this. It is so tough but when the curves get so bad you know it is the best decision. My son had surgery at 15 so is now three years post op. He too knew he needed the surgery and wanted it done but it is still pretty scary. i remember wanting to cancel the surgery the day before, I just felt I couldn't breathe with worry for him and knowing that his life would be forever changed.
We had full confidence in our surgeons and could approach them with questions - makes a huge difference and travelled from Newcastle to Sydney for his surgery. If you read some of my old posts it might help with a little information.
Please feel free to ask any questions.
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Old 15-04-2014, 10:18 AM
Robyn66 Robyn66 is offline
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Default Re: Help.It's overwhelming!

Hello, I know exactly how you are feeling. My 14 year old son, who also has other health issues is about to have the surgery. It is considered quite urgent due to the rapid increase in the cobb angle and that he has several curves. I am currently waiting on the surgery date which will be in the next few weeks. We need to travel from near Darwin to Adelaide and may only have 48 hours notice. Luke is very frightened and we are all very stressed. I was given a web site by our surgeon called "setting Scoliosis Straight Foundation". There is a downloadable handbook on this site which was very helpful and I feel better after reading it.
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Old 16-04-2014, 10:26 AM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: Help.It's overwhelming!

Hi Robyn66, so sorry to hear about the urgency in the surgery. I just wanted to let you know that, due to the short notice that you will be given and the fact that your son is frightened and you all are very stressed, I am offering to meet with you to offer support. I live near Adelaide City. I am assuming that if you are not a Private patient, that you will be heading to the (hospital name removed by admin). I am currently 2 weeks post-op myself and doing very well. I know i am a lot older than your son but am happy to offer support based on my experience. Best wishes, RB
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Old 16-04-2014, 10:36 AM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: Help.It's overwhelming!

Welcome to the forum kescb, it always breaks my heart when I see another parent have to go through the stress of their child facing scoliosis surgery, however, you have come to a very welcoming and helpful forum. I hope that you can find some peace in reading the stories of other parents on here. My best advice to you is gather as much information as you can, ask your surgeon, ask on the forum etc. As Jen says 'knowledge is power!', you will probably find that after all this information, you will be a little less stressed. Best wishes, RB
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  #9  
Old 20-04-2014, 06:18 PM
kescb kescb is offline
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Default Re: Help.It's overwhelming!

Thank you so much everybody. Reading your replies has made me tear up (and give me strength)and words will never express my gratitude to you all.

I have constant thoughts of are we doing the right thing(which I know we are, but having to decide now on one surgery or two? ) So I'm off to see our GP to also ask lots of questions. I just hope and pray that choosing the two operations is the way to go. I know that this must be done and as I look at him each day I see his uneven appearance , which is becoming more noticeable, or as the Dr put it , has significant truncal imbalance to the left. I feel sick and anxious and it is constantly on my mind. I will continue to read the posts in the forum which has been without a doubt my saving grace. I must keep reminding myself to take a day at a time.
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  #10  
Old 22-06-2014, 11:08 PM
kescb kescb is offline
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Default Re: Help.It's overwhelming!

Hi everyone. Our son is now day 4 following the two stage surgery a week apart. Tonight is his first night out of ICU. Tomorrow its onto oral meds so that should be interesting. The surgery itself went very well and the Dr was very happy. He should be home by the end of the week. I sincerely thank all who have helped along the way. Its a journey made easier by all the support and information.
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