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andrea
10th June 2004, 07:05 PM
Hi Jonny

I'm new here but thought I'd add a post as my daughter was discharged from the adolescent unit at Stanmore yesterday after being fitted with her first plaster jacket. Yes, it's hot so definitely take a fan!!! Best of luck, hope it all goes well. I've been cruising the forum for the last couple of days, not sure whether to take the plunge and post or not, but thought I may as well join in as it'll be a lengthy process and I'll need all the support I can get I think.

Looking forward to getting to know you all. I might add more posts if this one works - still figuring it out!

Andrea

titch
10th June 2004, 07:22 PM
Hi Andrea,

Really good to meet you :D I hope we can help over time, even if all we can do is listen.

titch

Kaja
10th June 2004, 07:31 PM
Woo!! Newbies are more than welcome :D

Liv
10th June 2004, 07:52 PM
How old is your daughter?

I hope you like it here, Andrea! :welcome:

jfkimberly
10th June 2004, 08:05 PM
Hi Andrea,

Welcome to SSO! Your post worked, as you can see. You should get your daughter on here, too. There are quite a few younger girls whom she might want to talk about her experiences with.

Plaster cast? Did she have surgery? They did casts for me when I was an infant, but I didn't know they did that for older kids.

andrea
10th June 2004, 08:50 PM
Thanks for your welcome messages. I should have said, Erin is 21 months old, so perhaps a little young for chatting yet, although it won't be long! She was diagnosed last month with infantile ideopathic scoliosis and her first xrays showed a curve of 62 degress, hence the speed with which she was put in a jacket. She is adjusting to it really well actually, despite the hot weather. Let's hope it continues.

Thanks again for the warm welcome.
Andrea

jfkimberly
10th June 2004, 09:52 PM
Okay, I guess she's a bit young for SSO, yet. *smile*

I started to walk in a plaster cast. When I learned about it later, I got mad at my parents for letting me do something so dangerous. My mother said she couldn't stop me.

sins
10th June 2004, 10:04 PM
Hi Andrea,
You're very welcome.
So much must have happened over the last month, I can imagine you must be still reeling.It's good to see that she's adjusting so well.
Anything we can do for you just let us know and we'll all be here for you through Erin's treatment, even if you just need to vent some frustration.
She's in an excellent hospital and I'm sure that everything that can be done for her will be.Think positive and things will seem a lot better very soon.
Sinead.

tonibunny
10th June 2004, 10:45 PM
Hi Andrea, welcome! :)

I was diagnosed with a 65/40ish double curve when I was six months old, so I also had plaster jackets from an early age. I was also treated at Stanmore - I even remember being in the nursery part of the Coxen Ward! If it's any comfort to you, the casts never really bothered me because I grew up wearing them. I got Milwukee braces later on, too. I really think it's harder on adolescents that are suddenly faced with scoliosis, than children who grow up with it.

Kimberley, what's dangerous about learning to walk in a plaster cast? I must have done that too.....it never occurred to me that it might ever have been dangerous! :o

Jonny
11th June 2004, 12:46 AM
Welcome Andrea! Actually I thought it was the Coxen ward until at least double figures, but you learn something every day. Hope Erin adjusts to her cast quickly - Stanmore is an excellent place to be treated by all accounts (including mine so far) and she shouldn't go far wrong now it's being sorted.

It's great to have the "cruisers" become "posters" and just as great to know that I will definitely need a fan! Also considering planing a broom handle or something in the shape of a violin neck and doing finger exercises (Schradieck) while I lie there. Something to wile away the long, morphine-enhanced hours.

jfkimberly
11th June 2004, 03:31 AM
Toni,

My cast (and I imagine yours and Erin's as well) went from my hips to my neck... and it was heavy. Imagine an awkward toddler hobbling around with 30 extra pounds on them, and then losing their balance and falling on some furniture. I envision a broken neck.

