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Thread: Insertion of growth rod

  1. #61
    Join Date
    Jul 2010
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    South of England
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    118

    Default Re: Insertion of growth rod

    Dear Stana,

    There was not really a programme of aftercare from GOSH. The physios there were great and made sure that Oliver could walk a little in the brace before leaving and helping him to get in and out of bed. Lisa was great and arrange the brace and made sure it was correct before we left. The OT came round and showed us how to use the bath board and walk up and down the stairs. We were in GOS for nine days but he did not get out of bed until day five. The muscles in Olivers legs were very weak so he was not able to walk very well. Mr Tcuker thought that Oliver might have to be in a spicer brace which means that the legs are fixed, this would have meant that Oliver would have been bed bound for the full three months recovery so I was keen to have his bedroom ready for this. Tucker would not decide until during surgery and as we were due to leave GOS on 23rd December it was important we were ready for any outcome. In the end he was lucky just to have the spinal brace so he was able to use his legs. The equipment we had at home was a medical bed that could be lowed and raised, a bath board, wheelchair (until Oliver could walk better) a brace of course, a perching stool for the table, a special toilet which meant he didnt sit too low, a hospital table and a grabber to pick things up. The community OT (through children services) arranged for this to be delivered just before we came back from GOS. We did have the surgery privately and I know this makes a difference to what GOS will offer afterwards (very little). As this is our second time in just under two years I was a bit more savvy on what I knew I would need in place. As I said, the LEA sorted the home school and there should be someone working during half term. Oliver had a spinal fusion in August 08 but the metal work broke and he has been in a lot of pain for the last eighteen months whilst they did many scans and bones scans deciding on the next course of action and his posture is very poor which has a huge impact on his life. The second surgery in December seems to be going well but this will not be confirmed until he has his CT scan at the end of May. I wish I had found Tucker the first time around as I have only heard great things about him. Panos (the greek chap) was lovely while we were is GOS. If you have good GP then I would suggest asking them to make arrangements as well to take some of the stress away from you. The first part after surgery is tough and I understand that Jessie has already had a very hard time (and you guys) but it does get easier week by week. We are now 10 weeks today post op and most of the equipment is out of the house, life is slowly returning to normal and Oliver is due to return to school part time next week. He has been at home for the last four months so this is a big step. We know it will be a year before life is totally normal but I am feeling positive. Deborah x
    Mummy to Oliver aged 10. Failed spinal fusion at Standmore 09 second surgery on 15th Dec 10 at GOS with Mr. Tucker.

  2. #62
    Join Date
    Jul 2010
    Location
    South of England
    Posts
    118

    Default Re: Insertion of growth rod

    In regards to hydro, the local physio arranged this. They have an agreement with the local hospice to rent the pool once a week for the children needing it in the community. There are not many hydro pools around now as funding is so low. My GP refered us to the community physio and OT department at our local hospital. It might be worth calling your local hospital and asking them about the community children services. I have learn that nothing happens unless you ask for it, it is a shame that we have to push for these services but they are out there and you and Jessie should have the use of them but it does take some investigations to what is there. First port of call, GP then local services.
    Mummy to Oliver aged 10. Failed spinal fusion at Standmore 09 second surgery on 15th Dec 10 at GOS with Mr. Tucker.

  3. #63
    Join Date
    Jan 1970
    Location
    London
    Posts
    322

    Default Re: Insertion of growth rod

    Hi,

    I spoken to LEA today and they told me that GOSH should have written a referral for Jessie's home tuition but it seems that they didn't so she wrote an email to the Islington Home School team about Jessie today but she thinks that these things take a long time and Jessie might not get help in time.

    I will definitely do the home education with Jessie and I am actually looking forward to it now as I always did some work with her at home - I just need to learn to be more patient with her and not expect her to know it all straight away ;-) I actually think she might even learn more with me than at school

    I will speak to Jessie's school as they actually have the hydrotherapy pool as they have 80 special needs children as they are 3 school together - primary, early learning and special needs children.

    Jessie seems pretty good at the moment - she walk around the house like nothing happened ;-)

    Our children are simply amazing, aren't they?

    Thank you for all your inputs.

