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  #46  
Old 2nd June 2010, 10:53 PM
Rachie's Avatar
Rachie Rachie is offline
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Default Re: Insertion of growth rod

Quote:
Originally Posted by Pod4300 View Post
i am 8 and i am having a growth rod installed on june 21.i am scared and unsure of what i will be able to do afterwards. i am a dancer and a cheerleader so i hope to return to it one day.they say i might have to be home schooled for awhile which is ok.my family is the scaredist i think.how is her every 6 month surgery going?Is she up to full speed as before?
Welcome to Scoliosis Support. Maddy wasn't much into dancing before her operation but she has done a few bits in school. She needs to be careful with the activities she does, mainly with landing heavily, eg she can't do long jump as this may cause the rod to break. (A broken rod is easy to replace but it's an extra operation that I'm sure you would rather not have.)

The lengthening operations are very quick. Maddy is able to go home by train the next day and is back at school within the week. She doesn't even need painkillers, but everyone is different.

If you haven't already done so, please tell your parents that you have joined this site.

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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  #47  
Old 9th February 2011, 04:28 AM
dcintron dcintron is offline
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Default Re: Insertion of growth rod

Hi, I am new to the support group and have a 4 year old with a 40 degree curve in her thoracic area. I am looking for any info on what to expect and it looks like you and your daughter have been through a lot. It scares me and gives me hope reading your story. My question is when was your daughter diagnosed and how did it progress until they decided for surgery.

Thank you
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  #48  
Old 9th February 2011, 09:29 AM
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Rachie Rachie is offline
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Default Re: Insertion of growth rod

Hello and

My daughter had uneven shoulder blades very early on, ie I probably noticed it at age 2, but my husband would say "oh that's just her" and I would be happy to be in denial. It wasn't until she was 4 that I mentioned it to my GP when I was there for something else. He got her to bend forward and his eyes nearly popped out of his head when he saw her uneven back! He immediately referred her to an Orthopaedic Surgeon who referred her on to a Spinal Surgeon at Guy's Hospital in London. At this stage her curve was about 76 degrees. His strategy with children was to just watch and wait, so it was only when he left and a new Surgeon saw her when she was 6 that growth rod surgery was recommended. We asked for a second opinion and were referred to Great Ormond Street Hospital where the same surgery was recommended (the only alternative being aggressive Milwaukee bracing). We felt secure at GOSH and asked to be transferred there because they had a growth rod programme up and running. Had we been referred there when Maddy was 4 I am guessing that she would have been plastercasted for a few years before surgery. This is where every few months the child has a general anaesthetic and the spine is pulled into a better position. A plaster cast is put on to keep the spine stable to allow for growth. This can be very successful or not work at all. Growth rod surgery and plastercasting are used to buy the child enough time to grow before spinal fusion. Some doctors say that 50 degrees is the point at which surgery will be required, others say 30 degrees. It was thought that curves would not progress into adulthood but there are people on this website who have required surgery in later life because their curves did progress.

It is very scary to be told that your child has scoliosis, but I am glad we are on this road so that she has the best possible chance of having no problems into adulthood.

Where in the world are you? Which hospital/consultant are you under? What have they said are the treatments options?
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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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  #49  
Old 9th February 2011, 11:24 AM
dcintron dcintron is offline
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Default Re: Insertion of growth rod

We live in Chicago. Her doctor is Erik C. King. Here is his bio. we just met him yesterday and he is very positive and caring, but I am still scared to death. Today we have her ultrasound for her kidneys. I am praying that they are ok. You couldn't tell anything was wrong with her only for right shoulder was popping out a bit. She was actually constipated and took an xray of her stomach and that set the alarms off. I have had back problems since I was 17. With multiple herniations L4-L5-S1. After 3 microdiscetomy surgeries and then a fusion last year at L4-L5 I am feeling pretty good. I don't want her to go through having pain. I am so scared. The worst thing is just the waiting. You have been through a lot and am happy that your Family is pulling through. It gives me strength to hear peoples stories. Thank you so much for responding.

http://www.childrensmemorial.org/dep...x?doctorID=736
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  #50  
Old 19th February 2011, 04:03 PM
Alexandersmom Alexandersmom is offline
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Smile Re: Insertion of growth rod

Rachie,
I'm new to this site, but wanted to thank you so much for your detailed information of Maddy's surgery. It was so helpful to me & I'm sure to many others on the Scoliosis journey with their child(ren).
Here's my story: I have an 11-year-old son who underwent Vertebral Body Stapling at Shriners Hospital in Philadelphia, PA in August 2007. The staples may have slowed the progression a bit, but we go back to Shriners this Thursday for more x-rays 4 months after his last visit to compare as his primary thoracic curve is now in the 60 degree range. His MD says that VEPTR will not work with his age, but that he has a lot of growth left & is recommending a growth rod instead if his curve(s) progress any further. Probably fusion later in life once he's finished growing.
Anyway, thanks again & I hope that Maddy continues to do well!
Alexandersmom
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  #51  
Old 19th February 2011, 06:51 PM
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Rachie Rachie is offline
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Default Re: Insertion of growth rod

Thank you. I wrote it because I wished I'd had more of an idea of what to expect before Maddy's op, so I'm glad it's helped you. This site helped me a great deal in the run up to the op and I recommend you hang around and ask all your questions. We're always pleased to help.
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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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  #52  
Old 19th February 2011, 08:32 PM
stana29 stana29 is offline
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Default Re: Insertion of growth rod

Hi Rachie,
How long was Maddy off school after her surgery?
Thanks x
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  #53  
Old 20th February 2011, 04:50 PM
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Rachie Rachie is offline
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Default Re: Insertion of growth rod

