PDA

View Full Version : New Member


ELLA22
10th January 2007, 09:37 PM
Hi I'm new here. My daughter Cerys has just turned 3 and has scoliosis mainly in the cervical/upper thoracic region but also has a hemivertebrae at the base of her spine. We first noticed a problem just over a year ago due to a rib hump and her paediatrician refered her to Queens Medical Centre. We have only had one appointment but they said she will need surgery as her head is tilting to one side and she also has a weakness in her left arm. She had a ct scan and mri in december so we are now waiting for a follow up appt to see what they have planned. She has been a little star throughout and even managed her ct without sedation. It will be great to hear from others who are going through the same thing! - Ella x

GillyG
10th January 2007, 10:49 PM
Hi there, and :welcome:

I have had the surgery recently as an adult, but there are many members on the site who have children with scoliosis, so I'm sure they'll give you some sound advice. I think it really helps just to know someone else is in the same boat so you can bounce ideas off each other. Hope you get some helpful feedback.

Gilly x

Amazed Jean
11th January 2007, 02:47 AM
Welcome to SSO

andrea
11th January 2007, 01:43 PM
Hi Ella and welcome to SSO. I'm sorry to hear of Cerys' diagnosis, but am glad you found us. It's some comfort to know that there are others going through the same as you. I am assuming that the hemivertebrae is what is causing her scoliosis? Would that be right? Do you know what degree of curvature she has and what surgery is being suggested? Perhaps that's too much info to be gained from one appointment. QMC has a great reputation so you're in the right place to receive some excellent treatment.

My daugher Erin is 4 and has ideopathic scoliosis, which was diagnosed when she was about 20 months old. It's amazing how they cope with everything thrown at them isn't it?

When's your next appointment? If you have any questions, please ask away....

Andrea
x

ELLA22
11th January 2007, 02:15 PM
Hi thanks for the welcomes.
The hemivertebrae at the base of her spine is not causing any problems (yet) and she is quiet straight until you get just below the neck. From the x -ray it looks like there are 7-8 abnormal vertebrae in the cervical region. They measured her curve at 30 degrees but were more concerned that she had a 3-4cm movement away from the spine. (I can't recall the term they used!). It also looked like some fusion had started and she has a number of ribs pointing upwards, 2 being above her clavicle. We are waiting for the next appt to come through when they have looked at the mri/ct results.
I agree that its amazing that they just get on with everything. She had a nurses outfit and doctors bag for christmas and knows what all the instruments are for -bless her! I have loads of questions but Cerys has just woken from her nap so I'll bombard you all at a later date - Ella x

andrea
11th January 2007, 02:36 PM
Feel free to bombard us anytime you like. I probably won't have many answers as I don't know too much about congenital scoli, but there will always be someone who does.
xx

christine-1985
11th January 2007, 04:18 PM
hi am christine :welcome2:

mark
11th January 2007, 04:52 PM
Hi Ella

I'm glad you found us

Sorry to hear about your daughter. Cerys sounds like a really bright and brave little girl. As Andrea has said just bombard away with any question. There is usually someoe who can give you an answer if not we will endevour to find the answer out for you

Welcome to SSO

:welcome:

florence
11th January 2007, 05:22 PM
Hi ella. My girl is somewhat older - but she is still my baby (she'd hate me for that as she is very nearly 14) I've been dabbling here for about a year from around the time when she was diagnosed and I've found that someone always has an answer or knows someone who does. The thought of surgery must be really scary for you. Beth at last was able to have some imput ino the decision but as a parent you always question if you are doing the right thing - even when everything, all the evidence scans etc tell you that surgery is the way to go. Dammed if you do, dammed if you dont. Initially after beths surgery when I saw her I even doubted again wether surgery was in her best interest. Stay strong. Our children are indeed stars. It is a huge learning process and for us we are now coming out the other side and I've been very privelleged to see another side to my daughter, her resilience, her strength, her empathy for others on the ward less well off than herself... the list is endless.
Best wishes to you all.
Helen

tonibunny
11th January 2007, 06:10 PM
Hi there Ella, welcome :welcome2:

