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  #16  
Old 30th January 2008, 12:31 PM
andrea andrea is offline
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It's really pleasing to see how quickly she has recovered Rachie. Following on from Sara's comment, do you know how flexible Maddy will be when the brace is removed? I only ask because Erin currently attends a dancing school and it'll be good to know whether she will be able to go back to this after the 3 months post-op are up?

When are your brace restrictions lifted?
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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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  #17  
Old 30th January 2008, 06:49 PM
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I have only spoken to the spinal liaison sister about this and she says that PE has to be done wearing a brace, so she can't do forward rolls and stuff like that. And she didn't think she could do anything like monkey bars as this pulls on the spine. She was a bit too vague for my liking so I will be keeping her off PE until I can ask a consultant exactly what is allowed. Swimming is definitely allowed (without a brace!) but no jumping or diving in.

When surgery was first mentioned I was given the impression that ballet would be allowed (without a brace) but Maddy stopped doing this about a year ago anyway so we haven't had to find out for sure.

I think growth rods are prone to breaking because they are only fixed at the top and bottom and so are subject to stresses that normal rods are not.

Sorry I don't know more. You should see a consultant at Erin's pre-op day so you can ask then.

How are you Andrea? I hope you are not feeling like a beached whale! I was thinking - I hope you have supportive friends/family on hand to help you after Erin's surgery as you will be physically knackered and your hormones will be all over the place after the baby arrives.

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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  #18  
Old 30th January 2008, 06:55 PM
andrea andrea is offline
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Thanks for the reply Rachie. I'm doing ok - feeling very much like a beached whale. Even a stranger stopped me in the street today to say she sees me every day and I'm enormous. Gee, thanks..... I thought i was doing well at only having put 2 stone on!

My sister lives down the road and my mum has already booked lots of time off work to give me a hand post-op. I'm not so worried about once we're home (perhaps I should be?), but more how i'm going to manage in the hospital as I don't want to be away from either of them but know i'm going to have to be realistic about how much I can manage without accepting help (i'm not very good at that). I was also planning on b-feeding, so don't know how that will work if i'm not around the baby very much.

Anyway, this is turning into an essay....thanks again
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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  #19  
Old 30th January 2008, 09:18 PM
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Perhaps a good solution for the early days to allow you to have the baby with you much more often (and allow discreet and easy breastfeeding) would be to use a sling? I can get more information on them for you from devotees who know a lot more than I do I didn't use one simply because I'm already pitched forward, so to add nearly 10lbs of baby to that (I know that the bump weighed more, but that was also attached differently!!) just wasn't going to work for me, but most people find them fantastic. (If we do have another I'll try to ensure I'm strong enough, and I'll have had my revision-of-revision by then too, so should be upright, so plan to use one)

Also, just don't listen to people :P Some said I was huge, others said I was carrying really small, and all in all I came to the conclusion people didn't know what on earth they were talking about!!
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Diagnosed at 15 with 50 curve, but probably juvenile IS. Fused in kyphosis (by non-specialised ortho) with a/p surgery T10-L2 @ 21, posterior only revision surgery to correct kyphosis @ 29. Now 38 with further revision surgery and extension of fusion to sacrum required to correct residual kyphosis, restore lordosis and address spinal stenosis.
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  #20  
Old 31st January 2008, 09:52 AM
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When we were in GOSH a little boy was having his rod lengthened and his mum had a new baby. The dad stayed in hospital at night and the mum came in with the baby during the day. But I know you won't want to be away from Erin for a second. Is there parent accommodation nearby so you could sleep away from the ward but be close enough to get there quickly if you need to? GOSH has it's own hotel opposite for special cases.

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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  #21  
Old 1st February 2008, 02:46 PM
andrea andrea is offline
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Thanks ladies

Titch - i have an Ergo sling, although hadn't considered using it in hospital - that's a very good plan. I don't know whether they're any good, but they don't hang the baby by the crotch like others, and i'm taking no chances this time round!

Rachie - i think this will be our plan too. dh there at nights and me there during the day while he goes and sleeps. They do have an accommodation block, but last time I used it it was pretty grim. If it's too bad, we'll get a room at a local hotel so her can sleep during the day and and I can sleep(!) at night.

I just need this baby to come out now!
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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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  #22  
Old 2nd February 2008, 11:06 AM
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Andrea,

This would be my advice about the night times in hospital - so please tell your hubby! If I was going through this again I would make sure that I told the nurses to wake me if they were going to give Maddy any medicine or do anything to her so that I could know exactly what they were doing. (I'm not talking about general obs) We had an "incident" where the nurse made a mistake and gave Maddy her antibiotic as an IV through her cannula rather than orally. I was woken up by Maddy's crying but it was too late it had already been done. There was an awful few moments when the nurse admitted her mistake but I had no idea whether she had given her something that would hurt her! Anyway it turned out to be the correct drug and the correct dose, the nurse just failed to notice that she was now having that drug orally. I am in the process of complaining to the hospital. I don't blame the nurse. There were 2 nurses on duty to cope with 9 patients just because it was a Sunday night. Medically there should be no difference to any other night when there were about 5 staff on duty. The only reason I can see for this is that it costs more money to employ staff on a Sunday night. One day a worse mistake might happen.

