This discussion has been closed.
Posted by madmum2816 (U13850009) on Tuesday, 12th January 2010
Congratulations to Ria who is coping brilliantly. So glad to hear everything went so well. She will go from strength to strength now. It is amazing how quickly the recovery period is and before you know it life is back to normal.
Cameron sends his best wishges to Ria too.
Keep us posted on progress.
Tracy and Cam xx
Posted by christine (U10806837) on Thursday, 14th January 2010
Fantastic news about Ria. So glad everything went smoothly. She done amazingly well to get out of hospital so quick.
Best wishes to you all.
Christine (Emma's Mam)
Posted by suelucy94 (U13851571) on Tuesday, 19th January 2010
Hi Bernadette and Ria
It has all gone so well for Ria- it's lovely news! She doesn't need a brace either!
I know what you mean about her back being beautiful - you can't stop looking in amazement can you?!
Carry on doing so well Ria!
Sue and Lucy
Hello to everyone on this site- hope you are all ok! x
This posting has been hidden during moderation because it broke the House Rules in some way.
Posted by madmum2816 (U13850009) on Monday, 22nd February 2010
Just back from Cameron's 6 month check up at Stanmore. All going well. Had an xray and it looks good. He gets some neck pain due to the high level of instrumentation and fusion but we are told it should improve. He is able to have some osteopathy on his neck. No pain in his back and the scars are fading.. He cannot have any plastic surgery on the top part of the scar for a couple of years because of the risk of infection getting into the bone graft.
The op seems such a long time ago but every time I see his xrays it brings a lump to my throat. The next big challenge are his GCSE's in the spring - they seem to be scarily near!!!
Hope everyone is well.
Tracy and Cam xx
Posted by christine (U10806837) on Saturday, 27th February 2010
Glad to hear everything is going OK for Cam. Emma too has problem at top of spine but just a case of watch and wait to see how it goes. Consultant said if it doesn't cause too many problems to leave for now.
GCSEs scary - Emma in year 9 and choosing options. Now has the stress of changing schools as her school doesn't offer choices she needs for career she wants. Actually doesn't offer much for anyone, lol.
Christine, Emma and Megan x
Posted by SimoneIcough (U14395345) on Monday, 22nd March 2010
We met on my scoliosis support group, I hope the petition is going well, I am still running a link to this
I hope you are all well and take care
Posted by christine (U10806837) on Friday, 26th March 2010
Yes, petition still going strong. Thanks for running the link still, it really makes a difference.
Still read your messages with interest.
We are all very well, Emma doing great, 3 year post op anniversary at the weekend, time flies.
Posted by suelucy94 (U13851571) on Tuesday, 20th April 2010
Hi Tracy and Cam
It's been a while since l logged on last. I'm so pleased that Cameron's 6 month check up went well. Seeing a post op x ray is amazing isn't it- l always look in wonder.
Best wishes and good luck for the GCSEs- not too far away now- l hope they go well.
We see Mr Tucker next month for a check-up. This time last year we were 2 weeks away from the op.
Hope everyone is well and best wishes to you all
Posted by madmum2816 (U13850009) on Wednesday, 21st April 2010
Loveley to hear from you and that everything is going well. It is amazing how time flies and at what a wreck I was this time last year. Lucy is nearly a year post op!!
Cam continues to do well. He has a nasty fungal infection and dry skin all over his back which is taking ages to go, but other than that no problems. He is working hard towards his GCSE's and is looking forward to going to Reading Festival in the summer (a reward). He even has a part time job for Saturdays and the holidays starting in June! Has also been accepted to 6th form college.
Say hi to Lucy. Take care
This posting has been hidden during moderation because it broke the House Rules in some way.
Posted by daniasmom (U14517840) on Monday, 14th June 2010
(Sue & Lucy,Tracy & Cam,Christine & Emma, Bernadette & Ria)
I came across this website last night, I read it all from page 1 to13.
Thank you all for sharing your stories, and posting updates on your children's medical conditions...it is definitely reassuring and informative for parents like myself who are looking for ANY source of information about Scoliosis and spine surgeries. I was looking for reviews about the Royal National Orthopeadic hospital, Stanmore when I found this site.
My daughter is 3 yrs and 10 month old, she has scoliosis, and due to have a surgery within months (haven't got an exact date yet!) at Stanmore. Mr. Noordeen is her consultant. I was hoping to know more information about him. But looking at all your positive experiences you had at RNOH it is really comforting to know that my daughter will be in good hands.
Tracy>>thank you for your practical advice about what to bring to hospital, was really helpful.
Thank you all again.