Marti
11th June 2004, 04:11 AM
but if you were in a cast, wouldn't that keep anything from breaking?

Carly
11th June 2004, 04:53 AM
and how would you grow?

jfkimberly
11th June 2004, 05:45 AM
Martha: The cast stopped at my neck... I just have these visions of a triple-the-normal-weight baby falling down on the edge of a coffee table, and my head stopping while the rest of me didn't. It's really an ugly mental image, but I can't shake it. But nothing happened, and my mother couldn't stop me, anyway. I was a feisty little thing.

Carly: They redo the cast every so often to allow for growth, I guess... I was a baby, so I don't know. I imagine Andrea could tell us more since she has the freshest knowledge of it.

andrea
11th June 2004, 08:36 AM
Hello all

I think I'm getting confused about wards - I thought Coxen ward was part of the adolescent unit? They all seemed to be part of the same ward and because there were clearly teeenagers in there I thought it was. Apparently it's closing down at the end of this week for 2 weeks to allow for some building work to be done, so perhaps patients were in places they shouldn't have been.

Plaster jackets are a bit different now to how they used to be as they are made of fibre glass so are a lot lighter. I've been told that Erin can do absolutely everything a normal toddler does, apart from go near water or sand. I haven't actually weighed her to see how heavy it is, but it might be interesting to do so. She'll go in every 3 months or so to have the jacket changed to allow for growth and (hopefully) the change in her spine. While under the GA, they put her on a traction thingy that stretches the spine, and then they manipulate it to a straighter position before plastering her up. The SHO didn't really seem to be that optimistic that we wouldn't avoid surgery at a later date, but I remain hopeful.

Anyway, I'm rambling now.
Thanks again for all your messages of support
Andrea

jfkimberly
11th June 2004, 09:21 AM
Andrea,

Even if surgery is called for down the line, the longer they're able to put it off, the better Erin will be. I really hope the plaster jacket works for you.

I had my first surgery at 10 months (to be halted and completed a month later, due to complications). I had another surgery at 18 months, and just monitoring since. I'm 30 and doing okay now, but if my curve hadn't progressed so rapidly as an infant so they could have waited on the surgery, I would probably have considerably more lung capacity now.

I really wish I'd been born about 2 decades later than I was. Things are so much better now, it would seem. I hope for the best for Erin, but I know she'll do fine. You two have so many things going for you... great facilities, modern procedures, and even the Internet for support (I love SSO!). So many things my mom didn't have when she was trying to get through it all with me.

Well, okay... my mother had access to the best physicians available at the time at no cost to her. But medical technology has changed so much since then!

Kayla
12th June 2004, 01:48 AM
Hi Andrea sorry I didnt welcome you earlier! but WELCOME!!! hehe

tonibunny
13th June 2004, 10:30 PM
Kimberley, yes my cast went from hips to neck - though they brought in the lighter "scotchcast" plaster jackets when I was about 6. I vividly remember being put into traction to have the plaster applied....they did this without a GA as soon as I was old enough to handle it. There are pics of this procedure on this website (though it's not in English):

http://www.turpijn.demon.nl/scoliose/html/home.html

The "Scotchcast" plasters were soooo much lighter than the old "pot" ones that were solid plaster of paris. I remember them having to remove those with an ordinary handsaw, such as you would use to cut a plank of wood in half....but again, luckily, when I got a bit older they brought in the new little strimmy saw that stops on contact with anything soft, so it was safer even though it was a lot noisier!

:D

BarmyArmy
15th June 2004, 11:19 AM
Hi Andrea welcome to our wonderful wacky world :wave:

I hope everything goes well for Erin :D

christine
11th August 2004, 04:14 AM
hi all

I am new to the site
i really new advice my son is 15 months old and i have many questions....
i want to make sure this goes thru
can you read me?????