I was diagnosed with scoliosis as a baby and grew up with it, and can promise you that things are probably a lot tougher on the parents than on the children themselves! I had a great old time going into hospital and playing with all the other kids there. I'm sure Cerys will take everything in her stride (lovely name btw) :D

Toni xx

ELLA22
12th January 2007, 12:59 PM
Hi everybody - thanks for making me feel so welcome. It is a relief to talk to others going through the same!
Just wondered if anybody can answer a couple of questions for me! Firstly, Cerys has very 'clicky' shoulders and sometimes complains of pain in her shoulder - is this usual as the consultant said she shouldn't be in pain? I'm sure it must be very uncomfortable with her rib hump and have given her calpol when needed.
Also they said it looked like some fusion had already taken place, if it has is the only option to fuse the rest of the problem area so that the curve remains how it is now or are there other options? They have said that they cannot get her fully straight as her brain has compensated for the head tilt so her face is now asymetrical. If they put her totally straight she would have to have lots of plastic surgery.
And lastly has anybody got experience of surgery at the QMC. I understand they have a great reputation but always nice to hear personal stories to back that up!
Thank you - sorry for waffling! - Ella x

titch
12th January 2007, 02:40 PM
I wasn't on the paediatric side, but I had a very successful revision surgery (fixing the mess left by a non-specialist) at QMC in October 2002, done by Mr Webb. I found the whole experience absolutely night and day compared to my previous surgery - there is so much to be said from being in a specialist centre, as it means that the staff, generally speaking, just understand things so much better than they do in a general hospital - something which is almost as valuable as having a good surgeon.

Again, this is only speaking for the adult side, but something I was especially scared of before the surgery was pain - I was in a lot of pain and on high doses of painkillers beforehand, so considering my pain was uncontrolled after my first surgery I was very scared indeed that it would not be possible to control it. Again, there was absolutely no problem with this - literally the only issue I had was that one afternoon they were very short staffed and so it took quite a long while from when I called and asked for the painkillers until they were provided. So essentially no problem with something that had been one of my greatest fears.

Are you going to be up on D8? Sister Shacklock runs a tight ship and again if you get the same physios, they're just lovely. I had a vicious hatred of the physios I was forced to endure after my first surgery, but the ones there were lovely and matter of fact about everything. Can't remember the name, but one of them was still there last time I went to visit someone, tall dark blonde haired slender chap with specs - he's fantastic and restored my faith in the profession :-)

Basically, an awful thing to have to go through, but made so much better than it had been the first time around at a different hospital.

florence
12th January 2007, 03:35 PM
There they go again "shouldnt be in pain" ridiculous statement - you are or you aren't and as your little one cant tell you, your instincts are probably right. You know her best, certainly far better than a doctor who meets her for a short time. Although I already said Beth is a lot older and I really dont think her condition compares to your little one but as her scoliosis got worse and the rib hump became enlarged - there was an increase in pain. She also got clicky shoulder and clicky hips and aches down her legs. She seemed to pull or crick her neck and shoulders regularly. I'm sure it was all part of the conition.

ELLA22
15th January 2007, 02:41 PM
Thanks everybody for the replies, I am due to ring the spinal outpatients on Wednesday to see if the mri has been compiled and we can then get an appt to see exactly what they are doing!
Titch - I don't know where we will be yet in the qmc. I will ask when the appt comes through. Our consultant is Dr Freeman , although we have not seen him yet. Hopefully we will next time. We have been into childrens ambulatory care and the spinal outpatients and everybody has been lovley so far. Do you know if there is a childrens section in that ward?.
I will update more when we know what is happening
Thanks - Ella x

titch
15th January 2007, 03:35 PM
Mr Freeman is a bit of a genius - when I was in, diagonally opposite me was a woman who had emergency surgery by him after 2 of her vertebrae in her neck suddenly collapsed (she was an older lady with cancer) and she abruptly lost most use of her legs and all sense of them. She had a very complex surgery to removed the diseased bone, and do replacement for the length with cages and things, and fusion. She was making a very good recovery when I left :-)

I don't honestly know if D8 has a children's section or not - I thought that it did, a bay somewhere down to the right after you enter the ward, but I could be wrong on that as it wasn't really something I paid a lot of attention to at the time.