Posted by madmum2816 (U13850009) on Monday, 14th June 2010
Hello Mai and welcome to this thread.
When I found this site I was desperate for positive information about scoliosis and its treatment. The advice and reassurance i got from Christine initially and then Sue was invaluable. It helped me and my husband (and, of course,Cam ) through a really bad and scary time. It was so good to hear about everyones experiences and outcomes to the treatment, and how life was continuing afterwards.
I am glad I am in the position to offer the same help and reassurances to new parents whose children are undertaking the scoliosis journey.
While Cam was at the RNOH there were some really young children having scoliosis surgery. There is a different part of the ward (called Coxon) for them. There are dedicated play specialists, DVD players etc, and the staff were brilliant - especially at coping with parental anxiety. The parent accommodation is excellent too - you must make sure you get some rest. I am afraid I do not know anything about Mr Noordeen, but you could try an internet search on him.
Please update us on how your daughter is doing, and also if there is anything that I can help you with.
Posted by madmum2816 (U13850009) on Monday, 14th June 2010
Hello again Mai. Hit the post button by mistake!! The above message is from me...
Posted by christine (U10806837) on Tuesday, 15th June 2010
If there is anything else we can help you with, please do not hesitate to write it down. It really does help to talk to others who have or are going through what you and your daughter are.
When Emma had surgery over 3 years ago now, there were also young children in and also a girl of about 10 who had her first operation when she was about 5.
You may find of interest a yahoo group called Scoliosisnutty, ran by an English girl who lives in Spain. It also offers great advice. She has just had some brilliant wristbands made to support people with scoliosis, worth checking out.
We wish you all the best for the future, please keep in touch and share your worries, it really is true when they say a trouble shared is a trouble halved.
Christine, Emma and Megan x
Posted by daniasmom (U14517840) on Sunday, 20th June 2010
Hi Tracy and Christine
Thank you very much for your replies. You can not imagine how every bit of information is so important.
Christine, it's good to know that other children as young as my daughter have made it through after the surgery (like the 10 year old girls you mentioned). I am not sure whether Dania will require another surgery when she's older or not...I've too many questions I need to ask the doctor, also I need to ask about if Dania will have to wear a brace after the operation.
Last update> 13th July Dania has to go for a paediatric pre admission clinic , were the nurse will have some pre-operative tests carried out.
Still no date for the operation yet!!
My little one is crying now, have to go, thank you again Tracy and Christine for all the support.
Posted by madmum2816 (U13850009) on Monday, 21st June 2010
Hello again Mai.
I found it really useful to write everything down. I got a file and put in every letter, appointment, question etc. It was really useful to have everything in one place and you have it ready when you need to make further appointments and if Dania needs any treatment in the future.
Another good website is Scoliosis Support. There are lots of mums with young children on it going through the same thing and everyone is really friendly.
Keep us posted.
Posted by suelucy94 (U13851571) on Tuesday, 22nd June 2010
I have just looked at the website and seen your message. I am so pleased that you found our posts reassuring- when we were told Lucy had scoliosis we were in shock and knew nothing about it. I was desperate for information and would spend lots of time on the internet - i just had a terrific need for information. This site was a great comfort to us and like Christine said- a trouble shared is a trouble halved. Whilst we have all never met, we all shared the same concerns and worries about our children, which l found so comforting as we were all in/or had been in the same position and understood what we were going through. I think you should google the name of your surgeon- you will get info on him. I have heard of him as Lucy had her op at Stanmore. Dania will be in safe hands there- everyone was so lovely and we had a very positive experience. I looked up info on the Scoliosis Support Group and anything else l could find. The parent accommodation is a minute away from Coxen Ward.
Please ask us any questions - between us all we may be able to help! Also write down questions for your surgeon as you think of them ready for the appointment. Keep in touch.
Lucy went for her 1 year check up at the end of May- Mr Tucker is very pleased with her posture and she had another xray. We see him now next May and that's it- fingers crossed. She is looking forward to work experience in a few weeks time and has done some GCSEs. Cam has finished now his exams l expect and has a long summer ahead of him! I hope all is well with him and l hope you are all well too. Thank you for being there when we needed you!
Posted by christine (U10806837) on Wednesday, 23rd June 2010
Definitely good idea to write everything down and also go prepared with your list of questions. It's amazing how something that has been praying on your mind will go out of your head when you get in front of the consultant. I always make a big long list beforehand. My other daughter Megan's paediatrician is so used to me now his face drops when I get the list out, lol.
SAUK good source of information, lots of different fact sheets and information you can send for. I, too, spent a lot of time on the internet researching trying to find out as much as I could.
