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sarmstrongs
15th November 2005, 06:21 PM
Hello what agreat site
m daughter is 11 1/2 yrs old and was diagnoised with congenital scoliosis at the age of 4. She had front and back surgery to put a rod in the lower part of her spine when she was 5. We were told that she would neede further surgery when she hit pubity as she had hump left side of back. On our recent appointment yesturday to be exact we were told that as the top part of her spine has now progressed it a case of what to do for the best i was told that she wolud now new front and back surgery again as al,though from xrays mri scans show that the rod at the bottom part of her spine is doing its job that one of the main choices is to completely rod the whole spine doing this would mean that she wouldnt grow any taller than she is now which is approx the size of a 6yr old.
he also said that what they see is vthe outsize but not what is going on with the nerves etc.
i have tried looking on web for information on stopping a person growing by rodding the spine.
Has anyone had this done heard of something simular.?
I was told that without the first surgery she would bend in two and wouldnt make the age of 10. I was given the same coments yesturday the only risk facters i was given was that she risk 5%not walking again. but he also said trhat it was beyond him what to do for best and what my opinion was.He said that he would be having a meeting friday with others in the fieeld about her case then they will getr back to me.
Ifeel that in the 6+ yrs we are now at between ops that there was something they missed out on and was only spotted now because they had other people there looking at her records. How do i tell her she wont grow up and stay ths size fore
ver no parent could its what we all go through life beliving we grow up to be adults. Iwont tell her this ever as that would knock her big time she already lacks confidence becausee of her hight her scoliosis she has taken very well and always knew she would have to have another op.
Iam at a loss as what to think say or do as if he is at a loss where does that leave them grasping at straws?
Any advice on whast i should do questions i should ask etc
michelle

tonibunny
15th November 2005, 06:39 PM
Hi Michelle, I'm so glad that you've joined us here!

:welcome2:


There's a lot for us to discuss here. Firstly, hopefully it will reassure you to know that by the age of ten, a child's spine will have reached 80% of it's adult size. So, although your daughter is already short due to her existing lumbar fusion, a thoracic fusion really won't make much more of a difference to her potential adult height. All her growth from now on will be in her limbs! I had my thoracic spine fused at the age of ten, and do not look like I have an excessively short torso - it's simply not noticeable. I'm five foot two. Another of our members, Vicki, had her spine fused when she was 6 or 7 and she isn't particularly short either :-)

The "front and back surgery" is the commenest way of operating on scoliosis, and is nothing to worry about. They go in through the front first, and remove the discs from between the vertebrae, so that there is more room for the spine to be pulled straight. Then they go in through the back and straighten it out and fill up the gaps between the bones with grafted bone, which eventually fuses the spine into one long line that can no-longer curve up :-)

Please can you let us know where your daughter is being treated, and the name of her surgeon? It worries me that she is only having check-ups once a year.

Toni xx

Sealy
15th November 2005, 06:50 PM
Hi Michelle :welcome:

How tall is your daugther ? Most children grow very little between the ages of six and eleven and then they hit the adolescent growth spurt. Have you looked into the VEPTR surgery ? I don't where you're located or if a hospital that's doing the VEPTR surgery is close by. You're obviously very concerned about your daughter's height and the VEPTR surgery would not stop further growth of her spine. It's something I would definitely look into.


Sealy

sarmstrongs
15th November 2005, 07:17 PM
Iam not so concerned about her hight from my point but from laurens it goining through the 2 in 1 sugery again that concerns me the most and the rodding of the whole spine.
her Hospital is the QUEENS MEDICAL CENTRE NOTTINGHAM
Her surgeon, consultant is Mr Medhian.
She is approx 123cm tall

sins
15th November 2005, 07:27 PM
Hi Michelle and welcome to SSo.
Firstly, you're actually dealing with one of the best hospitals in the UK and if your surgeon is discussing with his colleagues what the best plan is, then I'm sure they'll do what's best for her.
I'm sorry to hear that she needed a fusion at such a young age, sometimes with congenital scoliosis, there is little choice.What height is she?It's not unusual either for congenital scoliosis patients to be short in stature.
Has the doctor given you a measurement for the curve in the thoracic vertebrae?
I think just take a little time out and try to get her medical records and understand more about her condition.Then you can begin to make an informed decision.For example which kind of vertebral anomaly caused the scoliosis etc...
anyway, we'll do all we can for you and feel free to ask anything.
Sins

BeckyH
15th November 2005, 07:29 PM
good to see you here michelle, there are more details on me in my signature. i think with surgery if a surgeon is confident of achieving a good result in one surgery then as a patient that's a positive as it minimises anaesthesia and emotional trauma and so on. i can imagine as a parent it's distressing to watch but hopefully it will be worthwhile. as regards to having instrumentation throughout her spine, many members here can testify to that being something you get used to.

i'm very lucky that i only have 5 vertebrae fused, but i met up with some other members this weekend and it was only then that i realised that in only 17 weeks i've got used to having instrumentation there - i used to know exactly where it was and i could point to it, now i can't feel it and apart from making a vague gesture i couldn't tell you where it is!

