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ELLA22
6th June 2007, 08:58 PM
Hi everyone
I took Cerys to see her paediatrician today and I took the disc with her x-rays, ct and mri on and we managed to get the reports off so we now have an official diagnosis of;
Severe Focal Cervico-Thoracic Kypho-scoliosis
What a mouthful!! :-)

I'm a bit unsure of a couple of things if somebody would help please!!

The cervical spine CT shows multiple areas of fusion anteriorly and posteriorly mainly C2 downwards (C2 peg is bifid) with an accessory tip. - I get the fusion but what does the bifid peg with an accessory tip mean??

The main area of concern is the cervical/upper thoracic spine but it also says "The kyphus (convex to the right) seems to be centred at approx T5 where there is a butterfly type vertebrum". Firstly, what is a butterfly vertabrae ? and does anybody know if a single butterfly vertebrae is likely to cause a big curvature?

The next part I'm unsure of "The foraminal recess anatomy, particularly in the upper thoracic spine appears highly confusing. The sagittaly recons also suggest some kyphus. The right C1 has slipped forwards slightly but this may be simply postural"
She also has 6 lumbar vertebrae, does anybody know the implications of this??

Sorry for all of the questions but I know that if anybody can answer them it will be you guys!!

He also said that QMC are not keeping him updated and he suggested getting a second opinion as Cerys' case is very rare. I'm unsure about this but wouldn't hurt I suppose. He is also writing to them to try to get a managment plan to see if it is ok to arrange physio on her weak arm. We are also being refered to an OT as she is having trouble walking far at the minute and I'm having to carry her everywhere!!
Thanks in advance for your answers!!
Love Ella

GillyG
6th June 2007, 11:45 PM
Ella, I'm afraid I'm not as up on all the 'scoliosis speak' as some of the others. I can follow all the general numbering of the vertebrae etc, but when it comes to 'bifid pegs' I'm completely lost! I did, however do a quick search and found the following link explains things quite well. click here (http://www.dundee.ac.uk/dentalanatomy/hn1text.htm)

Hope this helps a bit!

Gilly xx

titch
7th June 2007, 11:18 AM
http://www.owlnet.rice.edu/~kine351/spine.pdf

If you scroll to page 3 of the document, you'll see that it shows the bone known as the Axis, the second cervical vertebra. This has a post which sticks up from the front of it, which is what is meant by the peg. Bifid I'm pretty sure means that it's split.

A butterfly vertebra is also one that is split, the body of it has failed to have the 2 sides completely join - here's an image of one: http://mskcases.com/images/article/1/168-173.jpg Now, the peg on the C2 vertebra would originally (early in human development) have been the body of the C1 vertebra, so as long as I'm understanding it right, it's basically the same type of problem, presumably occurring at the same stage, which has affected both vertebrae similarly.

I think what is being referred to by foraminal recess is also known as the lateral recess - at the bottom of the following link is a picture which shows where/what it is: http://www.ucsf.edu/nreview/07.1-Spine/LateralRecess.html The foraminal canal is the part at the side of the vertebra where the nerve roots exit, so I guess it's saying that this is all kind of odd. I wouldn't be too surprised if this turns out to be part of the problem with her arm pain, but if so the good news there is that when the surgery is done, decompression should be able to be performed as part of it and should give great relief.

The issue with the C1 will be that it may have reason anatomically to be sat forward of where it should be, but clearly they're not sure of that as they say that it could be postural - I imagine they're not sure because of the bifid peg, which is what C1 articulates on, so as it's not normal they have to consider that it could be related to that that it is sat oddly. It doesn't sound like a massive amount of attention has been drawn to it other than just noting it though, which is good.

The 6 lumbar vertebrae is an interesting thing. I was told that I have 6, however Mr Webb took one look at my xrays which weren't even full spine and promptly said that it was far more likely that I'm missing a set of ribs, giving the appearance of 6 lumbars. He reckoned it's moderately common in women, and that it commonly ends up being read as 6 lumbar but that either way, whether it is or isn't it's not a problem unless it's lumbarisation of the top sacral vertebra which can sometimes cause problems because the sacrum is then less stable. So unless they've also made mention of sacral problems, this can most likely just be written off as an interesting oddity :P

It might not hurt to get a second opinion - I have every faith that Mr Freeman is a fantastic surgeon, as you may recall I was on the same bay as a patient of his who had removal and reconstruction of 2 cervical vertebrae that had collapsed, but even so I can well understand wanting to get further confirmation especially now that it's been suggested by your paediatrician. Mr Cole in Sheffield could be well worth seeing - he was at QMC under Mr Webb and assisted on my surgery. While I have ongoing problems, they are nothing to do with the surgery which had truly fantastic results, and I can say that I would definitely be treated by Mr Cole again in a heartbeat (if anything, they're due to the massive damage done to me by the original surgery which fused me in completely the wrong position and led to severe degeneration and early arthritis - it's the ongoing arthritic process which has caused my current trouble, and surgery couldn't have stopped that).

I hope the info above helps a bit, and I think OT - and physio if you can get it - is a great idea. One other thought which occurs to me is that although I expect they'd be reluctant to do it on a young child (and for as much as I know, it may be that the spinal anatomy is too small on a small child, so do take this with a pinch of salt), perhaps you should suggest to your paedatrician that he should ask whether there is any possibility of an epidural steroid injection. I'm thinking that now that there is confirmation that there are oddities in her spinal canal, they might think that something like that would help if it can be done safely, but as I say I really don't know if they can/do do them on children.

I hope the info above helps a bit :squeeze: I'll probably be back up to QMC for a facet block in a few weeks time (waiting for the letter), so if you'd like, I'll let you know when that is so that if you're around we could meet up :-)

ELLA22
7th June 2007, 03:57 PM
Hi
Thanks Gilly and Titch
I knew that you would have the answers! :squeeze:
It's helpful to have the reports and see exactly where the problems lie. I will consider Mr Cole as Sheffield isn't too far away. I think that they must give 6 lumbar vertebrae to special people! lol
Her pain is much better now we are using the diclofenac but I will mention the epidural suggestion as it will last longer. We've just got to get QMC approval for the physio so I'm going to ring tommorrow when it's a bit quieter and I hope the ot will sort her a more supportive pushchair out.
It would be great to meet up Titch. We live near Donington race track/ East Mids airport so are not far away! Let me know when you get the letter.
Big hugs for William :squeeze: xx

GillyG
7th June 2007, 05:04 PM
Originally posted by ELLA22@Jun 7 2007, 01:57 PM
I will consider Mr Cole as Sheffield isn't too far away.
Well, as you've probably gathered if you've read any of my posts, I think Mr Cole is amazing! He performed my surgery last August and I'm delighted with what he has managed to achieve, given my age and spinal complications. But more than that, I find him an extremely pleasant and approachable man and he does a lot of work with kids at the Children's hospital here in Sheffield. Could be another possible meet up on the cards if you do come up my way......!

Gilly xx