Hello Sue - Great news about Lucy, can't believe it's a year ago.
Emma having physio at the minute, having a bit of trouble with the metalwork at the top of her spine, restricting movement of her head to one side, needs to stretch the muscles and remember to push her head back, has a habit of sticking her head forward. Also found that she's not breathing properly, got into a habit of breathing from the top of her chest, needs to breathe from under her diaphragm. She must have been doing this since before her op so she will need to persevere with the physio.
Hope everyone has a great Summer
Posted by madmum2816 (U13850009) on Wednesday, 23rd June 2010
Hi everyone. Its great to have an update on how you are all doing.
Glad Lucy is doing really well, and I hope the physio works for Emma. Cam also gets a bit of discomfort at the top of his spine and finds trying to lean his head back uncomfortable - especially on long journeys.
Cam has now finished his GCSEs and is quietly confident. He has accepted a place at 6th form college, but is mainly looking forward to a long summer, and going to Guilfest and Reading festivals!!! How different things are from a year ago when we spent a month at Stanmore. We are all also off to Wales in the summer to do some hill walking and relaxing.
Hope you all have a good summer.
Posted by rgb52 (U14495955) on Wednesday, 23rd June 2010
Good luck with your petition. However, Ischoolswe closely liaise with healthcare professionals but ultimately your GP should be the key professional involved in diagnosis. Schools can and are willing to particiapate in screening processes but children are only in school for 6.5 hours, 5 days a week and 38 weeks a years. So surely it is not the school's key responsibility? You as the parent see your child for far more hours than the school, therefore, why so you think school have this resposisbility? Soory if I ave misunderstood the post.
Posted by christine (U10806837) on Thursday, 24th June 2010
No-one has said that it is the school's responsibility to check for scoliosis but surely children are tested for other medical problems by a school nurse so why can't scoliosis be added to this list and checked at the same time.
Parents are not told about scoliosis and how to check your children for it. Apart from one magazine article I had never heard of it before Emma was diagnosed.
Emma has had problems since birth. She was born 5 weeks early with talipes (club foot), couldn't turn her head to one side and at the age of 6 months was diagnosed with congenital dislocated hip (after I voiced concerns). She had 3 weeks of traction and 6 months of plaster wearing and harness wearing. At the age of 4 she was discharged from the hospital as being OK. Her consultant classes her as a moulded baby (the way in which she was lying in the womb put extra pressure on her and caused problems).
The first thing I was aware of was a lump under Emma's shoulder blade which led me to take her to A&E as she had had a nasty fall that week. I am a very diligent and observant parent who was totally unaware of any change in Emma. Her consultant has said that Emma has probably had scoliosis since the age of 5 yet there were no outward signs until this hump appeared. How am I or any other parent who notices nothing supposed to catch scoliosis before it gets so bad that an operation is required.
If children were checked as part of a school programme or as a yearly check run by a GP then in the long term money would be saved. It costs a small fortune for a spinal fusion operation and the before care and aftercare. If scoliosis was caught early enough then some curves could be stabilised by bracing thus saving the NHS thousands of pounds.
Hope this clarifies the point for you and shows you that no blame whatsoever should be put on a parent for "missing" the scoliosis curves.
Posted by madmum2816 (U13850009) on Thursday, 24th June 2010
I totally agree with your message. As a midwife and ex-school nurse it makes complete sense for scoliosis testing to be implemented at school where children are seen by health professionals and health promotion is encouraged. So much input is out into sexual health, contraception, exercise and weight management, it would take minutes per child to do a yearly scoliosis check, or even to give children and parents the information so they know what signs to look for.
I am a pretty well informed medically but I still missed the early signs of my son's scoliosis.
Posted by daniasmom (U14517840) on Wednesday, 7th July 2010
I hope everyone is doing great, and enjoying the summer.
Sorry I haven't been very active lately. My husband and I have been busy sending Dania's medical letters, MIR scans,and x-rays to different doctors for second or if you wish third opinion.
We got a reply from a doctor in Germany who suggested that a VEPTR 2 (metal rod fitted to the back of the chest or spine) would be the solution to Dania's scoliosis. On the other hand, Dr. Noordeen at Stanmore is going to use growing rod. I am not too keen on the VEPTR device after reading many negative reviews on the internet.
We are waiting to hear from a professor in paediatric spine surgery in Switzerland . You might think that we have gone overboard ...but sometimes I think that I don't want to regret for not doing my homework, after all I only want what's best for my daughter.
