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newgirl
5th December 2006, 09:01 PM
Hi,
As some of you know we have had our first appointment after Niamh was taken out of cast and put into a brace.

Basically, her curve has lapsed back to where we started at approx 32*.
Consultant feels that she has a non-progressive benign curve and treatment is to leave her in brace, review in 6 months and if no change leave in brace for another 6 months and then nothing.

I am very disappointed, mainly because her curve was reduced to about 14* in cast and foolishly perhaps I felt that this was an indication that her curve was improving but this does not seem to be the case. I feel now that we are in a kind of limbo, to me a 32*+ curve is a significant curve but it does not fall into the surgery category so therefore the opinion seems to be we have to live with it.

So for any of you experts out there can you suggest any words of wisdom? Are you aware of any tried and tested treatment regimes for non -progressive curves? Is there any evidence that continued casting could make a difference?

I am going to organise a second opinion but would like to find out all I can first.
N

Little Ali
5th December 2006, 09:27 PM
I'd say to get a second opinion. It can't hurt and then you can feel reassured that you've done everything you can. Good luck!

tonibunny
6th December 2006, 01:18 AM
Do get a second opinion.

I'd be inclined to try her with a brace for 6 months, but KEEP HER IN BRACES if the curve holds. I certainly wouldn't take a risk on leaving her unbraced just because the curve doesn't get worse in a brace for 6 months. That's bonkers.

I suppose, if the curve held in the brace, you could try slowly weaning her out of the brace, starting by having her wear it only 12 hours a day, and having a check-up after 3 months to make sure that's not doing any harm. 6 months is a long long time for a little child to go without being checked on, especially if she's suddenly been taken out of braces/casts!

If the curve worsens at all after the initial six months of bracing, I'd then go straight back to casts.

Good luck with it all! :hug:

crkcallie
6th December 2006, 02:13 AM
I would get a second opinion.

Sealy
6th December 2006, 04:30 AM
Originally posted by newgirl@Dec 5 2006, 02:01 PM
Hi,
As some of you know we have had our first appointment after Niamh was taken out of cast and put into a brace.

Basically, her curve has lapsed back to where we started at approx 32*.
Consultant feels that she has a non-progressive benign curve and treatment is to leave her in brace, review in 6 months and if no change leave in brace for another 6 months and then nothing.


The consultant's interpretation makes no sense whatsoever! If her curve lapsed to pre-casting numbers, how can he draw a conclusion that it's a non progressive benign curve ???? A non progressive benign curve is a resolving one and this is not the case since the curve has *not* gone down. Perhaps he means it's not a malignant progressive curve. Benign progressive curves progress at a slower rate than malignant curves but they do progress to significant levels with time. What is the RVAD number ? Has that number gone down at all ? The fact that Niamh has been in casts for a little over a year with no apparent correction would imply that there is something else going on....has she had an MRI ? If so, take it to a pediatric neurosurgeon and make sure there is nothing else contributing to her scoliosis and that it is indeed "idiopathic".

If it were my child, I would be hesitant to put her in a brace at this point in time since she is pretty close to the 40 degree mark and once curves progress to that level, braces do little to hold. Is this doctor refusing to cast Niamh ? How old is she again ? If she is under the age of 3, reconsider plastic bracing since a growth spurt will put her in surgery category.


sealy :squeeze:

newgirl
6th December 2006, 09:15 PM
Hi,
We are getting a second opinion but it will be Jan before the consultnat can see us.


Perhaps he means it's not a malignant progressive curve.* Benign progressive curves progress at a slower rate than malignant curves but they do progress to significant levels with time.
Sealy do you know of any research that implies this? We were never actually given the RVAD number but I do know that he measured it as practically the same on both sides of her spine which was good.


The fact that Niamh has been in casts for a little over a year with no apparent correction would imply that there is something else going on....has she had an MRI ?
We had an MRI done when she was a year which showed no abnormality other than the level of her spinal cord being slightly lower than normal.


If it were my child, I would be hesitant to put her in a brace at this point in time since she is pretty close to the 40 degree mark and once curves progress to that level, braces do little to hold.* ** Is this doctor refusing to cast Niamh ?* How old is she again ?* If she is under the age of 3,* reconsider plastic bracing since a growth spurt will put her in surgery category.
Yes he is basically refusing to treat her with casts as he feels it is overtreatment. She has just gone 3 and yes I am really worried that we are very close to the surgery category so wnat to do the best we can to avoid that.

Thanks
Nicola

Edited to point out I made a complete mess of the quotes
[2nd edit by titch to say hope that fixes it!]

Thaleias spirit
6th December 2006, 09:28 PM
Nicola, I'm really sorry that ye are in this situation. I really wish there was something I could advise but I just don't know enough about this. I just hope somebody can give you something to go on that maybe you can get more help with all this.
:squeeze:
chele

Sealy
6th December 2006, 10:35 PM
Originally posted by newgirl@Dec 6 2006, 02:15 PM


Sealy do you know of any research that implies this? We were never actually given the RVAD number but I do know that he measured it as practically the same on both sides of her spine which was good.

We had an MRI done when she was a year which showed no abnormality other than the level of her spinal cord being slightly lower than normal.




A good article to read is "Infantile Idiopathic Scoliosis" by Min Mehta in the Downloads section. In this article, she discusses the distinction between malignant progressive, benign progressive and resolving scoliosis. I have never come across the consultant's definition of non progressive benign scoliosis, unless he means resolving.