It was about 6 weeks, then she went back for a few half days before going back full time.
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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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  #54  
Old 21st February 2011, 11:26 AM
stana29 stana29 is offline
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Default Re: Insertion of growth rod

Yeah they just told us 6 weeks - that's a long time to be stuck at home ;-)))) We are both going to get dead bored ;-) xxx
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  #55  
Old 21st February 2011, 11:36 AM
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Rachie Rachie is offline
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Default Re: Insertion of growth rod

Jessie's school should contact the Education Authority who have a duty to provide education for pupils in such circumstances. We had a tutor come once a week to the house (there were supposed to be 2 coming but the Maths one never showed!). It was a change of face and she kept Maddy's interest in books, art, etc, and she also collected some work from the school so that Maddy could keep up.
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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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  #56  
Old 21st February 2011, 01:37 PM
DeborahBen DeborahBen is offline
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Default Re: Insertion of growth rod

Having just gone through this I have some advise if it helps? My Son's school arrange a home teacher whilst he was recovering. Oliver had his operation on 15th December and has been at home ever since. He is returning to school next week, first week half days and then full time from the following week (if he can cope) The home teacher (through the LEA) has come for six hours per week and I have to say that Oliver has really prgressed well on the one-to-one. The home teacher spoke to his teachers at school so they ensured that he was keeping up with this class friends. The home teacher will only concentrate on maths and literacy but I filled in the other lessons. This term they have been working on World War II so we went to the imperial museum and worked on the project trying to make it fun. I handed in his work every week and picked up new work for him. As he is due to go back we I have taken him back to school just to do maths one week and literacy the other just so he can mix with the other children again but just limiting this to an hour. I also made a huge effort to have a friend over firstly just one a week and then as he improved twice a week. After his operation he was a little down and didnt want to see anyone or do anything but this has improved greatly now. We saw Mr Tucker this morning and he confirmed that Oliver can return to school next week and start doing some light sport after Easter. Oliver has put on weight from being so inactive and this is having an impact on his confidence. I wanted the operation now as it gives him time to improve his posture and body confidence before he started senior school in September so he can start a new school a fresh without anyone knowing what he has been through. The brace is hard going but he does feel safe whilst he is wearing it. So we have got through the first stage, meaning surgery and first stage of recovery. The next stage is getting him back to school and coping with every day life and me coping with letting him go! The next stage is improving his posture with lots and lots of physio and back to sport and general fitness. Our next appointment is the end of May with a CT scan to confirm that fusion has taken place. Good luck to you all x
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Mummy to Oliver aged 10. Failed spinal fusion at Standmore 09 second surgery on 15th Dec 10 at GOS with Mr. Tucker.
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  #57  
Old 21st February 2011, 04:12 PM
stana29 stana29 is offline
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Default Re: Insertion of growth rod

Thank you for your answers. When I asked Jessie's school in regards to this they told me it's the hospital that has to arrange it and hospital is telling it's the school. They are on half-term now but I will still email them to arrange it for Jessie and I will call the LEA myself. I am dreading for her being off school for so long - I always did a top up for her after school especially math but she doesn't like learning with me as apparently I am too strict. I am also teaching her another language and she is fully fluent but it's all hard work - I have to think of ways to make it fun for her but a teacher would be a godsent for us.
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  #58  
Old 22nd February 2011, 06:11 PM
DeborahBen DeborahBen is offline
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Default Re: Insertion of growth rod

Dear Stana, it is the school that should arrange it for you, but as always you have to keep on at the them! my school has been fantastic and as this is our second time I am used to the process. I believe (not sure if other authorities are different) that each child should have six hours a week of home school. It is really hard work for parents to home school as we become everything to our children, mother, nurse, physio, best friend.... so I believe that we are too close to be the teacher as well and someone from the outside works best (they also gain respect from our child) I set up the spare room as a sort of school with a white board so we could have a school room and the rest of the house was home. On bad days we used to lay in bed together reading books! The internet is great and the BBC has the best key stage websites. My father bought Ollie a lap top so he has worked really well on his typing skills. The local OT came to the house for a house visit and arrange all the equipment that we needed for when Oliver came home. Our physio arranged hydro swimming at the local hospice for Oliver for when he was able to start hydro therapy. My GP was great support, I saw him just before the operation and told him that I was left to cope on my own last time, this time I wanted him to make sure that I was well supported and I have to say he did step up this time. You must be exhausted at the moment, I am sure that the school or LEA will get the teacher sorted. I am so pleased that all is going well, Jessie is really really beautiful and I send you our best wishes to a good recovery x
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Mummy to Oliver aged 10. Failed spinal fusion at Standmore 09 second surgery on 15th Dec 10 at GOS with Mr. Tucker.
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  #59  
Old 22nd February 2011, 08:56 PM
stana29 stana29 is offline
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Default Re: Insertion of growth rod

Hi DeborahBen,

Jessie's school is on half-term this week so I will sort it out next week, meanwhile I will start with some teaching.
We never saw any OT whilst in the hospital and only saw physio few times - they never managed to wash her hair and I doubt we will be able to use some hydrotherapy pool nearby.

I feel like the management of the aftercare is not great through GOSH but they said they will be contacting our local physio.

Did Ollie have rods or fusion?
What equipment did he need at home?
xxx
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  #60  
Old 22nd February 2011, 10:20 PM
andrea andrea is offline
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Default Re: Insertion of growth rod

I just wanted to say that for us it was the hospital that sorted the home-ed out and then we were contacted by our local hospital that sent out their school teachers. It was brilliant for us and gave me a couple of hours with my (then) baby while Erin did some work.

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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