I told my husband about this Blog, and how Cam went to a party before the operation, I thought we'd just do the same, and take Dania to fun places, because God knows when life will be back to normal again! We booked a week holiday to Dubai, I've searched all the kids attractions there, hope she will enjoy it.
Next week we are off to Stanmore for the check up tests prior to operation....forgot to mention we live in Manchester...we even considered moving to London to stay near to Stanmore...just in case any emergency happens after the surgery.
Because we don't trust that the medical surgeon here is capable to deal with the complex spine deformation, (he told us before the only thing we can do is to keep an eye on her for two years, he didn't think an operation would fix anything, he was so pessimistic and did not offer any hope to us (it was the worst day of my life).
That's when we decided to go for private consultation with Dr. Noordeen.
Hope you didn't get bored from my life story
Well, I wish you and your families all the best, and enjoy the summer...and World Cup Finals
Posted by madmum2816 (U13850009) on Thursday, 8th July 2010
I think you are doing what any parent of a child with scoliosis would do - find out as much about is as possible. It is an incredibly stressful time. I found a lot of the information on the internet very negative until I found this site.
There are many excellent scoliosis surgeons based in different hospitals all around the UK. Growth rods are very commonly used for young children with scoliosis - Dr Evans at Southampton uses (and developed) telescopic growth rods which extend with spinal growth and reduce the need for some extra surgeries to extend rods. The scoliosis surgeons see complicated cases all the time so they are used to dealing with complex surgeries.
Try and enjoy the time before Danias surgery - and have some nice things planned for afterwards. Something to look forward to really gives you a focus. Dubai is a fabulous place and you will have an amazing time.
If youhave any problems after Danias operation once you have been discharged from Stanmore the advice is to contact either the ward or surgeons team straight away. Most doctors do not like to interfere in an area they are not specialists, and the spinal surgeons are very particular in the treatment their patients receive. I hope you are coping with all the barrage of tests and appointments. Let us know how you get on and when Dania's op is.
Keep in touch.
Posted by daniasmom (U14517840) on Thursday, 8th July 2010
I really appreciate your advice, your words are comforting and reassuring.
I was just on Facebook, and found a group called "Scoliosis "How to Look Good Twisted", I signed Emma's petition.
Thank you again, I'll keep you posted.
Posted by madmum2816 (U13850009) on Friday, 9th July 2010
Have a look at Scoliosis Support - I am on the forum as 'madmum'.
Posted by christine (U10806837) on Saturday, 10th July 2010
Thanks for signing Emma's petition. The lady who runs the group "Scoliosis - How to Look Good Twisted" (Simone, an English lady who lives in Spain) also has a yahoo group - Scoliosisnutty and a website of the same name. Very good source of information and very helpful. At the minute you can buy support wristbands to help raise awareness and funds for SAUK. We've just got our white glow in the dark ones, I've never had mine off since I got it. Great idea.
Tracey is right, all the surgeons who carry out scoliosis surgery are very skilled and very competent. I would have every confidence in any of them. You are doing the right thing by gathering as much information as you can.
Remember to try and make time for yourself as well, don't wear yourself out. We all know how stressful it is and we are all here for you. Any help needed just ask.
Hope you have a great holiday and everyone on this forum has a super Summer.
Christine, Emma and Megan xx
Posted by daniasmom (U14517840) on Friday, 16th July 2010
Hope you are all enjoying the summer ,it's raining today )
Just a quick update, we have been to Stanmore for pre-op tests, the nurse "Vicky" was absolutely nice and offered a great deal of advice to us about what really happens before and after the operation.
Still waiting for a date...i will just call the lady who's in charge for booking and ask her if she can give a date, I doubt she would...!
Will keep you guys posted.
Congratulations for all the students for finishing this year, and good luck for the next one
Mai (Dania's mom)
Posted by madmum2816 (U13850009) on Friday, 16th July 2010
I hope you get a date soon!
I remember Vicky from when Cam was at Stanmore. We still see her when he goes back for check ups.
Enjoy what you can of the summer...keep us updated. Cam went to his first music festival yesterday - what a change from a year ago when he could even walk for long because of the back pain!!!
Posted by kary (U14571496) on Saturday, 31st July 2010
I have found this website enormously interesting and heartening. I live in South AFrica and my 19 yr old son has scoliosis. While he is not a candidate for surgery we are trying to ensure that the angle does not progress further. We have heard of places in the UK and Europe where they have a course of exercises to improve breathing and strengthen muscles. Can anyone give me any information, good or bad, about these places. If necessary we will send our son to the UK in December but obviously want to make sure we choose a place which has a good reputation. Can anyone on this site give me any advice?