Assuming the consultant's calculations are correct, the RVA values on the convex and concave side are identical so that would mean that the RVAD is zero - which is very good!!!! :niceone: I would have the MRI checked by a pediatric neurosurgeon to be absolutely sure that there is nothing contributing to her scoliosis - normally these reports are read by radiologists who often times miss "things". You mention that her spinal cord is slightly lower than normal, did they discuss the possibility that she may have a tethered spinal cord ? Below is something I found on Tethered Spinal Cord Syndrome.

Nicola, I hope I'm not overwhelming you with too much information but I can see that you're at a crossroads. I hope you can decide on the right path. :squeeze:

What is Tethered Spinal Cord Syndrome?

Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. The course of the disorder is progressive. In children, symptoms may include lesions, hairy patches, dimples, or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; low back pain; scoliosis; and incontinence. Tethered spinal cord syndrome may go undiagnosed until adulthood, when sensory and motor problems and loss of bowel and bladder control emerge.

gerbo
7th December 2006, 09:11 AM
for what it is worth (i have no knowledge of infantile scoliosis), it seems to me that if she coped well with a cast before, and it gave her a better correction, there is no real advantage in using a brace, which might be more uncomfortable, might give less correction, might be taken of more often, might not get adjusted (changed) as much as a cast, so will be less likely to be beneficial. (Does this make sense Celia?? Feel free to correct me)

DublinPauline
7th December 2006, 11:07 AM
Nicola, I would tend to err on the conservative side and would prefer to stick to casting if it seems to be holding the curve in place. That being said, I am not very familiar with infantile scoliosis (I have congenital).
You are definitely right to get a second opinion from another specialist since this is such an important decision for you to make, particularly when Niamh is young enough to adjust to wearing a cast again.

sins
7th December 2006, 11:48 AM
Hi Nicola,
I agree that casting is worth persisting with if it's holding the curve.As for the bracing, I think your consultant is one of the few who even considers bracing worthwhile at all.Looking at other cases, like netty's son with a small curve again and the consultant swears that bracing doesn't work,you're going to have to be very assertive to get non surgical treatment.
I hope your second opinion yields some assistance.
Alternatively, you might tackle him on the subject of growth rods at some stage.I understand they're being used with some success in your hospital???
There's also the possibility of getting a UK opinion as Netty did.There's a lot you can do, so I guess just take it step by step.If your consultants abandon all efforts at treatment, you might try Gerbo's orthotist in Sheffield.
Something has to be better than nothing at all.
Sins

gerbo
7th December 2006, 07:28 PM
Originally posted by gerbo@Dec 7 2006, 08:11 AM
for what it is worth (i have no knowledge of infantile scoliosis), it seems to me that if she coped well with a cast before, and it gave her a better correction, there is no real advantage in using a brace, which might be more uncomfortable, might give less correction, might be taken of more often, might not get adjusted (changed) as much as a cast, so will be less likely to be beneficial. (Does this make sense Celia?? Feel free to correct me)
it is my assumption that in principle there is no difference between casting and bracing, but that casting works better because

1) it is worn all the time
2) gives a more consistent correction (not dependent on straps being fastened)
3) its gets changed more regularly, so more chance to get a better and progressive improvement.

Is that what others think??

tonibunny
7th December 2006, 07:36 PM
All that, plus the casts are put on under traction, and even though the braces are moulded from casts made in the same way, I really don't believe that they can apply the same amount of distractive force as a cast.

Sealy
7th December 2006, 08:04 PM
I absolutely agree with Toni and Gerbo! I think the problem for Nicola and especially Niamh is finding someone to cast her. I don't agree with the consultant's views that Niamh is being over treated since her curve bounced back to pre casting numbers in a very short period of time. If anything, the casts have prevented further deterioration of a progressive curve. I would definitely followup with MRI because if there is an underlying cause to the scoliosis no amount of bracing or casting will correct it.

andrea
8th December 2006, 12:26 PM
Hi Nicola

I'm sorry you find yourself in this position. I can't really add much to what the others have said - you already have a second opinion in place, so you know the path you want to follow. I know that the brace didn't work for Erin and she had to go back into casts, and I'd disagree that this is overtreating her. How can something that works be overtreatment.

I have to go - Erin is shouting at me about something.
Take care
Andrea

newgirl
22nd December 2006, 10:39 PM
Thanks everyone again for all the replies and sorry I haven't been on to reply sooner.
Bit of an update, we had an appointment with the Orthoptist (? sp) on Wed and because we didn't have an x-ray taken with the brace on, they have requested that we get one done and she wants the clinical director of the unit to see Niamh on 8th Jan. Apparantly he is the spinal expert with bracing in the country, so if the brace is not exerting enough pressure to give some correction they will do some adjusting perhaps with pressure pads etc. I am just so glad that they are taking it seriously and want the bracing to work.
We are still going for the second opinion but the more I read up on it I am coming to the conclusion that perhaps casting is not going to offer us anything more. Whilst the curve was corrected in the cast, anytime she was x-rayed out of it her curve was back to where we started. A year in cast has made no difference what so ever. Maybe all we can hope for is that we maintain the current level through expert bracing. :cry:

Thanks again everyone and I hope you all have a lovely Christmas,
Nicola