Christine

christine
11th August 2004, 04:26 AM
i am so happy to be able to post with you
Has anyone been in a cast for a while?
I need to know how it works.
I am so desperate for info and so happy to be able to chat with you
Chrisitne

jfkimberly
11th August 2004, 05:03 AM
Hi Christine,

We can see you, and I want to welcome you to SSO! I'm sorry your son has scoliosis, but I'm so glad you found us. Please post your questions, and we'll do our best to answer them.

Toni posted a very good address two months ago where there are pictures of a plaster cast being applied to an adolescent patient. It's at http://www.turpijn.demon.nl/scoliose/html/home.html (click on "Mijn gips tractie" in the menu on the left... the pictures are clickable for a larger image).

I had successive casts when I was infant, but my scoliosis progressed rapidly despite them, and I ended up having my first spinal surgery at 10 and 11 months of age (I had a complication during the operation, so it was stopped and restarted a month later), and a second operation at 18 months. As I stated earlier, I learned how to walk in my hip-to-chin plaster cast... but not until about 17 months.

andrea
11th August 2004, 09:22 AM
Hi Christine

Sorry to hear about your son. My daughter Erin is nearly 2 and has been in a cast for 2 months. Her curve was measured at 62 degrees. She is being treated at RNOH in Stanmore.

I'll try to answer any questions you have - fire away - although Toni is probably a greater source of info than me. I'm sure she'll be on later to answer some too.

Andrea

newgirl
11th August 2004, 01:58 PM
Hi Christine,
I have an almost 11 month old who has recently been diagnosed with a 37 deg curve. We are having an MRI in 2 weeks time and she will probably be put in a cast after that, although we will not know for sure until we see the surgeon in Sept. I am afraid I really do not have much info to pass on except to let you know that there are others out there as confused and worried as yourself.
Keep in touch
N

tonibunny
11th August 2004, 02:22 PM
Hiya chaps,

I'm just in the middle of writing an article giving information on plaster casts for infants....bear with me, I spent ages writing one a few nights ago and lost all my work by accident!

Toni xx

christine
11th August 2004, 05:41 PM
great!!!!!
I am so happy I am finally able to talk with people doing this in the UK
I am still trying to figure out how to post on the site. I wrote out an entire page and lost it so I am going to try again with this and if it works i will send questions ( i have so many)

christine
11th August 2004, 05:50 PM
hey Toni you are on the Us site also (how nice to be able to talk to you again)
You have been so helpful on that site.

In the US plaster jackets are NOT used by the top spinal docs and orthos. I am trying to figure out the underlying reason. (medically)
Do any of you have any ideas?

Has your docs told you of any negitive effects of casting? or long term complications?

Did your docs say why they do casting over bracing ...
I am trying to figure out why they do not do it here in the US....
I am seeking out alternative doc to do this for my son in Sept if they think it is ok for him but I really don't understand why it is not commom practice here?

My son was dignosed in april (11 months )and had a MRI which was negitive
his curve was 30 degrees with and RVAD of 25-30 in may 2004 and last week he was in a brace (Kailbus) and the curve was 30 still (so probably worse out of brace)
Have any of you heard of this brace before.
I could talk your ears off so I will post more later

SOOOOOO nice of you all to talk the time for me
Christine
:hammer:

andrea
11th August 2004, 08:10 PM
Hi Christine

I just wrote a really long post and lost it, so here I go again.....

Glad that you've come back with your questions - it really is difficult to find consistent, reliable information out there. i'm afraid I don't know anything about their techniques in the US. Usually the US is way ahead of us over here in terms of medical advances etc.

The reasons I was given for Erin being in a cast rather than a brace was that the cast is moulded to the body and therefore maintains the pressure more consistently than a brace. I wasn't given an option about her treatment. When the doctor saw her, he said he wanted her in a cast as soon as possible. We weren't even allowed to go on our annual holiday as he wasn't willing to wait for 2 weeks until we got back. Fortunately our insurance paid out and we have another planned.