Posted by madmum2816 (U13850009) on Sunday, 1st August 2010
The only place I can think of is Scoliosis SOS based in Martlesahm, Suffolk. They run courses called Scoliosis Gold which involves intensive physio and excercises. They run courses in London as well. I am afraid I do not know anyone who has done the course. My son's curve was too severe and needed surgery.
I would get in touch with SAUK (Scoliosis Association UK) who give lots of great information, as well as a website called Scoliosisnutty, run by a lady in Spain. There is also a useful forum called Scoliosis Support.
Hope you find what you are looking for, and good luck.
Posted by madmum2816 (U13850009) on Wednesday, 25th August 2010
Just to let you know that after a rocky start to the 2009 school year after his spinal surgery Cameron has done very well in his GCSE's.
He obtained 5 As, 5 B's and a C - not bad considering he was not fully back at school for 6 weeks. He is now off to 6th Form College in a couple of weeks for A levels.
I hope you have all had a good summer and everyone is fit and healthy!!
Love Tracy x
Posted by christine (U10806837) on Sunday, 29th August 2010
Well done Cameron, that's fantastic, great grades.
Hope everyone has enjoyed the summer.
Posted by suelucy94 (U13851571) on Tuesday, 31st August 2010
Well done to Cameron on his excellent GCSEs!! 6th form is now just round the corner and Lucy is going into year 11. What a difference a year makes!
Lucy is fit and well which is great. Last year's surgery gets "lost" in every day life now but if l sit and think about it all then it feels like yesterday- the anxiety and worry was awful but everyone on this site was so helpful and informative and reassuring-thank you all again!
We have had a great summer and hope you all have too!
Posted by Rachael_2010 (U14611051) on Saturday, 11th September 2010
I have found this forum after trawling through many websites, searching for some comfort/ reassurance as I just feel so alone with all this. Friends and family are great and are so supportive, but I don't think people fully understand unless they have been through it.
It was actually my mum who noticed that my daughter Lois (12) had a 'funny back' in July, she has a sister who has mild scoliosis. I couldn't believe i hadn't noticed it myself, having all of those guilty feelings some of you have mentioned. This was on a Saturday and on the Monday I was at the doctors asking to be referred to hospital. Apparantly there were no NHS appointments until at least September, which I couldn't wait for, so I rang a private clinic and got an appointment for the Thursday!! I tormented myself over the next few nights, looking on the internet and to be honest, was a bit of an emotional wreck. Thursday came, X Rays revealed she had a curve of over 50 degrees and the doctor it was going to get worse and that she needed surgery asap. This had been my 'worst case scenario' and I was absolutely devastated. When he read out the risks I felt like I have never felt before. I had to be referred back to the NHS as the cost of the op was over £20,000!!!
It took about 3 weeks for me to stop crying at night about this. Lois has been amazingly strong, I make sure I do not cry in front of her as it will make her scared, however she knows I am worried.
We had more X rays done this week. Her curve is now over 60 degrees, in 6 weeks it has worsened by 10 degrees. She is in pain more often now, needing her back rubbed especially at night.
I wish so so much that I could have it, not her. I feel guilty for not noticing it earlier. I am angry that schools do not test for it, so I am definately signing the petition if i am able to now. I am scared about having another child in case they have to go through this....there is so much that is going through my head at the moment, however reading some of your stories has made me see how positive it can be after the operation. Thank you so much for commenting on this page, it is so helpful to people like me.
Hope all of the families on here are doing ok now.
Posted by christine (U10806837) on Sunday, 12th September 2010
Please stop feeling guilty, it's not your fault.
Lois and all your family will get through this. All of us on this forum have been there and will help you through it. Whenever you need to talk just post your message, we will try and support you and be here for you to vent your feelings. I understand why you need to be strong for Lois. You also need to take care of yourself, don't bottle things up, talk about it.
Have you had an appointment through yet? Which area are you in?
Emma's petition is now over 1000 signatures on one site and probably about 500 on another site. We are unsure at the moment how to proceed as other petitions have had a great deal of signatures and have not changed the way the government thinks about testing in schools. Any ideas from anyone out there would be greatly appreciated.
I have another daughter who is now 9. When she was about 6 I was told she too had scoliosis, although only mild, but thankfully her scoliosis was not structural as in Emma's case but due to muscle spasms and has now been given the all clear.
Please feel free to ask any questions that you need answering, we will do our best to put your mind at rest.