QMC is a very good hospital for scoliosis, and it's important that you have confidence in your surgeon

BeckyH
15th November 2005, 07:35 PM
i'll also get soppy for just a second and say that SSO has been invaluable to me. even i find it hard to believe that just over 6months ago i knew very little about scoliosis (despite being diagnosed nearly 5 years ago) and thanks to everyone here i've learnt a lot and been helped greatly emotionally with my surgery. if you have a tiny worry like "ooh this doesn't seem right" people are here with all sorts of ideas and talk more sense than craziness :D even though we are a bit of a mad bunch

Abbi
15th November 2005, 08:23 PM
Hi Michelle! :welcome2:
As Sinead (sins) mentioned earlier....QMC is an excellent hospital....John (Zerodegrees) has recently had surgery at it, and it went well!
I am sorry to hear that Lauren has had to deal with scoliosis from a very young age, that must have been hard on her and you as a parent. I can sort of empathise with you on the confidence issue....my scoliosis wasn't that noticeable...unless you looked for it, however when wearing bathing costumes my shoulders would stick out and so would my ribs, and so from an earlier age (approx aged 10) I hated my body! (by the way I was d/n with scoliosis 18months ago, and had surgery 12weeks ago)
I am sorry I can't really be much of help.....I have not much knowledge on congenital scolsiois.
But if you have any other questions......please ask....we have some very knowledgeable and experienced members on here! :D

Abbi

sarmstrongs
15th November 2005, 08:31 PM
thankyou for all youir replys it is a great comfort to know that there are people out ther who do understand fears etc i will let my daughter join this site as she may have some questions of her own that you can reasure her with also mums as much as we can offer advice it is good to hear from others

tonibunny
15th November 2005, 08:34 PM
Michelle, if it's any consolation, surgery is a lot harder on the parents of children with scoliosis than the children themselves, who tend to bounce through the experience and recover fast. Those of us who had surgeries as children all agree on this. And those of us with long fusions don't find we are significantly affected by them either :-)

I'm so glad that your daughter is being treated at one of the best hospitals!!

DublinPauline
15th November 2005, 08:44 PM
Welcome to the site Michelle.
I have congenital scoliosis and had surgery when I was 13. I'm now 39, am married with one daughter and live a full life. Your daughter is lucky to be around in an era when treatment options are significantly more modern and effective.
I hope we'll be able to help you and your daughter get your questions answered.

Amazed Jean
15th November 2005, 08:54 PM
Michelle, Hi! You've come to the right place. We will be here long term for support and just listening too. I am 54 years old I have very large curves and never had any surgery or bracing.(I don't reccommend this! ) I am 4'8" on a good day. I am having serious trouble breathing and now on oxygen 24/7. You are obviously on the right path with your daughter. My best advice is for you to get and keep copies of all of your daughter's medical records and xrays. And keep a notebook to write doctor questions in.

andrea
15th November 2005, 10:12 PM
Hi Michelle, and welcome to SSO. I understand what it's like to be a parent worrying about scoliosis and coming to terms with diagnoses and treatment. My daughter is 3 and was diagnosed 18 mo ago with idiopathic scoliosis. As the others have said, Lauren is being treated at a great hospital, who I am sure will do the best for her. Please let us know if we can help in any way.

titch
16th November 2005, 09:38 AM
:welcome2: I'm sorry for the circumstances that have brought you here, but really glad that you have found us :-)

I'm treated at Queens Medical Centre as well, although I actually live down in Swindon. My original surgery was done by a non-specialist and I'm still living with the consequences of it. Something I can tell you about QMC is that none of the surgeons will take on anything they're not confident with - as an adult, at my routine check ups I've seen a different person practically every time, and at one point saw Mr Sengupta. I was trying to get things hurried up a bit at the time, and he told me straight out that he couldn't make any guarantees because my surgery would be too complex for him and I'd need a more experienced surgeon - it actually gave me a lot of comfort to know how careful they are there.