Erin's cast applies 3 pressure points to her spine. Imagine if you were trying to straighten out a wonky stick - you'd put 2 fingers on one side and another finger on the other side in the middle to push the wonky bit in line with the rest of it. The principle is exactly the same for her scoliosis. The cast isn't tight everywhere. In fact, I can see about 2 thirds of the way down her back, but it keeps the pressure on these points no matter what she's doing - playing, sitting, sleeping etc.

Your son sounds like an ideal candidate for casting, if you ask me. His curves aren't too severe, and fall within the range that casting is most commonly (if you can call infantile scoliosis common) used for. Erin is above this range, so I will wait and see whether an improvement can be made.

I'm afraid I haven't heard of the brace that your son is in. Could you post some pics in the member galleries so we can see what it looks like? All my experience thus far is with casting, so Toni is no doubt better placed to give you more information about it.

Please do keep in touch.

TC
Andrea

christine
17th August 2004, 02:44 AM
Originally posted by jfkimberly@Aug 10 2004, 10:03 PM
Hi Christine,

We can see you, and I want to welcome you to SSO! I'm sorry your son has scoliosis, but I'm so glad you found us. Please post your questions, and we'll do our best to answer them.

Toni posted a very good address two months ago where there are pictures of a plaster cast being applied to an adolescent patient. It's at http://www.turpijn.demon.nl/scoliose/html/home.html (click on "Mijn gips tractie" in the menu on the left... the pictures are clickable for a larger image).

I had successive casts when I was infant, but my scoliosis progressed rapidly despite them, and I ended up having my first spinal surgery at 10 and 11 months of age (I had a complication during the operation, so it was stopped and restarted a month later), and a second operation at 18 months. As I stated earlier, I learned how to walk in my hip-to-chin plaster cast... but not until about 17 months.
Hey there

I am not sure what your name is but thanks for replying.
So you had a plaster cast and it still progressed? When was it done?
How many surgeries have you had?
HOw are you now?
It must be difficult but I thank you for your advice.

Anything you can recommend?
I have a 15 m old boy with a 30 degree curve and the docs only want to brace him

I will put a picture of th brace on the site this week so you can see it and let me know what you think

Thanks any info is great.
Christine :rox:

christine
17th August 2004, 02:54 AM
Originally posted by andrea@Aug 11 2004, 01:10 PM
Hi Christine

I just wrote a really long post and lost it, so here I go again.....

Glad that you've come back with your questions - it really is difficult to find consistent, reliable information out there. i'm afraid I don't know anything about their techniques in the US. Usually the US is way ahead of us over here in terms of medical advances etc.

The reasons I was given for Erin being in a cast rather than a brace was that the cast is moulded to the body and therefore maintains the pressure more consistently than a brace. I wasn't given an option about her treatment. When the doctor saw her, he said he wanted her in a cast as soon as possible. We weren't even allowed to go on our annual holiday as he wasn't willing to wait for 2 weeks until we got back. Fortunately our insurance paid out and we have another planned.

Erin's cast applies 3 pressure points to her spine. Imagine if you were trying to straighten out a wonky stick - you'd put 2 fingers on one side and another finger on the other side in the middle to push the wonky bit in line with the rest of it. The principle is exactly the same for her scoliosis. The cast isn't tight everywhere. In fact, I can see about 2 thirds of the way down her back, but it keeps the pressure on these points no matter what she's doing - playing, sitting, sleeping etc.

Your son sounds like an ideal candidate for casting, if you ask me. His curves aren't too severe, and fall within the range that casting is most commonly (if you can call infantile scoliosis common) used for. Erin is above this range, so I will wait and see whether an improvement can be made.

I'm afraid I haven't heard of the brace that your son is in. Could you post some pics in the member galleries so we can see what it looks like? All my experience thus far is with casting, so Toni is no doubt better placed to give you more information about it.

Please do keep in touch.