Christine, Emma and Megan
Posted by Rachael_2010 (U14611051) on Sunday, 12th September 2010
Thank you Christine, it is very reassuring to know that. We are in Nottingham, under the QMC but have yet to see the consultant there. It seems so much longer than only 2 months since we noticed it!! The private consultant I saw initially said she would need it doing before Christmas, I am not sure if that is still the case now.
I got a few of my friends to sign the petition via a link I put on facebook. I can understand your feelings about it, however I think it would be worth sending it or raise the profile of the petition again, via some of the scoliosis groups on facebook or other internet groups.
How long ago did Emma have her operation? How does she find moving about now? Does she have trouble bending and lifting things now? And most of all, is she pain free now?
Thank you so much for your help. Are you a member of the SAUK? I joined recently. its incredible how much something that was more or less unheard of 2 months ago is now such a major part of our lives!! I just keep on reading and reading info on scoliosis, probably looking for an answer to a question that will never be answered....that question being 'Why is this happening to my baby?'
Posted by christine (U10806837) on Sunday, 12th September 2010
We are in Gateshead. Emma was under the care of Mr Fender at the Freeman Hospital, what a wonderful surgeon.
Emma was only 10 when we found out about the curves (she had an S curve) and within 6 months was in urgent need of the surgery. Her curves were approx 80 and 70 by the time of the operation. It does come as a shock how quick the curves seem to worsen.
Thank you for putting the link on your facebook. We have been members of SAUK for over 4 years now. They ran the link for the petition in one of their backbone issues and on their website. Have you come across the yahoo group scoliosisnutty and also on facebook Scoliosis "How to look good twisted". They are both run by a wonderful lady called Simone who is English but lives in Spain. They are full of useful information. She also has a website scoiosisnutty.com which runs a link for Emma's petition.
Gillian McKeith's website also runs the petition with separate signatures.
Emma had her operation end of March 2007 just 2 months after her 11th birthday. Mr Fender did an amazing job and managed to reduce her curve a lot more than he anticipated. As Emma's curve was an S curve she has the rod fitted from T3 to L4 so the majority of her spine is now rigid. She is able to lift OK and within a year was back to normal activities. Because of the amount of spine fused she has had to learn to adapt regarding bending. Emma has just found out that, like her younger sister, she is hypermobile and this rather than the scoliosis causes her aches and pains.
Have you requested a copy of the book Becca's journey from SAUK (I think that's what it was called) about a young girl's scoliosis journey through diagnosis and operation. It helped me understand what Emma would be going through.
I too was like you and actually still am, reading as much as I can on scoliosis. I have never found the answer to that question either, you just wish you could go through it instead of them but all you can do is be strong for them and help them through what lies ahead. There is a light at the end of the tunnel and Emma never regrets going through the surgery.
Remember to take a look at scoliosisnutty.com, I am sure there is a section on there on what to ask at consultations. Hope your appointment comes through soon, thinking of you all,
Posted by madmum2816 (U13850009) on Monday, 13th September 2010
Hello Rachael and I am glad you have found us.
Please don't feel you are to blame for your daughter's scoliosis. I felt exactly the same when my son, Cameron, was diagnosed. His curve went from 35 degrees to 74 degrees in 8 months.
We were referred to Stanmore RNOH and from surgeons appointment to surgery took 6 weeks as his curve was progressing so rapidly. He was 15 at the time - just about to go into year 11!!
We have all felt those horrible emotions as our children have gone through this process. You will meet many parents going through the same thing on your journey, and will be amazed at how the youngsters cope and get through it. It is EXTREMELY hard to put on a brave face all the time and I was emotionally drained for over a year.
Cameron's surgery went well and he was up and walking a week later. He has since been to parties, music festivals and gained 11 GCSE's and is starting at 6th form college. He only had 3 weeks off school!!
You and your family will get through this. The hospital nurses and doctors are very supportive, and you will meet many other teenagers having surgery.
Cameron's curve was reduced to just 16 degrees and he was so brave and positive through the whole thing. He has no regrets about having the operation - he has a lovely straight back.
I have hardly heard of scoliosis before my son was diagnosed. DO NOT scour the internet for hours as there is so much negative information out there. It left me really depressed reading it all. There are lots and lots of positive scoliosis stories - so keep in touch and let us know how you get on.
Posted by daniasmom (U14517840) on Wednesday, 22nd September 2010
Hello Christine, Tracy, Sue, & everyone
Rachael welcome aboard, there are lovely people in this Blog, I was really happy to find them here...very kind and supportive indeed.
Hope everyone had a good summer, and kids have enjoyed their holidays.
Sorry haven't been really active lately.
