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  #1  
Old 6th September 2011, 11:50 PM
Karenphillips Karenphillips is offline
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Smile Hi all, back again

Hi
I was on here ages ago, my daughter Imogen has rapid onset scoliosis. She is 10, diagnosed last year. My partner died suddenly in January and Imogen has been really ill with lots of things, perhaps all linked? I am certain they are.
Back now, back on my feet, supporting 3 children as a single mum. Imogen scoliosis has got really bad in the last 3 months, back to see her surgeon in a couple of weeks. She has a hump now and her breast bones are really protruding. I been looking at marafans syndrome?
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  #2  
Old 7th September 2011, 09:20 AM
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Rachie Rachie is offline
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Default Re: Hi all, back again

Hello and welcome back.

I'm so sorry for your loss and that you now have to deal with Imogen's progressing scoliosis. If you are based in the UK there is a great charity called Winston's Wish that helps children come to terms with the death of a parent. If Imogen's grief is showing itself as illness, it may help to channel her grief in other ways. Just a thought, I've never been in your situation.

Best wishes,
Rachie x
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Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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  #3  
Old 7th September 2011, 11:11 AM
andrea andrea is offline
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Default Re: Hi all, back again

Hello! I'm so sorry to hear of your loss. I'm glad that you're now back on your feet. What kind of things has Imogen been poorly with? Is this what has led you to think of Marfan's? I don't know too much about Marfan's (Ivan is our resident expert) although i understand it's hard to diagnose. Hopefully your consultant will be able to put your mind at rest or refer her for further tests.

I hope the appointment goes well
Andrea xx
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Mum to Erin, 10, diagnosed with 62 degree curve in May 04, aged 21 months. Serial casting '04-'07. Growth rods inserted June '08 under Mr Tucker at RNOH, Stanmore, UK. Surgery October '11 to replace a broken rod.
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  #4  
Old 7th September 2011, 03:26 PM
Karenphillips Karenphillips is offline
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Exclamation Re: Hi all, back again

Hi
Thankyou for your messages.

Imogen has chronic ITP and also hypermobile joints, also mild learning difficulties and flat feet. All of this seems to have been diagnosed since she developed scoliosis x
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  #5  
Old 19th September 2011, 11:31 PM
Karenphillips Karenphillips is offline
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Unhappy Re: Hi all, back again, update from today

Hi
Well we went to the appointment at notts today, been confirmed Imogen will have surgery, curve 47 degrees, I really not sure what's going on though.
He could have waited until she a bit older, she only 10, in pain now though do doing it sooner.
Having spinal fusion I think. Rod? Still early days but not explained very well. What's it all about, I always thought she would have a growth rod put in? X
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  #6  
Old 20th September 2011, 01:42 PM
andrea andrea is offline
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Default Re: Hi all, back again

Hello. I'm sorry that it's been confirmed that Imogen needs surgery. I'm guessing that it will be fusion, especially if he didn't mention growth rods. I think I'm right in saying that by the age of 10, 80% of the spine is fully grown, so she won't miss out on much height having the fusion now. She'll also gain inches as they straighten her out, and her limbs will continue to grow, so don't think that the height she is now is as tall as she will be.

What did he say about the Marfan's concerns?
Andrea x
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Mum to Erin, 10, diagnosed with 62 degree curve in May 04, aged 21 months. Serial casting '04-'07. Growth rods inserted June '08 under Mr Tucker at RNOH, Stanmore, UK. Surgery October '11 to replace a broken rod.
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  #7  
Old 21st September 2011, 04:44 PM
alices mum alices mum is offline
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Default Re: Hi all, back again

Hello I am sorry to hear your daughter needs surgery,it was thought my daughter might have had marfan syndrome to,we were sent to the gentic cardiology clinic they said she was ok and we have to goe for a follow up appoiment in 2013 If you have any questions about the appointment I would be more than happy to let you know what happened to us
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  #8  
Old 30th September 2011, 11:08 PM
Karenphillips Karenphillips is offline
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Question Re: Hi all, back again