TC
Andrea
Thanks Andrea

It seems like the brace I have my son is applies the same idea. It pushes in 2 places on the rib hump and the hip to pull him strighter. The only plroblem is I have to take it off to change his diaper and to change his clothes which might take away some of the effect. I am wondering if your doctor told you guys about any negitives to casting on terms of the ribs growing? or long term ssues? Since he did not give you any other opitons I hope to get him into a cast it seems like such a better treatment. I worry that I might be running out of valuble time. How old is you daughter? The pictire are so cute, she is adorable.
what was her curve at diagnosis. What is your GP's prognosis for her spine?
Sorry to be so intrusive.

Thanks for replying and I will write back soon I will post the pics this week. Can you look in the site from the US they are in the photo's section there. while if figure you how to put them on this site
Talk to you soon hopefully
It is so great to be able to talk to you
Sorry it took me so long to post
Christine :squeeze:

jfkimberly
17th August 2004, 04:08 AM
I am not sure what your name is but thanks for replying.
Sorry, Christine... I should have introduced myself. My name is Kimberly.

So you had a plaster cast and it still progressed? When was it done? How many surgeries have you had?
I was born at the end of September, 1973, with congenital scoliosis. It was already pretty severe at birth, and progressed even with casting.

My first surgery was started at 10 months, but I arrested during the procedure, so they had to stop to revive me. It was a month before they tried again. My first successful fusion operation was at 11 months, and they used donated (cadaver) bone because I didn't have enough to harvest from my own skeleton.

My second surgery was at 18 months, and in this one they used my own bone. I don't know what my curve was before the surgeries, but I found a radiologist's report from when I was six years old which said that my post-fusion thoracic curve was 60 degrees. That's the only recorded measurement I could find in my chart, but I just had a new xray done on July 23rd. Click here to see it. (http://www.scoliosis-support.org/modules/myalbum/viewcat.php?cid=10) I have an appointment with a local scoliosis specialist on September 14th... my first scoliosis exam in almost 10 years.

How are you now?
Because of my extremely early fusion and what was originally a severe curve, my lung capacity is very restricted (about 30-35%). I haven't had any treatment for scoliosis since the surgery at 18 months, but I was monitored by the scoliosis clinic as I grew up, and I was also followed by the pulmonology department until I was no longer eligible for insurance through my dad (last checkup was at 22 years).

I just got dependent status (due to disability) and am back on my dad's insurance, so now I'm in the process of consults for pulmonology and orthopaedics. My goal is to have revision surgery to further correct my curve and hopefully improve my lung function. A sleep study has just shown that I am experiencing Nocturnal Hypoventilation (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=358), and I'll start using a CPAP at night soon. The ordering physician suggested that after surgery the CPAP might no longer be necessary.

On a brighter note, my case was exceptional. Your son's case is a lot better than mine, because he's 15 months old and his curve is only 30 degrees. And despite the severity of my early curve and surgeries I grew up to live a fairly normal life, so your son can expect even better.

It must be difficult but I thank you for your advice.

Anything you can recommend?
Be proactive. Don't be afraid to ask for something that you want for your son... I'm not up on the cast vs. brace debate (Tonibunny can help you out there), but if you decide you want something different than you're getting, speak up. Oh, and do everything you can to control your son's curve, and put off fusion for as long as you can. At 30 degrees and at his young age, you might look in to Vertical Body Stapling (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=432) for him.

Whew. I'm done talking for now. I'm sorry this is so long.

-Kimberly

andrea
17th August 2004, 12:49 PM
am wondering if your doctor told you guys about any negitives to casting on terms of the ribs growing? or long term ssues? Since he did not give you any other opitons I hope to get him into a cast it seems like such a better treatment. I worry that I might be running out of valuble time. How old is you daughter? The pictire are so cute, she is adorable.
what was her curve at diagnosis. What is your GP's prognosis for her spine?


