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Old 20-07-2011, 03:04 PM
kimlorrain kimlorrain is offline
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Default surgery booked

Hi Everyone
Surgery is booked end of Nov. We are putting list of questions to ask. We are both to scared to ask "Have you paralised anyone", do you all think this way too. Would the doctor tell the truth, or do we really want to know. if you can think of other questions for us that would be great. Daughter is 17, doing HSC Oct/nov then hospital, no schoolies for her..
she is ok about it, we will go away late Jan. cant wait to hear. Kim
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Old 20-07-2011, 09:24 PM
Christine Christine is offline
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Default Re: surgery booked

My surgeon and the anaesthetists did not muck around. They laid it out for me and told me I may be die, or worse, paralysed. I liked that approach and I expect they are legally obliged to state that and make the risks clear. I also wondered if they would own up if they have paralysed anyone. Probably ethics prevent them from spilling the beans on any patients who have been casualties. But, thinking of anything going wrong did not make me at all consider cancelling the surgery...

The best thing is to be informed, use the forum, which makes you feel much better about the whole thing.

Young patients respond the best, remember. They have those bouncy bones I wish I still had!

Christine x
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Old 26-07-2011, 08:35 PM
Dom's mum Dom's mum is offline
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Default Re: surgery booked

Hi, Dom's surgeons went through all the statistics without being asked. I think they are obliged to, he was also very to the point in his letter he sent back to our GP saying something like "I have explained all the risks of this surgery, which include, but are not confined to paralysis etc, etc." Awful to read but has to be said. He did also tell us about a patient that had had problems which were only temporary, but nonetheless had happened.
We always found our consultations good and rarely had a question that we had to ask. Don't hesitate though if you have something you need to ask, a doctor said to me once "the only silly question is the one you don't ask". A great way of giving me permission to ask what I needed. Write down your questions before an appointment as sometimes emotion can stop you once you are in there.It is a big surgery, but they do have the best teams and they want our kids to be okay.
Annette
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Old 30-07-2011, 11:30 PM
caysula caysula is offline
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Default Re: surgery booked

Hi Kimlorrain

My 15yo daughter had surgery in Jan 2011 and I had all the concerns that you had. Allthough I was very afraid of the possible replies, I bit the bullet and asked the question, Surgeon said yes it has happened once. I didn't know whether to freak out or appreciate her honesty, but with a long and illustrious career one is a very small statistic. I also found out after our surgery that paralysis can be reversed, so with lots of physio and time they can recover or at least improve, I would check this with surgeons though as I was told by physio staff and a surgeon that wasn't involved in our surgery.
My daughter is now almost a normal teenager, she will never be perfectly straight but only the trained eye can tell and she has a story to tell. You'll be surprised by the resilience these young people have. So far none of our worst fears were realised and I sincerely hope your experience is the same.
Good Luck Sue
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Old 31-07-2011, 09:50 AM
Hobbs Hobbs is offline
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Default Re: surgery booked

Hi Kim,
My 13 year old had the surgery on 20.07.2011!!! 11 days ago! T4 to L4 for three incredibly defined curves. She is now home and doing way beyond any of my expectations. She has Marfans- a rare connective tissue disorder which ment there were many outcomes unknown and other issues (heart defects and bone and muscle strength and flexibility of the neck etc) that could complicated the surgery....The surgeons do this every week, they really know what they are doing.... medical procedures have come along way, and our kids are young and heal quickly.
Locate the scoliosis book that is doing the rounds as thats where I sourced much of my knowledge and questions...and like the others said, our surgeons were all too happy to take the time to answer all the questions.....like you I was worried about all sorts, but I didnt ask about the paralysing aspect as I just assumed any surgery on the spine would come with a predictable standard answer. I gained peace of mind on that issue by knowing I found no history on line or in the communities I talked to. With Jasmines surgery they placed silver disks on her feet, legs and skull to which the neurologist attached wires so he could monitor the nervous system throughout the time in surgery.... they knew instantly if the signals were not reaching the legs or if the spinal cord was stressed and could amend their procedure accordingly..... very reassuring to know this warning signal is available before any damage is done.
I strongly suggest as the books all say, a fit healthy body will recover quicker. Do non impact exercises such as swimming, for endurance and upper torso and arm strength. I am totally convinced that is why Jasmine is recovering so incredibly well.

Dont underestimate the long term effects stress has on you.....its a long stressful wait and you dont want to get sick.....get yourself a cleaner, I did but not before coming down with pneumonia! dont wait that long to support yourself. (easier said than done, I know) Good luck, stay strong and take time out to recharge your batteries...
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Old 31-07-2011, 05:17 PM
Rach's mum Rach's mum is offline
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Default Re: surgery booked

I too have just read 'the book'; David K Wolpert's Scoliosis Surgery: the definitive patients reference and found it excellent. You will find it makes you think of lots of questions to ask as you read.

I have also given this book to both sets of grandparents to read as they will provide a lot of our support base while Rach is recovering. They are interested of course in what's involved but I also thought that it would help them be properly prepared for what is about to happen. They don't have the first hand interactions with Drs that we do and their perceptions/expectations will be more accurate with detailed information.

I thought I'd mention this as I think that giving this book to whoever is your support base is as important as reading it yourself.

xx sonia
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  #7  
Old 23-08-2011, 11:54 AM
kimlorrain kimlorrain is offline
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Default Re: surgery booked

Thanks everyone for your reply's, I havnt been on the site for while. I'll be in touch soon
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