    Stana x

  4. #64
    Join Date
    Jul 2010
    Location
    South of England
    Posts
    118

    Default Re: Insertion of growth rod

    They are completely amazing, I am so proud of Oliver and how he has dealt with everything. Poor show of the LEA and they should have bank of school teachers ready to step in for the many number of children that are unable to attend school. If you are going to home school yourself then have a meeting with Jessie's teacher next week. Ollie's maths teacher set his maths work for the week so it was all in line with the rest of the class (same for literacy). I used to collect it on a monday and he came in to say hello to his friends and then take it back the following week and collected more. I have to say that he has improved greatly on the one-to-one work. We also laid in bed and read lots of books which has really improved his reading and enjoyment of it. As I said, the BBC websites do some great key stage work which is also fun. The typing practice is great!. Lots of free museums for when Jessie is feeling up to it, and being in term time should be nice and quiet. I also sent an email to all my friends asking for recommendations of places to visit which was great. Stana dont put lots of pressure on yourself, Jessie will catch up if she misses anything. Also when you condense the amount of actual work they do at school then an hour a day is about right, Ollies teacher told me this! Enjoy the time off together, I really have and feel quite sad about returning to work and Ollie returning to school but glad we are on to the next stage. The time off together had been wonderful and I have loved learning with him and reading books and just standing still for five mintues as we are normally rushing around everywhere, it does go by very quickly. GOS did not do any refereal for us but Ollies school was very good and the SENCO lady there arranged all that I needed. I called the community OT last week and asked her to visit Ollie at school next week to make sure that he is supported back in the classroom and able to get around the school safely. Make sure you get some rest as you also need to recover from the last few weeks, stress takes its toll on us parents. Please let me know if I can help in anyway with anything. The support on SS is amazing and been wonderful for me and Ollie receiving support from other parents in the same postion. Wishing you all the best. x
    Mummy to Oliver aged 10. Failed spinal fusion at Standmore 09 second surgery on 15th Dec 10 at GOS with Mr. Tucker.

  5. #65
    Join Date
    Jan 1970
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    Kent
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    1,526

    Default Re: Insertion of growth rod

    Great news that Jessie is doing so well.
    Mum to Maddy aged 15. 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.

  6. #66
    Join Date
    Jan 1970
    Location
    London
    Posts
    322

    Default Re: Insertion of growth rod

    Hi Deborah,

    Jessie was diagnosed with cancer in December 2005 and ever since I feel like I am constantly searching for people to help, calling everyone, doing it all myself as I agree with you if you don't ask you don't get it. I kind of got used to it over time but obviously the post spinal surgery issues are new to me so again I am learning as how to help her the best.

    I actually believe that Jessie will be ready to go to school earlier than in 6 weeks but it all really depends on the doctors giving us all clear to go.

    Thank you for you help xxx

  7. #67
    Join Date
    Jan 1970
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    Kent
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    Default Re: Insertion of growth rod

    Quote Originally Posted by stana29 View Post
    I actually believe that Jessie will be ready to go to school earlier than in 6 weeks but it all really depends on the doctors giving us all clear to go.
    When Maddy had her growth rod put in Mr Tucker came to see us in the Recovery Room and said that for 6 weeks she has to take it extra carefully. So I'm guessing there is something about the 6 weeks and things settling or sticking, etc. So even if she seems ready earlier if they say 6 weeks I guess it's for a reason.
    Mum to Maddy aged 15. 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.

  8. #68
    Join Date
    Jan 1970
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    Kent
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    Default Re: Insertion of growth rod

    Here is a small sized growth rod. Maddy's was bigger than this.

    Mum to Maddy aged 15. 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.

  9. #69
    Join Date
    Jan 1970
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    Kent
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    1,526

    Default Re: Insertion of growth rod

    As this thread is still looked at by new people I thought it would be helpful to provide an update on Maddy’s journey.


    Maddy had her first surgery 8.5 years ago and her last surgery 5 years ago. Details of her last hospital stay can be found in this thread:


    http://www.scoliosis-support.org/sho...ame-Experience


    Maddy is approaching her 16th birthday. She is 5ft 2ins (157cm) tall and weighs 7 stone (45kg). She continued to grow in height following her last surgery to fuse her spine. The last 5 years have had their ups and downs. It took her a good 1.5 years to put sufficient weight on after her 3 weeks in hospital which included two surgeries and 13 days in traction. She took up sailing which she loves (and is good at!). She did not experience back pain until 2 years ago but it is minor and seems to be muscular. She has also been experiencing increasing pain in her knees. She has always walked a bit like Bambi with stick thin legs that wobble. After seeing many physiotherapists (who only diagnosed weak muscles) and finally getting a referral to Rheumatology at GOSH, Maddy was diagnosed with tibial torsion, ie her tibias had grown twisted (as well as her spine!) so her bio-mechanics are terrible. She has never used her body efficiently to move so some muscles (mainly the endurance ones) were virtually non-existent. She was using her power muscles all the time and they were finally protesting. Last year she spent 3 weeks having intensive physiotherapy at GOSH and is now following a programme of exercises at home. She finally has shapely legs! She still gets knee pain and her walking, though different, still isn’t great. But she is not finished yet.


