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  #11  
Old 18-04-2010, 08:05 AM
katherineP katherineP is offline
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hi annette,
im 39 yrs old married with two children. I had my mother come from sydney and help with the kids and help my husband (we live in melbourne).He does everything at home but during school holidays i had girlfriends help with the kids. I was in hospital 9 days couldnt wait to get home its just alot easier being in your own environment and recovering there. Surgery for me was my only choice although it gets difficult i take each day at a time. Ive read that young children are alot more resilient and recover quicker than adults.
i had 60 degree curve and over the years has progressively gotten worse. i had the anterior operation and am amazed at the results . please feel free to ask me any questions .thanks
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  #12  
Old 18-04-2010, 10:56 AM
Rodverta Braefusion Rodverta Braefusion is offline
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Hi Doms Mum,
That ride home did seem a bit long, only because i was scared about any potholes etc. I noticed in your first post you said he has a 48 degree curve, is this thoracic, lumbar or thoracolumbar? I had a 58 degree thoracolumbar curve and had it corrected to 5 degrees. I am now at nine months post-op and have had a smooth recovery (knock on wood, knock,knock). Adolescents on the other hand, tend to recover fairly quickly, it's not unheard of to see them back at school at 6 weeks post-op. Keep posting your questions and hopefully we can put your mind at ease.
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  #13  
Old 18-04-2010, 04:56 PM
Dom's mum Dom's mum is offline
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Quote:
Originally Posted by katherineP View Post
hi annette,
im 39 yrs old married with two children. I had my mother come from sydney and help with the kids and help my husband (we live in melbourne).He does everything at home but during school holidays i had girlfriends help with the kids. I was in hospital 9 days couldnt wait to get home its just alot easier being in your own environment and recovering there. Surgery for me was my only choice although it gets difficult i take each day at a time. Ive read that young children are alot more resilient and recover quicker than adults.
i had 60 degree curve and over the years has progressively gotten worse. i had the anterior operation and am amazed at the results . please feel free to ask me any questions .thanks
Hi Katherine,
That must have been so hard for you with children, glad you managed to get help but it is hard as a mum not to do things. I hope you contimue to progress well. I feel pretty dumb not knowing more detail about Dominic's scoliosis. I do know it is very low down and wouldn't benefit from bracing due to how low it is. I think the first visit we were just overwhelmed with it, the possibility of Marfans and leaving with what seemed like a handful of referrals to other specialists. This isn't about me but about Dominic but for a while it has thrown me back to the days where our first son Joshua was born and died and we entered the world of grief and genetics. I know we will have a huge list next time but also feel confident they will answer questions without us needing to ask. You guys seem so wonderful that lots of our questions will be answered beforehand or we will be more aware of the ones to ask. Thankyou, I think it is always such a help to know others are out there even though you wish they didn't have to go through it also.
Annette
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  #14  
Old 18-04-2010, 05:04 PM
Dom's mum Dom's mum is offline
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Quote:
Originally Posted by Rodverta Braefusion View Post
Hi Doms Mum,
That ride home did seem a bit long, only because i was scared about any potholes etc. I noticed in your first post you said he has a 48 degree curve, is this thoracic, lumbar or thoracolumbar? I had a 58 degree thoracolumbar curve and had it corrected to 5 degrees. I am now at nine months post-op and have had a smooth recovery (knock on wood, knock,knock). Adolescents on the other hand, tend to recover fairly quickly, it's not unheard of to see them back at school at 6 weeks post-op. Keep posting your questions and hopefully we can put your mind at ease.
Hi Rodverta,
Like I was saying to Katherine I feel a bit dumb not knowing the exact details. Our next visit will be the big surgery discussion so we left it at that as we had to deal with the other issues and specialists. His curvature starts very low down and was too low to benefit from bracing. It is a long time off school, I am not so worried about him academically but socially so plan to make sure he has contact with friends once he is able. Your correction sounds wonderful, they told us to expect about two thirds improvement so yours is way beyond that. Pleased for you.
Annette
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  #15  
Old 18-04-2010, 05:45 PM
kaitlins mum kaitlins mum is offline
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Hi Annette,
Kaitlin was in year 8 when she had her surgery. She was in hospital for about 8 days. After about 3 weeks I think she went back to school for a few half days and we played it by ear. She was desperate to get back to her friends and school (and i think wanted to put the whole thing behind her). Her surgeon gave the ok to do this as long as she did not carry anything heavy post op. I on the other hand felt terrified sending her to school with kids running every which way but it will be ok believe me. We built on the half days and probably by 6 weeks she was totally back to school with the understanding she could call us if it got too much (we never got a call!). Only thing is she cant play contact sports but has done things like ice skating, netball etc. Melinda xx
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  #16  
Old 20-04-2010, 04:49 PM
Dom's mum Dom's mum is offline
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Originally Posted by kaitlins mum View Post
Hi Annette,
Kaitlin was in year 8 when she had her surgery. She was in hospital for about 8 days. After about 3 weeks I think she went back to school for a few half days and we played it by ear. She was desperate to get back to her friends and school (and i think wanted to put the whole thing behind her). Her surgeon gave the ok to do this as long as she did not carry anything heavy post op. I on the other hand felt terrified sending her to school with kids running every which way but it will be ok believe me. We built on the half days and probably by 6 weeks she was totally back to school with the understanding she could call us if it got too much (we never got a call!). Only thing is she cant play contact sports but has done things like ice skating, netball etc. Melinda xx
Hi Melinda,
It sounds like Kaitlin had a good positive attutude.I can just imagine school and changing lessons - especially the stairs. We will cross that bridge when we come to it ,I am sure I will stress a lot more than him! I might rally his friends to be a "protection squad" around him. I can imagine walking around with the phone waiting for a call. What did we do before mobiles? We have the opthamologist this Thursday and the cardiologist next so the anxiety is building. Wishing our lives away to get to these appointment dates. Being very positive in front of Dominic, it is the middle of the night when it gets to you isn't it? Thanks for listening.
Annette
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  #17  
Old 22-04-2010, 10:51 AM
ferris ferris is offline
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Hi Annette you may also want to look at this website www.heartkids.org.au this site has an online resource that gives a great description of Marfan's Syndrome.
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  #18  
Old 22-04-2010, 09:03 PM
Rodverta Braefusion Rodverta Braefusion is offline
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Hi Annette, hope all is going well with Dominic. It sounds like he has a lumbar scoliosis. Let us know how you get on.
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  #19  
Old 03-05-2010, 08:08 PM
Dom's mum Dom's mum is offline
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Hello all,
Thanks for the support. We have had a busy couple of weeks. Dominic had good reports at both the opthamologist and cardiologist so that has calmed us down a bit. We got a last minute appointment today for Genetics this Friday and are off to Sydney the next Wednesday. Must get that list of questions written so we are as organized as possible. I am having skin cancer surgery this Wednesday so at least there isn't too much time to think in between!
Domninic has been asking more questions and it has been difficult talking about the possible genetic complications but gradually taking it all on board. Also coming to the realization that it won't be a holiday. Being gentle but honest with him. Thought I would see if he wants to talk to the school counsellor once we know where we are heading.
Annette
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  #20  
Old 04-05-2010, 10:20 PM
Rodverta Braefusion Rodverta Braefusion is offline
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Hi Annette, that's good news that you got for Dominic. Hope all the other pre-op assessments come back favourable. With regards to your surgery (skin cancer), I wish you all the best. I, myself have had four melanomas removed.
Once again, all the very best. Catch up soon on the forums.
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