I'm not saying this to scare you. But you need to make sure she is getting the right treatment.

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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  #23  
Old 20th June 2008, 04:54 PM
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familiar story Rachie. Meg didn't want her pain killer so the nurse left it by the bed!!! told her to take it later. Then when she wanted some they wouldnt give it to her because the nurse had signed for it saying she had had it!!!!!! Needless to say both Meg and i were not happy bunnies, they gave her some in the end as she was crying. Hr later night shift and another nurse tries to give her more!!
It seemed like everytime Meg settled and got to sleep they woke her for something!

Also Megs puffers disappeared from the drugs cabinet!



ooooo lots of stories to tell from the pasts years!


Meg is under Mr Tucker too. Lovely man. Meg reckons he's tastey lol oh goodness me and she's only just 13!!


I've never left Meg slept on a chair even in ITU


Lv to all
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  #24  
Old 20th June 2008, 05:00 PM
Mrs P Mrs P is offline
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Default Re: Insertion of growth rod

Quote:
Originally Posted by Rachie View Post
Andrea,

This would be my advice about the night times in hospital - so please tell your hubby! If I was going through this again I would make sure that I told the nurses to wake me if they were going to give Maddy any medicine or do anything to her so that I could know exactly what they were doing. (I'm not talking about general obs) We had an "incident" where the nurse made a mistake and gave Maddy her antibiotic as an IV through her cannula rather than orally. I was woken up by Maddy's crying but it was too late it had already been done. There was an awful few moments when the nurse admitted her mistake but I had no idea whether she had given her something that would hurt her! Anyway it turned out to be the correct drug and the correct dose, the nurse just failed to notice that she was now having that drug orally. I am in the process of complaining to the hospital. I don't blame the nurse. There were 2 nurses on duty to cope with 9 patients just because it was a Sunday night. Medically there should be no difference to any other night when there were about 5 staff on duty. The only reason I can see for this is that it costs more money to employ staff on a Sunday night. One day a worse mistake might happen.
I'm not saying this to scare you. But you need to make sure she is getting the right treatment.

Rachie x
Like thinking a child is sleepy and breathing funny because of having surgery and being under the anaesetic for so long, when actually the child was drifting in and out of consciousness! good job mum and dad were there!
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  #25  
Old 13th August 2008, 06:09 PM
Chantelle-Clay
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Unhappy im having a opperation

im chantelle clay age 11 i am havin the same opperation as maddy soon i am very worried about it could you tell me more about it and also could u assure me it is a safe opperation and benificial for me in long term and how much pain would i be in?
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  #26  
Old 13th August 2008, 06:18 PM
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Default Re: Insertion of growth rod

Hi Chantelle, welcome to sso, no surgery is without a certain amount of risk but this is kept to a minimum as you will have someone monitoring your spinal cord the whole time, i read somewhere that the risk of spinal cord damage is less than one percent,

If you have any questions then do hesitate to ask we are a friendly bunch who just want to help and support one another

Where are you having your surgery
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  #27  
Old 16th August 2008, 06:25 PM
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Default Re: Insertion of growth rod

can u tell me how long you were in hospital for and how much pain you were in and are you glad you had it done and i am havin it at frenchay hospital in bristol i am waitin for the date and i got to have a ct scan and a mri scan i might have to have my operation befor christmas or new years
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  #28  
Old 23rd August 2008, 11:40 AM
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Rachie Rachie is offline
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Hi Chantelle,

Sorry for the delay in replying, I have only just read your message.

Are you sure you are having a growth rod inserted rather than spinal fusion? I only ask because we expect Maddy to have spinal fusion around the age of 11. But if they expect you to do a lot more growing then I suppose they would use a growth rod for a while.

With this op the pain felt is different for each patient. They do have fantastic pain relief though and you will have a button to press for more shots of morphine when you need it. And don't worry it is set so that you can't overdose yourself!

I won't pretend that the first few days are easy because they are not, but as soon as they are over the progress is fast and you should be home between one and two weeks later. Although she was only seven when it was done (and she is a complete drama queen!) Maddy says she is glad she had it done.

She has the rod lengthened every 6 months and this requires just one night in hospital.

It must be scary for you to have to face this op but all the kids I've heard of having it done have all done really well. The risks of damage to your spinal cord are tiny (less than 1% I think). There is a risk that the rod can break (6%) during the whole time you have it, but this is not that serious but it will obviously need to be replaced.

When is your op?

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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  #29  
Old 23rd August 2008, 08:46 PM
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Default Re: Insertion of growth rod

i am havin a scan in two weeks which will tell me what i need done but my fear is tablets so i dont no what they will do what is the difference between a rod surgery or a spinal fusion surgery ?? thanks for writting bak x
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  #30  
Old 23rd August 2008, 09:10 PM
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Rachie Rachie is offline
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Growth rods are put in children who have more growing to do. It keeps the spine relatively straight until they have grown sufficiently. The rods are lengthened every 6 months then, when most of the growth has occurred, they have spinal fusion. Spinal fusion is where they get the spine as straight as they can and fix with rods and screws. There shouldn't be a need for further surgery after that one.

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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