    In terms of her back, she has a spinal appointment in January 2017 when the consultant hopes to discharge her.


    I would like to say something to encourage parents who are worried about what their child is going through. This whole journey I wouldn’t wish on anyone, but Maddy’s character has been shaped in such a wonderful way. The years of not being able to take part in things has meant she now throws herself into lots of things with gusto…even if she knows she will pay for it with knee pain afterwards! For example, she did a two-day canoeing expedition for her Duke of Edinburgh Bronze Award, after which she was laid up for a couple of days, yet she is now planning a three-day one for her Silver Award (and she has her sights set on Gold!). She is very driven. She is about to take her GCSEs in which she is predicted to achieve As and A*s in most subjects. She loves science and wants to be a doctor. Having seen how she kicked and screamed at most things during her hospital stays this astounds me yet makes me so proud. If anyone will be able to relate to her patients it will be Maddy. And she is a compassionate person who is inclusive of others. She knows people can have struggles which aren't always obvious to others.


    She reminds me of the legend who was Toni. I never met her but I got the impression it was her life experiences that shaped her into such a wonderful person. Thank you Toni for being so instrumental in me surviving this journey. You are missed.
    Mum to Maddy aged 15. 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.

  10. #70
    Join Date
    Nov 2011
    Location
    UK
    Posts
    6,117

    Default Re: Insertion of growth rod

    Quote Originally Posted by Rachie View Post
    As this thread is still looked at by new people I thought it would be helpful to provide an update on Maddy’s journey.


    Maddy had her first surgery 8.5 years ago and her last surgery 5 years ago. Details of her last hospital stay can be found in this thread:


    http://www.scoliosis-support.org/sho...ame-Experience


    Maddy is approaching her 16th birthday. She is 5ft 2ins (157cm) tall and weighs 7 stone (45kg). She continued to grow in height following her last surgery to fuse her spine. The last 5 years have had their ups and downs. It took her a good 1.5 years to put sufficient weight on after her 3 weeks in hospital which included two surgeries and 13 days in traction. She took up sailing which she loves (and is good at!). She did not experience back pain until 2 years ago but it is minor and seems to be muscular. She has also been experiencing increasing pain in her knees. She has always walked a bit like Bambi with stick thin legs that wobble. After seeing many physiotherapists (who only diagnosed weak muscles) and finally getting a referral to Rheumatology at GOSH, Maddy was diagnosed with tibial torsion, ie her tibias had grown twisted (as well as her spine!) so her bio-mechanics are terrible. She has never used her body efficiently to move so some muscles (mainly the endurance ones) were virtually non-existent. She was using her power muscles all the time and they were finally protesting. Last year she spent 3 weeks having intensive physiotherapy at GOSH and is now following a programme of exercises at home. She finally has shapely legs! She still gets knee pain and her walking, though different, still isn’t great. But she is not finished yet.


    In terms of her back, she has a spinal appointment in January 2017 when the consultant hopes to discharge her.


    I would like to say something to encourage parents who are worried about what their child is going through. This whole journey I wouldn’t wish on anyone, but Maddy’s character has been shaped in such a wonderful way. The years of not being able to take part in things has meant she now throws herself into lots of things with gusto…even if she knows she will pay for it with knee pain afterwards! For example, she did a two-day canoeing expedition for her Duke of Edinburgh Bronze Award, after which she was laid up for a couple of days, yet she is now planning a three-day one for her Silver Award (and she has her sights set on Gold!). She is very driven. She is about to take her GCSEs in which she is predicted to achieve As and A*s in most subjects. She loves science and wants to be a doctor. Having seen how she kicked and screamed at most things during her hospital stays this astounds me yet makes me so proud. If anyone will be able to relate to her patients it will be Maddy. And she is a compassionate person who is inclusive of others. She knows people can have struggles which aren't always obvious to others.


    She reminds me of the legend who was Toni. I never met her but I got the impression it was her life experiences that shaped her into such a wonderful person. Thank you Toni for being so instrumental in me surviving this journey. You are missed.
    Maddy sounds like a mini Toni and I love it, as she would have. Maddy sounds awesome and I can't believe she's doing her GCSEs now!! Good luck to her, I'm sure she will do amazingly
    Hiya, I'm 19, my consultant's Mr Gibson at RNOH and I had my fusion in October 2012 and am now fused T2-T11 corrected from around 60T/40L to 30T/40L.

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