Fingers crossed you get things sorted out on Wednesday, I'm sure it'll feel good (if rather daunting) to have things moving. Make sure when you book the appointment that it's for a clinic that Mr Freeman will be at, and ask them to mark your notes if possible to say that you really want to see him specifically when you come in. Then remind them of that on the day (they may tell you just to do that anyway) - often useful if you make sure to be there a bit early especially if you have a later appointment, say 10.30am or after, as it means you can be sent down for xray if needed before seeing him, and also gives them time to make sure they can juggle things a bit if that's required. They're generally very good about it - I was told at my last appointment, where I made a point of asking to see Mr Webb due to some problems I'm having, that they try to make sure you see your own consultant for at least 1 in 3 appointments, so as you didn't see him last time, and there's a lot going on they should be ok with that. The nurses in spinal outpatients are lovely, aren't they?

andrea
16th January 2007, 01:12 PM
Hi Ella

Good luck with outpatients tomorrow. Unfortunately I don't think I cn much help with your previous questions. Erin has never had clicky joints (although I know there have been conversations about this on the main scoliosis forum) or any pain, but then again she is in a cast and has no movement of her back. I can often feel her back crunching through the cast, but she has no pain from it.

You might want to query whether growing rods would be an option rather than a fusion of the problem area, which will affect her growth (depending on how much is fused). I don't know if they use growing rods with congenital scoliosis, but they will be our next step in due course.

It sounds like you're in very safe hands. Let us know what news you find out tomorrow.

Take care
Andrea
x

ELLA22
17th January 2007, 11:31 AM
Hi all,
I rang the spinal outpatients and they hadn't got an appt for Cerys so she put me through to Dr Freemans secretary. She said they discussed her at the friday meeting and had dictated a letter to us. They want to see her in March for more x-rays. Hopefully the letter will tell us the CT/MRI results and she said we should get an appt through in the next 3-4 days. I'm assuming that they want to see her in March so that there is a 4 month gap between x -rays to see how the curve is progressing. At least we now know what is happening and I look forwards to getting the letter. I'm assuming that this will give us a full diagnosis as we haven't had one yet!
ps, Titch - the nurses have been lovely in spinal outpatients and amb care. They even gave her a pressie when she managed the CT without any sedation! Only problem now is she thinks they will give her a present everytime!

GillyG
17th January 2007, 12:54 PM
Ahh, bless her - your daughter sounds really cute and very brave :-)

Getting the appointment sorted and finally having a diagnosis and some results should help, it's always better once you know what's going on.

Good luck.

Gilly xx

andrea
17th January 2007, 01:05 PM
That sounds like good news to me Ella. That they've discussed her case and are moving forward. We didn't actually get much of an MRI analysis after Erin's. We were just told very briefly that it didn't show anything other than the scoli. However, with Cerys having congenital scoliosis, you'd probably expect a bit more information coming your way. She does sound lovely. Do you have some pictures to post? Let us know if you'd like to and we'll get you a gallery set up.

Fingers crossed the letter arrives soon
Andrea
x

crkcallie
17th January 2007, 04:41 PM
WELCOME TO THE FORUM!!! :D

conni60640@gmail.com
17th January 2007, 10:50 PM
Welcome! My son Billy is six and has congenital scoliosis also. He had a lumbar hemivertebra also, along with a half sacrum, tilted pelvis, etc that caused his lower spine to be unstable, needing a fusion surgery last summer. He is doing very well now! If interested, there is a link in my signature for a group specifically for congenital scoliosis, and there are a couple children with cervical malformations/scoliosis there...

Reading the list of your daughter's issues, I have some questions/concerns that I want to ask, so I am sending you a private message with this. I belong to several support groups due to Billy's multiple conditions, and I've seen some similar issues in other children over the past six years...

ELLA22
18th January 2007, 09:46 AM
Hi Andrea a gallery would be good thanks although I'll have to leave hubby to the pictures. I'm useless with the computer!! Will update when we've recieved the letter from the consultant and hopefully have a bit more info!
Conni - I've replied to the pm and as I say I've been looking at the symptoms she has and her other medical problems so you didn't scare me! will keep you updated!
Ella x

conni60640@gmail.com
18th January 2007, 01:02 PM
Glad to hear it, good luck in March!!! :-)

andrea
18th January 2007, 07:08 PM
Hi Ella

Just to let you know that i've created a gallery for you. If you click on New Member Galleries in the navigation bar on the left and click Submit then you can add a photo or two. Don't expect it to go up straight away - we have to admit them to your gallery for you.

Take care
Andrea

ELLA22
19th January 2007, 01:30 PM
Hi
Thanks Andrea for setting up the gallery I will take some photos later. We had the letter this morning. It doesn't say much! They have looked at her MRI and CT scans of her 'complex spinal deformity' and they need plain x rays taken in approx 4 months (assuming they mean from her last lot in November) to get a clearer picture of how to best help Cerys. The worrying part for me is 'This is a difficult management problem.' :???:
They said this last time we went and the ortho. doctor who refered us to qmc said he only sees 1-2 cases like hers per year. I'm trying not to worry too much or I'll drive myself mad between now and March! I have a feeling that we will be spending lots of time at the QMC in the next few years!
Better take the little monkey for her nap!
Ella x

GillyG
19th January 2007, 03:37 PM
Hey Ella,

Try not to worry too much - I know that's easy for me to say - but I'm sure you're in very good hands at the QMC.

I know from reading through some of the posts that quite a few members have been treated there, or their children have, and some will probably even know your daughters consultant.

I imagine the x-rays in 4 months time will be to assess the progression (or not) of her curve and from there they will decide on the best course of action.

At least she is 'in the system' and being cared for at a specialist centre. As a parent, you've done all you can for now.

Take care and good luck.

Gilly xx

crkcallie
19th January 2007, 11:46 PM
Welcome to the forum!

sarmstrongs
26th January 2007, 02:21 PM
Ward D8 the spinal unit at the qmc has a childrens area itas a 4 bedded unit. fantastic there is everything any child would need in fact my daughter who had surgery twice and stayed on the childrens unit twice enjoyed her stay staff are excellent lauren knew thenm all on a first name basis
you can stay with your daughter all the time i spent 2weeks in there with lauren did her washing on the ward and drying of her clothes you can make as much tea and coffeee as you want night times are long but while your childs asleep you can join the staff and have a chat not only that but you get the bed next to them too and if thats being used they give you a camp bed. they really try to keep it a home from home atmosphere for you and the child. games to play things to make sure takes there minds off where they are.
Bea Smith is fantastc nurse who will look after you during your stay is so surportive lauren has been seeing her in clinic as well as ward for the last 7 years andas a mum of any child going through surgery the support is there on and off the ward.
You can always go up to D8 and get to see the childrens area while your at the clinc and see before hand we did go up there on many occation and lauren recently went up to show them how well she is doing and the nurses made a fuss of her and kids no matter how old love that.
any questions please ask away
good luck and our best wishes to you both.

ELLA22
27th January 2007, 07:13 AM
Hi sarmstrongs
I have replied to your pm. Thanks for your reply I feel a bit better knowing what will take place once she is in the hospital. It's good to know that Lauren is getting on so well too. I'm sure I'll think of more questions for you!
I might ask to have a look at D8 when we go on 12th March -thanks again
Ella x