Here's a little update about Dania's surgery. Well she was supposed to have a surgery on 20 Sep, last Monday at Royal Orthopaedic, Stanmore, but we were told that the new rods that she's going to have (Magnetic Rods) did not get ethical approval yet!!!! My husband and I were really disappointed after feeling happy that the doctors have invented a smart growing rod which does not need incision every 6 months for extending...it's done on the out patient dep. where the rod is extended by something like a remote control, which would be better for young patients who have a visit every 6 months.
Now, we either have to wait for the approval...(although time is not on our side, Dania is urgent), or go for traditional growing rods!!
I will keep u posted, but if you are interested to find out more about magnetic rods i found this video online:
Good luck for everyone going to have their op soon....
Can anyone please tell me about their kids rods extension sessions? was it painful?? how did they cope???
Posted by K (U14622405) on Wednesday, 22nd September 2010
My little boy is 6 and has special needs (very rare syndrome to which scoliosis is linked, but he is of good health with no other known medical conditions). We saw our Consultant at the new Childrens Hospital in Manchester for the first time last week and he was very concerned about the degree of curvature. He talked about surgery and an MRI scan but will see him again in 6 months time for further xray, probably so he can collate information about the syndrome before hand, so we gather from that that surgery will probably follow next. We were supposed to be receiving annual health checks/examinations from the Community Paediatrician but never have until I had raised a query with my Geneticist, and he got checked out in May and the referral was made. I had also given permission for the Physiotherapist to check him over in April, which she never did. Our Occupational Therapist told me back in May that scoliosis had probably developed because of the way my son sleeps. Physiotherapist told me to make my son do exercises for 20 mins, told her I'd be lucky to get him to do 20 seconds as he has hypermobile joints, autistic tendancies and a mind of his own! Today when I phoned to give an update the OT told me that the surgeon only wants to operate on my son to get him off his waiting list and not to go rushing into surgery! Have you ever heard of anything so disgusting - fuming would be a good word to start with. The Therapy Services don't like being told that their so called suggestions are not going to help, and instead of being supportive they come out with stupid remarks. We know of teenagers/adults who have had the operation but don't know of any young children. Is there anyone who can share their experiences. Thank you for your time
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Posted by christine (U10806837) on Thursday, 23rd September 2010
What a disgrace, I would advise trying to get a change of OT. What a stupid thing to say. Surgeons will only carry out surgery for scoliosis on a need basis not to get your son off his waiting list, what a load of rubbish. For starters, scoliosis surgery is so expensive so not an option for the hospital if surgery can be avoided.
Emma was just turned 11 when she had her operation but there was a 9 year old girl on the same ward who had her first operation when she was 5. She had to go back every 6 months for rods to be lengthened. The way she coped was absolutely amazing. Just a couple of days after one of these surgeries and she was practically throwing herself onto the bed and acting very normal. Obviously she was well used to the surgery by then.
Emma is now 14 and has to do physio exercises to improve her posture, breathing and muscle strength. My other daughter, Megan, is 9 and she has benign joint hypermobility syndrome and also has daily physio exercises to do. I know how difficult it is to try and get them to do the exercises and they do not have the added complication of autistic tendencies.
Did your consultant tell you what degree the curve was, if not it may be worth getting in touch and asking them if they could give you an idea of what it is now? When you go back in 6 months' time and they measure the curve again it gives you something to compare it with and see how quick or slow the curve is progressing. Has bracing not been suggested to try and slow the curve down?
Hope you are OK and someone else on the forum can give you the help you need.
Posted by christine (U10806837) on Thursday, 23rd September 2010
Sorry Dania's surgery was cancelled.
Have looked at the link and these rods seem amazing. He reckons they will be available in a year's time.
What degee is Dania's curve now? How quickly are they progressing? What has Dania's surgeon suggested, does he want to wait or go ahead now?
I would be inclined to put my trust in what the surgeon has to say, these doctors are specialists in their field.
Found a thread on scoliosis-support.org you may be interested in (www.scoliosis-suppor... where the magnetic rod has successfully been used on a patient's knee. There were other posts on this site to do with the magnetic rods, you've probably already come across them. I know, like me, you do your research.
Hope you get answers soon.
Posted by K (U14622405) on Thursday, 23rd September 2010
Thanks very much for your reply. I am awaiting for the surgeon's secretary to call me back to let me know as to what degree the curvature is.
Telephoned the Therapy Services this morning to speak to the Manager but instead got through to the OT I spoke to yesterday. Told him I thought he was very unprofessional and shouldn't have said what he said, and that at the end of the day my little lad is my child and I will decide and do what is in his best interests. Also told him he needs to look at the bigger picture in that severe scoliosis puts pressure on a child's lungs and heart and I have enough to worry about without further complications.