Hi all
Well, where do I start? Imogen my daughter is 10. She has scoliosis, only noticed last October, curve now 47 degrees in the lumbar area, looks to me as an s though.
I was given two choices as to who should care for her, stanmore or nottingham, I opted for mr grevitt at Nottingham..... I think he is good?
Other things have been found out that I did not know. She has chronic itp which means her platelets are destroyed in her spleen so she has spontaneous bleeding. This is now managed and they will remove her spleen. They will look at spinal surgery next year.
They are talking about fusion .... I thought they would put in a growth rod?
She was given the choice of where she wanted the incision, she opted for on her back!
She was also asked if she wants it corrected now or at 13 years she opted for now?
She has a severe pigeon chest which has happened since her scoliosis, I am told this is nothing to do with her back?
She also has hyper mobile joints!
Testing her for marafans also.
So many unknowns, so many questions, any comments re the above? Xx
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  #9  
Old 1st October 2011, 10:57 PM
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clairabella68 clairabella68 is offline
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Default Re: Hi all, back again

Hi Karen

I'm so sorry to hear of your loss, deepest sympathy. xx

I can't comment on everything you asked, just on my own experiences.

My daughter had surgery at 11, she had fusion - not growth rods. She continued to grow and is still growing.

Sorry, I cannot help in anything else :-(

Thinking of you, Claire xx
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  #10  
Old 2nd October 2011, 08:58 AM
Karenphillips Karenphillips is offline
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Smile Re: Hi all, back again

Hi Claire
Thanks for your reply.

They are saying imogen will have fusion, not growth rods.

Did your daughter have fusion because they said at her age it was what they should do?

Are you able to give me a summary of how it all happened?

I am on my own with NO support and I need to work out how I am going to cope with my other two daughters. I have read that imogen is not allowed in a car for about 6 weeks after surgery!

Thankyou.

Karen x
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  #11  
Old 3rd October 2011, 01:03 PM
stana29 stana29 is offline
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Default Re: Hi all, back again

Hi Karen,
My daughter is also 10 and she had her rods inserted in Feb this year. We have an app. in two weeks to discuss the future. Some say that children gain 80% of their torso length by the time they are 10 years old but it seems like my daughter hasn't reached this yet, I guess they are all so different - she only turned 10 last month and she is 135 cm - 4 feet 5 inches - she definitely has lots of growing to do especially when her dad and I are quite tall. I am 5fee 7inch.
I obviously don't know what her surgery will recommend to us but I would not want her to go through spinal fusion as yet.
Stana
PS: I am a single mum too If you want a chat, drop me a line x
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  #12  
Old 6th October 2011, 08:51 PM
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clairabella68 clairabella68 is offline
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Default Re: Hi all, back again

Hi Karen

I will PM you. Claire xx
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  #13  
Old 6th November 2011, 02:02 AM
Karenphillips Karenphillips is offline
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Smile Re: Hi all, back again

Hi all
We have our pre anaesthetic checks for Imogen at queens medical next week. Surgery going ahead!

Also in hospital having heart scans on Tuesday, looking for marafans.

Anyone know anything about it? X
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  #14  
Old 6th November 2011, 06:19 PM
Lizz Lizz is offline
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Default Re: Hi all, back again

Hi Karen,

Firstly, there's a very good chance they will find nothing untoward at all at your daughter's heart scan on Tuesday - so do bear that in mind.
From what I understand they are looking for dilation of the Aorta, the main artery that comes out from the heart and goes down through the abdomen.
The usual place to find dilation is the ascending part of the aorta, right near to the heart.
If it is just slightly dilated they will simply monitor it. If it is a bit more dilated there are drugs that can be taken to try to stop it getting any worse.

But remember - it's probably fine!!!!!

Do let us know how it goes.

Thinking of you,

Liz
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Liz, mum to Alex aged 14, had surgery December 2011 at RNOH under Mr Tucker. Fused T2 to L1
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  #15  
Old 13th November 2011, 04:13 PM
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tonibunny tonibunny is offline
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Default Re: Hi all, back again

Hiya,

I was fused from T1-T12 (entire thoracic spine) when I was ten years old, and I was 132cm tall at the time of the surgery. I'm now 5'3 tall (and I would be taller but I do still have fairly large residual curves of 45/35 degrees) so having a fusion at 10 didn't have any significant impact on my height. I look like I have fairly long legs for my height, but that's a bonus really

It's fairly common to have some degree of hypermobility, and associated problems like flat feet, with scoliosis. Occasionally it will be because someone has a Connective Tissue Disorder that can be confirmed (eg Marfans or EDS) but very often it is due to general hypermobility syndrome. Hopefully the heart scan will help put your mind at rest.

love,
Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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