As it goes, regarding height and torso length and the like, it's already been said that your torso has reached much of it's final length by the time you're 11, but also it's possible (depending on exactly how the surgery is done) that your daughter's torso will be longer when she has had the surgery, just by virtue of straightening out the curves.

A lot of us here have several rods - I've got an anterior rod low down in my back (anterior is the surgery where they go in from the side/front), and 2 big posterior rods down most of my spine (posterior is the surgery from the back). It's pretty common to have both kinds of surgery.

I've sent you a PM - you should either get a window that pops up with it, or if not there's a link at the top of the forum page that tells you if you have new messages :-)

newgirl
16th November 2005, 02:01 PM
Hi Michelle,
Welcome to SSO. My 2 year old daughter has idiopathic scolisosis diagnosed at 9 months and she is currently being treated with plaster casts. It sounds like you and Lauren have been through a lot already, I really hope that you get answers to all your questions.
I have no experience of the surgery side of things but I do know what it is like to be a parent and trying to do the absolute best for your child.
I am glad to see that the UK contingent feel that the hospital you are attending is one of the best and I hope that reassures you. I would not necessairly be concerned that lots of doctors are looking at Lauren's files, it is pretty much standard practise nowadays for consultants and surgeons to discuss complicated cases with each other and get concensus on the best way of treating.
Nicola

Abbi
17th November 2005, 09:19 PM
Originally posted by tonibunny@Nov 15 2005, 08:34 PM
And those of us with long fusions don't find we are significantly affected by them either :-)


yeah, I agree on that Toni, my fusion is very long (down to T4) and I can pretty much do anything.....I cannot bend down very far, but that is grand, cos I have sort of figured out ways of doing things again, and it hasnt really phased me in any way....I sort of take everything as normal!

sarmstrongs
18th November 2005, 09:59 AM
Thankyou for all your words of support i will fill you in on what i know so far.
From what we learned from the age of 4 was she has a rare genetic condition called congenital synspondylisim also now know as spondylocarpotaral.
Children with this condition have short stature and spinal problems, earing, eye, nasal speech high palate and congenital abnormalities of the heart. Lauren has 2 small holes in her heart that before her last operation was checked but they wernt affecting her in any way which was a good sign. Iam at the moment tring to put a list of questions to ask as like many mums. On visits to see consultants you have loads swimming around in your head once your in the room they tell you something that shocks you then your mind goes blank all the things you planned to ask goes out the window. but putting to paper isnt as easy as we think.
First time round you go with the flow and ask the obvious and i know so many questions cant be answered as many a time its a we wont know that untill we are performing the operation.
So any help on questions to ask would be a great help?
Thankyou once again for all your support

grainnewoods
20th November 2005, 09:21 PM
Hi Michelle
Glad you found this site.Im a mum to a 13yr old girl with scoliosis(just been diagnosed approx 4 months ago)I myself also developed scol at 13yrs had harr rods and fusion but it didn't bother me nearly as much as when my daughter developed it , then it was a completly different feeling and my emotions have just gone off the scale.so dont worry so much about your daughters reactions cause i just know it is actually MUCH MORE painful for you going through this than your daughter.
I do think you should get as many opinions until You feel youve had the best advice (always go with your instinct as i've found this a good way of dealing with scoliosis plus feel free to ask the doc whatever questions you need to as this is your daughter so never feel intimadated)
Take care, hope all goes well

sarmstrongs
21st November 2005, 11:00 AM
It is a lot harder as a parent to watch your child going through this as with anything you have to be positive we can make them feel better in many ways but the older they get the wiser they are and more alert. My daughter knows she faces yet another operation and as started asking me mum do i have to have it?
will it hurt?
plus many more questions and the only thing i have been able to tell her to put her mind at ease (well at least i hope so ) is yes it is going to hurt but they will give you stuff to take away some of the pain, yes you have to have the operation to help you. I will be there with you every step of the way if you get angry about something let me know i can only help you if you tell me. I did also tell her that the last time she was only 5 and i did ask a lot of questions to the drs involved this time she may have some questions that she would like answers to and i cant answer them as iam not a dr i have my own questions so it would be good if you wrote down your thoughts and feelings whch she has started to do.
Iam a lot more at ease with the situation and iam phoning later today to find out results from fridays meeting will keep you informed

BeckyH
21st November 2005, 11:07 AM
it's funny, i was just about to suggest you let your daughter ask the surgeon her own questions but you're way ahead of me :D that's a mum thing, isn't it? it sounds like it's going ok...it must be pretty tough to take it in at 11 years old, i know i struggled when i was diagnosed and i was 14 then, i only really got to grips with it all earlier this year (i'm 18 now and it was just in time really) it must be tough to watch, but hopefully she will get better as a result and it won't be something you have to go through repeatedly. :squeeze:

RocketQueen
22nd November 2005, 10:09 AM
Hey I am glad ur feeling a little more positive now Sarmstrongs. :) The others ahve given u such good advice, there is nothing left for me to tell you.
Except don't be afriad to do whatever u can for ur daughter at this stage becuase with scoli, if u start getting older, it becomes more difficulat to deal with sometimes.
Also talk to me if u ever have a any problems with the holes in your duaghters heart.
I was born with one very large one right between the ventricals, so oxygen was NEVER passed around my body enough and I used to faint alll the time and couldn't more than about 3 feet b4 collpaing with exhaustion.
I had tetrology o fallot, and am one of few, and a very successful survivor.
I was operated on by Sir Magdi Yacoub, I was not allowed a blood transfusion (for PREVIOUS religous reasons) and my bllod count fell to 3.7. Yipes!!!
I'm perhaps a lucky lucky girl in a funny way.
This si cuasing some concern amoungst my surgeon and his colleuges too, he told me he was going to discuss me with his colleauges, and he was going to write to my previous hospital to ask if there would be any added risks.
Anyways.
Ta ta for now. x

sarmstrongs
28th November 2005, 09:02 AM
Thankyou rocketqueen. You have been through a lot i admire your attitude very much. I have tried contacting the hospital regarding the meeting that they were having on the 18th nov . but come up against a brick wall answer machines left many messages but no letters etc as yet. Usually i get letter for next appointment within the week. The worse part is the waiting to know what will happen and when. I had a week to sort things out the first time she had her op. I have since moved to another town still at the same hospital but no famil near and have a total of 4 children phew i know glutton for punishment i think iam prepared for anything but its like going on holiday there is always something you needed to do.
I am for the first week staying at my mums so its a camp out on her living room floor which the other children are all excited about a she lives 20 mins from the hospital will keep you posted of any new news happening but at the moment in limbo.
Lauren on the other hand has it all sorted if it happens before christmas then we have it early and then she can have christmas in hospital and get double pressents and can she have this that the other for being brave not daft at all to forfill it all i need to win jackpot n the lottery and take out a big bank loan hehehehe.
best wishes to you all
michelle

sarmstrongs
1st December 2005, 06:11 PM
Hi All,
Lauren has to go for ct scan tomo at the QMC they called me earlier to see if i could bring her in at short notice.
michelle

titch
1st December 2005, 06:34 PM
Did they say what part of her spine they'd be scanning? The CT scan isn't an especially scary test as these things goe, so she should be ok with it - much easier than an MRI :-) Hope it all goes well!

sarmstrongs
3rd December 2005, 12:40 PM
All went well she was a little scared but scan only lasted 30 mins approx.
they scaned full spine from what the nurse was saying and her neck and head and that wed get results from the spinal unit.

sins
3rd December 2005, 12:50 PM
That was fast michelle,
This is really progressing well for you.MRIs can be difficult for kids, but seems like she was a real little trooper.Hope you get the results soon, but usually, those scans are just a formality and show a normal spinal cord etc...
Fingers crossed for a decision about what they're going to do very soon.
Sins

sarmstrongs
3rd December 2005, 09:43 PM
I though the scan camr pretty quic k too , i have never had the hospital call me before for anything.Makes me think that things will progress pretty quickly.
9 months ago lauren was suffering problems walking and complained of really stiff legs. They said we would need a emergency scan and we waited 6 weeks before our appointment to come through and a further 3 weeks for the date. So for a phone call thursday and then scan fri tells me that we wont be waiting that long. I was told that she was on a 6 month waiting list for surgey as from 14th nov and to keep phoning to find out how far up the list we were.

Little Ali
2nd January 2006, 08:43 PM
Hi Michelle! :welcome2: Sorry I'm a bit late!
I hope you find this site helpful!

zerodegrees
13th January 2006, 10:10 AM
Hi Michelle, Sorry I'm a bit late too! Glad to see you've found us despite the difficult circumstances.

As you've probably read I had my surgery @ QMC in October 2005 (Mr Grevitt). They have some of the best spinal surgeons in the country, so you are in good hands. They are big on active discussion with other surgeons so dont worry.

If you've not seen the acutal spinal unit yet, they have a dedicated childrens area within it so all patients are treated in the same unit which is a great thing as all of the staff are dedicated spinal unit staff.

We're all here for you & your family.