I believe surgery costs in the region of £20,000 or more so I don't think for one minute the consultant would waste NHS money. Consultant said he didn't think a brace would work but we were given this option, however, my boy is up and mobile and I don't want to put him through wearing that for 22 out of 24 hours a day when we know surgery is likely, that would be so unkind. Am going to have him checked over every 2 months by Community Paediatrician and school therapists are also going to keep a look out for any changes.
Hope both of your girls are ok, and thanks again for your reply x
Posted by daniasmom (U14517840) on Friday, 24th September 2010
I am sorry for what you've been through with NHS staff.
I live in Manchester too, my daughter's consultant is in the Manchester's new children hospital too.
About a year ago, he told us she has scoliosis, and there's nothing we can do about it , we just have to "keep an eye on her" until what he did not say, he did not suggest any solutions for us, did not even give us any hope.
We went for a private consultation in Birmingham with a paediatric orthopaedic spinal surgeon, who gave us some suggestions on how to treat my daughter, he suggested another consultant's name in London at Stanmore who is brilliant in dealing with young kids scoliosis....we went to see him too as private consultation....beleive me it was worth it! This doctor really knows what he's talking about, he suggested that she does growing rods operation....this year her curves became 44 degrees , she is urgent....we are waiting for operation date. For the consultant in Manchester my daughter's file is still not urgent, she has not been seen buy him since last year....he is going for the "wait & keeping an eye on her" policy.
It is always worth seeking a second and third even forth opinion when is comes to your kids health....don't just wait for manchester doctor.
Posted by daniasmom (U14517840) on Saturday, 2nd October 2010
Sorry It's taken me ages to reply back.
Thank you for your messege and advice
I have written a letter to chief executive of RNOH asking him to give permission for Dania's operation...he promised to use this letter to put pressure on the approval committee to come up with a decision soon.
I was told by a friend who's a doctor that I can contact the approval committee directly and ask them to give permission for the surgery on humanitarian grounds.
Dania's curves were 10 degrees last year and 44 degrees in May this year...she's classified as urgent.
Thank you for posting the website about magnetic rods, it's was really interesting reading
Action plan: to call approval committee if there was no response we will head to the MP.
Posted by Rachael_2010 (U14611051) on Saturday, 2nd October 2010
Hiya again, thankyou so much Tracy and Christine for your supportive messages. I have tried to stay away from the computer for a while as I was going through a 'down' stage and just needed to try and focus on reality and work through my emotions.
Since I last wrote Lois has had to have lung capacity tests, which showed her airways were tight. We have also seen the surgeon who will be doing the op. He says she will have it done between a month and a half to 3 months time. We have had an appointment through for an Echo test on her heart. Did Emma and Cameron have these tests done too?
The surgeon has said that Lois can choose where her scar will be - neck to bum or armpit to hip. We are hopefully going to see some girls who have had both ops, the hospital said they have a group of girls who are willing to meet with us. Lois is still being so, so good about it. She wants it done sooner rather than later so she can get back to normal.
It feels now like we are on a running machine - things seem to be speeding up and you just sort of get pulled along at speed. I don't know how I am managing to hold down my full time job. (I am a teacher so its quite a stressful job anyway!)
Your positive messages, as well as joining the Scoliosis society and reading things like Bekka's Journey, have really helped. I have had a message from someone in America telling me its the worst thing I could be doing as she is in agony now and that there are alternative therapies. I have tried to ignore it and just focus on the positive experiences, which are the majority!
Posted by madmum2816 (U13850009) on Tuesday, 5th October 2010
I remember exactly how I felt being pulled along by events!! It all happened so fast in the end - which we are thankful about now. Cam did not to have any additional tests apart from his MRI, but I know echoes and lung function tests are done by some doctors.
I remember reading a post from an American woman who was against surgery and it really upset me - but I found many more positive and supportive stories than negative ones.
It is a good idea to meet others who have had the op - we were in touch with several girls and boys before Cam's op and it does help. They also gave good tips on what to take into hospital and on things to do while recovering.Cam did not have a choice on where his scars would be. He had one on his right side from the anterior release procedure and costoplasty, and one long one on his back from the posterior fusion and instrumentation. They have faded such a lot now!
I hope your colleagues are being supportive - mine were brilliant (I'm a community midwife). It really helps to have someone to talk to outside of the family. Lois sounds like a very grounded young woman and this will help her get back to normal after her operation.
Keep us posted with further news.
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