Hi again Christine

I wasn't given any negative information with regard to the ribs growing or anything else for that matter, although I have myself had concerns with regards to this which I shall raise at the next casting appointment. Part of me thinks that these doctors know what they are doing and I have to trust them, but the mum bit of me feels I have to question everything. Don't worry that you're running out of time - he is in a brace which should prevent the curve from worsening, so you have time to consider the options available to you. He is still young and has a great prognosis.

Erin will be 2 a week tomorrow and her curve at diagnosis was 62 degrees. The first casting reduced this to 38 degrees and her last check was measured at 42 degrees so it hasn't worsened considerably, although hasn't got better either :-?

My doctor is still hopeful that we will correct the spine without surgery and will continue to improve the correction at each casting. He said that even with such a severe curve, he has seen it be corrected in children before and has high hopes for Erin. He said that if we were "really unlucky" we may have to consider surgery, but not until she is older. I'll worry about that then.

Hope this helps in your quest for information. Keep asking....

Love
Andrea

christine
20th August 2004, 02:40 AM
hey Andrea

I am so tired I though I would gather my questions for tomorrow then post them
How did you get the picture of your angel on the site like that ( the one that is on each post)

Did you get to see the kaibus brace on the siteyet?
I am glad that they did not give you any negitive side effects with the cast that makes it easier. I still can't figure out what my doctore is so aganist doing it!
I know it will help you and I hopefully will be able to meet with a Doc that will agree
to do it if it is in my son's best intrest. I really am getting tired of this brace though.

I will write back to you and kinberly this weekend
Thanks so much for listening and chatting

Talk to you soon


christine :monkey:

andrea
22nd August 2004, 02:34 PM
Hi again Christine

I had a look on the site at the brace - as you say, it seems to work by putting pressure on the curve to pull it in, similar to the cast. Is it tight? Do you feel it it putting enough pressure on it to work? I don't really know the advantages of using this kind of brace over a cast - I've never seen one before - so can't really offer any advice. Your little boy is a cutie though.

You can add a picture (avatar) in your profile. There are options on the toolbar on the left to amend your account, and then you can upload a photo from your computer.

Hope to hear from you again soon
Andrea

newgirl
26th August 2004, 10:12 AM
Hi all.
Well Niamh had her MRI on Tues and we should be getting her results on Monday week. Had to get them to bring her appointment forward again as I think the curve is noticably worse, although it may be due to the fact that she has grown a lot in the last couple of weeks.At least I am hoping that is the case!
We are trying to compile a list of questions to ask at the next appt, does anyone have a list or can you think of questions we should ask at this stage?
We are presuming that she will be put in a cast, although they did tell us that a decision would not be made until the Autumn, with a 37 deg curve that could be getting worse am I making too much of a presumption?
I have seen a lot of people mentioning a RVAD curve, what is this, is this a measurement we should be asking about?
Sorry for all the questions, just want to be really prepared when we meet consultant next!!
Hope everyone is well,
N

andrea
26th August 2004, 09:59 PM
Hi N

I don;t feel I can be of much help I'm afraid, but I wanted to reply. I don't know that an RVAD is - I gather it is a measurement used to assess whether the curbe is progressive or not, but I haven't come across it before. i don't know if we use it in the UK or not.

I'm a bit at a loss as to questions too - I guess you need to know how likely the curve is going to progress, what the options for treatment are, what their hopes for correction are, what the overall long-term prognosis is, how long she will be in a cast for, how often will it be changed, how soon will you know if it's working, how often will she be xrayed, are there any negative effects to being casted.

I'm sure there's more, but it's difficult when you're trying to think of them all.

Keep in touch with how it's going
Andrea

sins
27th August 2004, 11:01 AM
http://www.orthoteers.co.uk/Nrujp~ij33lm/Orthpaedspine.htm

Check out this link.In the middle of the article you will find the definition of RVAD.
Good luck with the results of the MRI scan.It's a good thing to have brought forward your appointment if you feel you can see a progression.
I always trust a mother's instinct 100%.Push for the casting if you feel that things are getting worse.
Sinead

newgirl
30th August 2004, 02:03 PM
Hi,
Sinead thanks for that link, it made some interesting reading.
Will keep you updated next week, fingers crossed that it hasn't progressed.
Nicola

christine
17th September 2004, 02:55 AM
Rib-vertebral Angle Difference (RVAD) of Mehta - is the difference between the angle formed by a vertical line through the centre of the apical vertebral body on an AP film and the rib on the convex side and the same angle on the concave side. RVAD of more than 200 or overlap of the head of the rib over the vertebra are associated with a high likelihood of progression.

The RVAD is important becasue the likelhood of progreesion is shown by this....


Hi all I am sorry I have been gone for so long I went to a Doctore to ask about casting my son. They obtained x rays and the brace is holding him at a 8 cobb and RVAd of 1 ----lying down so they wanted to hold off because they felt the brace was doing what the cast would. Why do casts if they ell the brace is doing it's job...I have not heard of any brace making this lkind of a differnce how you?

How is everyone doing?
Christine

christine
17th September 2004, 02:59 AM
Originally posted by newgirl@Aug 26 2004, 03:12 AM
Hi all.
Well Niamh had her MRI on Tues and we should be getting her results on Monday week. Had to get them to bring her appointment forward again as I think the curve is noticably worse, although it may be due to the fact that she has grown a lot in the last couple of weeks.At least I am hoping that is the case!
We are trying to compile a list of questions to ask at the next appt, does anyone have a list or can you think of questions we should ask at this stage?
We are presuming that she will be put in a cast, although they did tell us that a decision would not be made until the Autumn, with a 37 deg curve that could be getting worse am I making too much of a presumption?
I have seen a lot of people mentioning a RVAD curve, what is this, is this a measurement we should be asking about?
Sorry for all the questions, just want to be really prepared when we meet consultant next!!
Hope everyone is well,
N
hi newgirl

Hold old os you child?
When did you notice the curve?
how did the MRI go?
Are you from Europe and see MD there?

I would ask the doctor what he fells the prognosis is and how he intends to treat her.
I wonder if you have had your appt yet?
What thr RVAD is?
What kind of curve is it? a singel or double curve?

Hope this helps
Christine

christine
17th September 2004, 03:01 AM
Originally posted by andrea@Aug 26 2004, 02:59 PM
Hi N

I don;t feel I can be of much help I'm afraid, but I wanted to reply. I don't know that an RVAD is - I gather it is a measurement used to assess whether the curbe is progressive or not, but I haven't come across it before. i don't know if we use it in the UK or not.

I'm a bit at a loss as to questions too - I guess you need to know how likely the curve is going to progress, what the options for treatment are, what their hopes for correction are, what the overall long-term prognosis is, how long she will be in a cast for, how often will it be changed, how soon will you know if it's working, how often will she be xrayed, are there any negative effects to being casted.

I'm sure there's more, but it's difficult when you're trying to think of them all.

Keep in touch with how it's going
Andrea
Has anyone asked the doctors about negitiive effects of casting?

A doctor we saw said the the old casts could cause chest wall deformities but the casts they use now have room for the ribs to move so it is not as much of a problem...

christine
17th September 2004, 03:03 AM
Hi andrea

How is Erin doing?
When is her next cast change?
Hope she is doing well
Christine :squeeze:

Amazed Jean
17th September 2004, 05:09 AM
Hi parents of little ones. I'm fairly new to the site but I am 53 years old and I just want to say to the parents out there with children that have scoliosis. Be your child's advocate, ask questions, ask questions and ask questions! Carry a note book. Take notes. Write down what the doctor's say. Ask more questions. Stand in front of the door and don't let the doctor out of the room until you are done asking questions. As soon as you leave the room start writing down more questions and observations. If you don't understand something ask. And never just beleive one person and go along with whatever. Get more opinions. All this I say because we didn't as I was growing up. It was a different time and doctors were never questioned. Above all one did not keep the busy man waiting. Now I have mega problems because we were quiet and went blindly along watching something(my spine) go to hell in a handcar as it were. My Mom is still alive at 85 and she still crys about not being brave enough to question the doctor. She said she would just go home and go off and cry after her kids were in bed because she was stupid. Now there are lots of places for information -just keep asking and guess what ? So are we now. Oh and God love ya.

christine
18th September 2004, 02:29 AM
Thanks Amazed

I go into the office with that attitude and they somehow make me feel that they are more in control becasue I NEED them......
I t is very frustrating.
How is your scoisosis now? are you or have you had surgery?
What kind of treatment did you get growing up?
I am trying to get info on treatment early with plaster jackets but they do not really offer this as standard care in the US......
I have a 16 month old son who is in a brace but it seems to be holding him at an 8 degree cobb rvad of 1 down form 30 degree and rvad of 29
So I am not sure what to do Just gathering as much info as I can. If it gets any worse I hope they will put him in a corrective jacket i just wonder if it will resolve if they put him in it now?????
Thanks
Nice to chat with you
An thanks for the strong support
Christine

Sealy
20th September 2004, 07:25 PM
Christine,

You're doing great. I know the unknown is very scary - trust your inner instincts. I know that being in a cast would probably cure your son completely at this point - but remember, that casts are worn until the RVA falls to zero or thereabouts. Your son's RVA is pretty close to zero right now. Make sure that he continues to wear his brace and see where his RVA is four to six months from now. Your son could be one of the lucky few in the progressive category that does resolve with bracing. If anything, you should be celebrating right now !!!! You have reason to rejoice !!! I don't think your doctor is trying to pull the wool over your eyes. Just my 2 cents.

newgirl
27th September 2004, 01:51 PM
Hi All,
Really sorry have not been on in a while, got caught up in other things.
We got really good news from our appointment, the MRI was clear and when they did the x-ray the curve seems to have reduced. Certainly the RVAD has reduced so they are holding off putting her in a cast until they review her again in the beginning of December. The consultant seems to think that there is a very good chance that casting may not be necessary, as her back can look really straight if she lies on her tummy and looks up or if she stands. He was very reassuring in that she will be followed up very closely, for many years and if casting is required it will be done. he is just reluctant to put her in now as it is improving despite a huge growth spurt since her last x-ray.
Thanks for all the replies, Christine we are based in Ireland, so treatment does seem to be a little bit different than in the US. Niamh is just one since last week and I noticed her curve when she was about 7 months.
N

sins
27th September 2004, 02:30 PM
It's great to have news like that.I've no doubt you're in a very safe pair of hands with your consultant.He's the most experienced in dealing with pediatric scoliosis and I remember him well from 21 years ago.......... :-D The fact that the scoliosis is resolving on it's own is super and you have the added security that the casting is available should it be required.I'm sure you're breathing a huge sigh of relief and we're delighted for you and Niamh.
Sins

christinehrph
18th January 2005, 06:13 AM
I can't belive no posts since September??? :cry:

newgirl
18th January 2005, 01:47 PM
Christine,
There have been a number of posts on the general discussion board relating to infantile scoliosis. I don't get to check in that often, but just to update you all.
Niamh was seen in scoliosis clinic in early Dec and the consultant was not as enthusiastic about her improvement this visit at all. Her curve has not progressed which was good news but her ribs are growing asymetrically which he is not too happy about. She had just started to walk well at that stage so he wanted to give her the benefit of the doubt for another couple of months to see if walking would strengthen her back muscles sufficiently to start straightening her spine. However I have to say i am not too optimistic, as it does not seem to have improved since and all she does all day long is walk and run around!
She did fall over during Christmas and they thought she had fractured her leg, but thankfully no fracture has appeared on x-ray and she is walking well again.
We are due to go back to clinic in March, and we should know for sure then whether she will be casted or not.
N