Welcome to the madhouse.

john

sarmstrongs
13th January 2006, 11:17 AM
Thankyou John,
Lauren has been on the unit before when she had her first surgery at 5yrs. Her Surgeon is Mr Mehdian who she has seen for the last 7yrs.
We have to go for a follow up appointment on the 6th March to discuss scan and what options are now avalible but when i rang them they did say that she could be called in for surgery any time to every day the phone rings or postman iam on pins as much as you want things to happen you always wish you had a bit more time to prepare yourself and lauren for what lies ahead.
When before she had her first surgery she wanted to see micky mouse which she did in nov 99 then in 2001 vshe went back to show him her new back as she called it then. We go away for a week in may which if surery happens before hopefully all goes well for her to go as 6 months waiting list ends in may too but luckly we did inform them we would be away then. She now hopes that although at almost 12 yrs of age she gets to see micky mouse again after this op.
pHEWWW Kids think it grows on trees all being well iam sure she will get there again.
Once again i thankyou all for your support.
michelle Happy New Year

sarmstrongs
20th March 2006, 05:40 PM
Hi latest update on Lauren.
We went to see surgeon on 6th march after spending all christmas on tender hooks after countless calls and being told she was on the surgery waiting list. We were told on this visit that larens spine is setting and not much moveability there and that there plan was now to break the spine in a number of places then rodding there is a 70 30 % chance of her being paralised as her spine is bending at such a rate. Again a meeting was planned for further discusion on the 10th march, in the mean time she now has a raise that she has to insert in her left shoe to help aid walking and balance as one leg is slightly shorter which in my opinion should have been done long ago when this was first spotted. we have to have another mri scan and then go back for results on 19th june to see what will be done.

If in november they told us the spine had movabilty and that the need to rod full spine was the option yet 4 months on a different story I understand looking at every option for long term benefit etc but if there is such a rapid change why wait another 3 months during which time things could only get worse?

sarmstrongs
24th April 2006, 03:36 PM
Lauren's balance has improved a great deal since having a raise to add to her shoes. She has been for her second MRI scan now we just have to wait what the results will be on 19th JUNE.
Its all been go we are hoping to move house before then and we are going on a much earned holiday in may. So our minds are all over the place as to when surgery will take place firstly we went through christmas on auto pilot because she was put on a waiting list for surgery then in march when we went we got a lot of contradicting come back and then were told another mri and then we see where we go in june and what the results and plans will be it has been a tough year so far but we get through it day by day.
Hoping you all had a good easter

tonibunny
24th April 2006, 09:13 PM
Thanks for keeping us updated Michelle. I'm sorry things have been tough but it's good to hear that Lauren is managing better with a raise in her shoes. Take care and let us know how things go over the next few weeks - I hope you get some firm information about the surgery soon.

Hugs to you both :hug:

Toni xx

sarmstrongs
11th July 2006, 10:17 AM
We had a great holiday lauren learnt to swim to a fashion but it boosted her moral.
On the 19th June we went to see Mr Mehdian at the QMC but he was in a meeting and we ended up seeing someone we hadnt seen before. We were told that surgery was planned but were told that no notes were left explaining results of previous meetings all we were told was that her spine is now at 79% and that she would need op. We explained that we had known this from nov 05 but not what was happerning. We were told that he would get mr Mehdians secretary to get in touch after a fortnight of waiting we rang to find out what was going on as we had a 12th year old girl who asks questions we cant answer and we are getting told meeting after meeting but not getting any results back. We were called this tuesday and told that lauren would be going into hospital any time from sept but before dec. They are planning 2 operations the first would be through the front rib(not sure what that was) but she would have Halo traction fitted the the 2nd op 7 days later for the fusion she should be in hospital for 3 weeks after surgery.
We are now awaiting another call explaining all the risks involved.
As anyone had this surgery or can give me any advice as getting appointment to discuss this is proving impossible at present

tonibunny
11th July 2006, 11:16 AM
Hi Michelle,

Lauren's planned surgery sounds as to be expected really. The first operation is called an "anterior release" - this is where they operate through the front/side of the body so that they can remove discs from between the vertebrae, which creates more space for the vertebrae to move into so that the spine will be able to be pulled as straight as possible.

Halo traction isn't often used, but it isn't anything to worry about. I had halo traction following the first stage of my surgery when I was 10, and my curve was almost the same size as Lauren's. The traction helps to pull the spine straight so that they will be able to get the best possible correction for her.

The final surgery will be the fusion, where the metal rod will be inserted and bony material will be placed so that the whole thing eventually grows together into one long fused length.

Hope this helps a bit :hug: