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Nicki
10th October 2005, 10:46 AM
Hello All,

I have been trying to get online for so long to post this with no success!!

Well, we had the appointment at Nuffield on 26thSeptember and it was not good really.

We met with Mr Fairbanks for the first time (we didnt realise it was him until about 10 minutes into the consultation, for which he was apologetic for not introducing himself). I asked him how many degrees Lucy's curve was and was told umm, oh not sure cant really read the xray, looks like 55 degress but could be 45 degress. This was not very reassuring I have to say!!! He then announced that she would more than likely need surgery when she is 12!! He could tell by our faces that we were not expecting this, as when we saw his registrar last time we were told she would wear the brace until she was in her late teens and then surgery would be discussed. We told him this and again he was apologetic and started to back track saying that obviously surgery at 12 years old is not advisable as Lucy is still growing and fusing her vertibre would stop any further growth of her spine etc etc. At this point I wanted to find a stone and hide underneath it!! :cry:

Anyway he sent Lucy for an Isis scan - her first. Which she (and I) found fascinating and her Cobb angles are 23 degrees top and 25 degrees bottom. I have absolutely no idea what this means, I asked the lady who did the scan and she couldn't tell me either!! I looked on the xray myself and Lucy's curve is 45 degrees. If anyone can enlighten me on these Cobb angles I would be grateful.

Sorry if I appear to be moaning and fed up - but I am :D You know when you go for these visits that there is not going to be any good news but even though you know that it still comes as a surprise. Or is that just me?!! :woe: The upside is that Lucy wasn't at all bothered by the meeting which is great.

We have had a bit of a problem with Lucy's brace in the last week though, she has developed a nasty boil on her hip bone so was unable to wear her brace for 5 days, she took it all in her stride but it was very painfull and quite big. Has anyone else experienced this??

We are back at Nuffield on 12 Oct for a brace follow up visit so will update again after that.

Take care out there!!

Love Nicki xx

Jonny
10th October 2005, 05:30 PM
Hiya Nicki

That does sound disappointing :( While I don't doubt Mr Fairbank has high standards of care, his communication here has been very poor.

I'm stunned that he didn't measure the x-ray, either to check the number or measure it himself in the first place. A normal curve measurement, in your case 45 degrees, is the Cobb angle, so if the figures from the ISIS scan were also Cobb angles, there is a major discrepancy. It's more likely that the numbers from the ISIS scan were scoliometer readings, giving a measure of rotation.

It's also impossible to predict that the brace will not successfully hold the curve, unless he's seen significant progression in the brace. The brace certainly has an opportunity to work.

The sore bits are common... as long as the brace isn't too tight, there's nothing really you can do about them (short of surgical spirit) except make sure that the liner is thick enough and covers the sore part. Of course plasters might help. It's also possible it's too loose and rubbing too much. Try not to stop wearing the brace, but of course it can become necessary to give the skin a break. Some redness is normal and it's what the consultant uses to tell that the brace is being worn.

Hope this helps :-) Sorry it wasn't a great appointment!

tonibunny
10th October 2005, 05:59 PM
Hiya, I'll post more later as I am about to rush out, but I just wanted to say that fusing the spine at the age of 12 shouldn't impact Lucy's growth too much. By the age of 10, 80% of the spine's potential growth has already been done. I had my spine fused from T1-T12 when I was ten and it hasn't made me noticeably shorter than I would have been - I'm about 5'3" tall.

BeckyH
10th October 2005, 06:06 PM
i agree with toni, but don't have as much science to back it up with :D when i was in hospital, my surgeon operated on another girl - she was 12 and when we went in was a little shorter than me (i was about 5'6") and once we'd had surgery, she was as tall as me (i'm over 5'8" now) and her legs will still grow :-)

gerbo
10th October 2005, 06:27 PM
EDITOR,I read with interest the article "Imaging in scoliosis". In addition to the radiological techniques described, I would include surface shape measurement as a simple, safe, repeatable, and clinically relevant assessment.

Associated with the bony deformity there is a cosmetic problem; indeed, idiopathic scoliosis is primarily a cosmetic disorder. The first sign commonly noticed by the clinician or patient is an asymmetry of backshape, resulting from axial rotation of the spine and rib cage. Treatment is aimed at the reversal or arrest of the progression of this visible deformity as well as that of the underlying skeletal abnormality.

Quantitative assessment of scoliosis is necessary both to assess the severity of the condition, and to monitor its progression. The Cobb angle is a reasonably consistent uniplanar measure of spinal deformity, but indicates neither the vertebral rotation/rib prominence which causes the cosmetic deformity, nor any associated changes in kyphosis/lordosis, thus representing only a partial record of the overall disease.

Methods of evaluating back shape or cosmetic deformity in scoliosis include measurement of simple parameters such as the height difference between left and right sides of the back during the forward bend test. However, they too attempt to reduce a complex three dimensional shape to a single number which inadequately represents the full clinical deformity. Furthermore, being posture dependent, the consistency of measurement is poor.

An advancement involves optical measurement techniques, with the advantage of avoiding contact with the patient. The Moire fringe technique1 produces an instant graphical representation of the whole back, rather like a contour map, but even a small movement of the subject causes the appearance of the picture to change dramatically. The integrated shape imaging system (ISIS) shape measurement and analysis system2 uses totally safe visible light to scan the back in one second and produces a printed computer analysis of three dimensional backshape within five minutes. Patient posture is not critical and the system can be operated in a normal office environment. An ISIS scan provides the clinician with a repeatable objective assessment of the surface shape of the back in three planes, and consecutive scans can be examined for any indication of progression. Used as a regular screening aid, it has been estimated to reduce the number of spinal radiographs, and thus radiation dose, by as much as 75%. Chief indications for radiographs become at initial presentation to exclude bony anomalies, preoperatively to assess fusion levels, and postoperatively to check instrumentation and fission mass.

Although the exact relation between back surface shape and skeletal deformity is not well defined, surface shape measurements such as ISIS have been shown to be valuable in assessing the progression of a scoliotic curve, the effect of treatment on backshape, and in giving a reliable indication of the need for spinal surgery.3

ROSALIND J JEFFERSON
Specialist Registrar, Department of Paediatrics, Wycombe General Hospital, High Wycombe, UK


Not knowing what an isis scan is I found this on internet, it is clearly a totally different method then xray, only looks on the outside and therefore cannot measure cobbangles, therefore quoted figures must provide a different type of quantification of curve

gerbo

Little Ali
10th October 2005, 09:45 PM
Hi,

Mr Fairbank is my consultant and I just want to reassure you that he is an excellent surgeon! He can be very blunt though and just says it as it is without realising that it's actually a big deal for the people he's proposing surgery to!

I have an appointment with him next week too so I'll report back and we can compare notes!

Good luck with everything! :squeeze:

andrea
10th October 2005, 09:47 PM
Hi Nicki

I'm really sorry to hear your appointment was so disappointing. You're not the only one to want to hear good news even though you expect to hear bad at all!! I think it goes with the territory. I am a bit confused as to why he couldn't read the xray - was the quality bad, or did he not have the necessary tool to hand?

We've recently accepted that Erin will be fused when she's older, although it wasn't mentioned at initial appointments. Toni is right - by the age of 12 she will have achieved most of her adult height, and won't lose much by fusion. I know none of us want to think about fusions on our babies, but it's a good age to get to if surgery is necessary (if that makes sense).

Fingers crossed for a more productive appointment later this week. Please let us know how it goes. My thoughts are with you.

Andrea
x

Jules
10th October 2005, 09:48 PM
Hi
Mr Fairbank is my consultant too, and although as Ali said he is very blunt and matter of a fact about the surgery and your options, he is a wonderful surgeon and he has done an amazing job on me. So there is no need to worry at all.

Love Jules xxx

tonibunny
10th October 2005, 10:25 PM
I had an ISIS scan in the late 1980s when they were first introduced, as they were trialling them at the RNOH. They were developed at the Nuffield and there are very few other places that do them now.

I ought to clarify that whilst a child's spine has reached 80% of its adult size by the age of 10, the child will still have the potential to get a lot taller as most of the growth they have left to do will be in their limbs. I have nice long legs for my height :D

sins
10th October 2005, 10:31 PM
I have to say it's better to be an inch or two shorter, but with a straight spine than to be taller with a crooked one.if my surgeons had operated on my spine when i was 12 it would have been about 65 degrees before surgery and would have been corrected.Instead my surgery was done at age 15 for a 110/120 deg curve resulting in no correction.
Don't worry about possible surgery at age 12! there's quite a way to go and she may well respond yet to the bracing.
Sins

Nicki
12th October 2005, 08:11 PM
Originally posted by Little Ali@Oct 10 2005, 08:45 PM
Mr Fairbank is my consultant and I just want to reassure you that he is an excellent surgeon! He can be very blunt though and just says it as it is without realising that it's actually a big deal for the people he's proposing surgery to!


Hi Little Ali

Thank you - you have reassured me that my initial impression of Mr Fairbanks was wrong!! It is great to hear from others who have him as their consultant and they think he is fantastic.

I look forward to hearing how you get on with your next appointment.

Thanks again!
Nicki

Nicki
12th October 2005, 08:18 PM
Originally posted by andrea@Oct 10 2005, 08:47 PM
I am a bit confused as to why he couldn't read the xray - was the quality bad, or did he not have the necessary tool to hand?


Hi Andrea

Sorry I didnt explain myself properly on my last post. Mr Fairbanks had the xray and the necessary measurements had been done on the xray and the degrees were written on in pen. Mr Fairbanks could not make out what the degrees were as it was a bit unclear. When we went for the Isis scan we were given all of Lucy's xrays. I checked the xray myself as I really wanted to know how many degrees her curve was. I read the xray myself as 45 degrees - it was clear to see when not on the 'light wall' (you know the thing I mean, the thing they put the xrays on! dont know what they are called!!). :???:

Love Nicki

newgirl
12th October 2005, 08:23 PM
Hi Nicki,
Sorry have not been on here in a while and also sorry to hear that you had a disappointing appointment. It is very frustrating to come out of an appointment with more questions than when you went in.
Try not to get too hung up on the fact that he has suggested surgery, we have been told from day 1 that there is a possibility that Niamh will face surgery at some stage, but I have taken the attitude that every year brings more advancements and by the time the reality of surgery does raise it's head who knows what techniques may be in use. Lucy is about 8 now am I right? so who knows what the thinking will be in 4 years time?
Take care
Nicola

Nicki
12th October 2005, 08:27 PM
Originally posted by sins@Oct 10 2005, 09:31 PM
I have to say it's better to be an inch or two shorter, but with a straight spine than to be taller with a crooked one.
I totally agree! We were just very confused as we were told previously that Lucy would have the brace until she was at least 16 and then surgery would be discussed. We were also told (by the registrar) that surgery on a young child was undesirable as quote ' it is a 4 hour operation at least, and they loose a lot of blood' :shock: We were also told that there was a (small) chance of nerve damage to her legs. So as you can see we were not expecting to be told she would most probably require surgery at 12 years old!!!

Even so, we want what ever is best for Lucy and if that means fusion then thats the way we will go, although its not something I like to think about for too long. I havent got my head buried in the sand, I just try not to dwell on it for too long!!

Love Nicki

Nicki
12th October 2005, 08:32 PM
Originally posted by newgirl@Oct 12 2005, 07:23 PM
Lucy is about 8 now am I right? so who knows what the thinking will be in 4 years time?

Hi Nicola

Thats the way I like to look at it as well, things advance and change all the time dont they?

Hopefully we will get the desired results from the brace and we may not have to face the question of surgery - you never know!!

Love Nicki

Nicki
12th October 2005, 08:39 PM
Hello All

We had our follow up appointment at the Orthotics Clinic today (we see Joanne Mitchell) and all is well.

Joanne shaved off the offending piece of brace that was digging into Lucy's legs so hopefully she will be a bit more comfortable at school.

She also padded the brace a bit more on one side as she saw that Lucy's head was slightly off centre, so hopefully this bit of padding will push her over the required amount.

Lucy is finding it a bit uncomfortable with this bit of padding, but I am sure it will feel better when she has got used to it.

Joanne said that Lucy was doing well and doesnt need to see her for 6 months :clap: Horaay no more Nuffield until April 2006 as Mr Fairbanks doesnt want to see us till then either. Its a nice feeling to know we dont have to go back, but it is also a bit scary to know that Lucy will not be seen and it is totally down to us to notice if anything changes.

Thanks Gerbo for finding that information on the internet, it was interesting.

Lots of love
Nicki

Gadget
12th October 2005, 09:23 PM
Sorry to hear you were disapointed but i'm glad you are feeling more reassured now. Hope that Lucy feels more comfy soon.
G xx

RosieRich
17th October 2005, 10:15 PM
Hi Nicki
I'm glad the bracing is going well, we have Joanne as well and she's really nice.
How is Lucy getting on with the extra padding as when Joanne tried it with Megan's brace she just couldn't tolerate it and we had to take it out.
The ISIS scan sounds interesting, we'll have to ask about that at our next visit.
Enjoy your nuffield free months!
8)

Nicki
20th October 2005, 10:07 AM
Originally posted by RosieRich@Oct 17 2005, 09:15 PM
How is Lucy getting on with the extra padding as when Joanne tried it with Megan's brace she just couldn't tolerate it and we had to take it out.

Hi Rosie

Lucy seems to be ok with the extra padding, it was a little 'weird' feeling at first but she hasnt mentioned it since. Hopefully it will keep her straight for the next 6 months.

Even though we dont have to go back and life is jogging along, scoliosis is a massive part of everyday life. I feel as though sometimes it consumes my every thought - do you find that? I am forever watching Lucy when she hasnt got it on checking to see if the curve has changed. I also keep an eye on Lucy's younger sister Phoebe who is coming up for 6 (Lucy was 6 1/2 when we noticed her curve). Obviously the kids dont know I am checking them but I do wish I could ease off a bit!!! :hammer:

How is Megan getting on? Is she still in her original brace? We were told Lucy will probably be measured for a new one in April.

Take Care
Nicki

RosieRich
26th October 2005, 09:28 PM
I know exactly how you feel, I'm forever looking at backs now!
Megan is still in her original brace although I've just had to make an appointment for her earlier than expected as the brace isn't sitting quite right so I think she must have grown or changed shape. Just when I though we'd have a few Nuffield months!
:wave:

Little Ali
28th October 2005, 08:00 PM
Hi Nicki!

I remember the days when I had to wear a brace! I don't envy Megan!

It's good that you don't have to go to Orthotics or to see Mr Fairbank for another 6 months. It's always a good feeling :bounce:

I've written about my appointment on 17th October with Mr Fairbank in General if you wanna have a squiz!

Take care!