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Sealy
22nd September 2005, 07:46 PM
Hey gang,

O.K. I'm sure you're all dying to hear about Dr. Alman's looks...I
was VERY disappointed :soapbox: The picture on the website must be about
10 to 15 years old. Dr. Hedden is much better looking and he also
has a certain "je ne sais quoi" which Dr. Alman does not - he is also
very short and I guess I like my men tall. :D

Now to the nitty gritty...Dr. Alman feels casting is NO GOOD !!!!! I
am actually doing more harm by having Deirdre in casts! The ribs
underneath the armpits are being pushed in - although this is not
true since the cast is very loose - he didn't even bother to look at
her cast ! He said girls in general don't like to have a small rib
cage. I then said... "well what about the ravages of scoliosis ?
Scoliosis isn't attractive ?!" He ignored this comment and said he
wanted to saw the cast off right away and fit her with a TLSO. When I
mentioned that TLSO's cause rib cage compression in young children,
he looked a little peeved - how dare I question his authority ?!

He refused to take a stand-up x-ray after a 24 hour period to see
what the measurements look like. When I asked about the RVAD, he
said RVAD's are meaningless and there is no point trying to track the
number! All the articles written to date on scoliosis are
useless....even the study conducted at Sick Kids by Tolo and
Gillespie is B.S. Sooooo...... I think it's going to be Dr. Rivard
in Montreal. I think Dr. Rivard is a brilliant doctor, it's just the commute :woe:




Sealy

tonibunny
22nd September 2005, 08:18 PM
Oooooooooooh I am SO angry at this guy's comments!!! A plaster cast would no more "push the ribs in" than a corset-style brace would!!! And what's the point in letting a ribcage grow freely if it's going to grow deformed as it does so???

Show the guy my photos. I had plenty of bodycasts and after 2 costoplasties, I have a small but very nice ribcage thank you very much (I take a 32" bra). Ask him how he can say casting is no good when strict use of casts and braces managed to hold my thoracic curve in the 60s for almost ten years!!!

HOW on earth can he say RVADs are meaningless? I'd love to get him to say that in front of Min Mehta. She may be tiny but you just know she could really savage someone like that :evil: IDIOT, there's years of the evidence about the RVAD being a good indicator of the likelihood of curve progression - thanks for making those Mehta articles available on the web Sealy, they are fascinating.

I'm so glad that you are a such a clued-up assertive mother Sealy - and you can tell that this guy is talking rubbish!!! It's scary to think that a less knowledgeable, meeker mother might go along with this shmuck and do her child long term damage.

GOOD LUCK with Dr Rivard!!!

Sealy
22nd September 2005, 08:29 PM
Toni,

He's an American doctor and from what I understand a lot of moms in the U.S. are having a heck of a time convincing these guys of the benefits of casting. I'm not even going to try ! It's pointless ! I'm going straight to Dr. Rivard....he said that if the Spinecor doesn't work for Deirdre, he'll put her back into a cast.

tonibunny
22nd September 2005, 08:37 PM
It's unbelievable that these US doctors refuse to look at the years worth of evidence from places like the UK. Casting has been tried and tested for at least 30 years!!! Damn, it makes me angry.

My mother said that she was really shocked when she went to the States and kept seeing teenagers with noticeable untreated scoliosis. That just doesn't happen here anymore, ever.

Fingers crossed for the Spinecor! :squeeze:

Sealy
22nd September 2005, 09:23 PM
Thanks Toni ! I really hope it works too. Thanks so much for the support :squeeze:

titch
22nd September 2005, 09:41 PM
It sounds like you are on the right track - over the years what I have read and heard of treatment in the US has worried me deeply. I seem to have read of far too many cases where they refuse to cast (because apparently it's barbaric) and refuse to brace (because apparently it won't help), and wait and wait and eventually, all of a sudden, gee - that curve has gone up a lot, guess we'd better go in with the growth rods. At which point they're looking at a 2 or 3 year old with a 90+ curvature that if they're lucky they can get down to 50 or 60. Terribly frustrating, and terrible for the poor children.

Dr Rivard sounds like the guy to go to :-) He seems open to trying things and basing it on results, which is always a good thing. Deirdre is lucky to have such a pro-active mother :D

newgirl
22nd September 2005, 10:46 PM
:shock: :shock: :shock:
I cannot believe that attitude Sealy, surely in this day and age active participation in a childs treatment by a parent should be welcomed not treated by derision.
We had to attend a paediatrician when we were in the states with Niamh due to a very bad tummy bug and she expressed great surprise that Niamh was in a brace. She basically said that if she were in the US she would be left untreated, her eyebrowss nearly hit the ceiling when I told her she was going into a plaster cast on our return to Ireland.
On the RVAD, Dr. Mc Manus certainly led us to believe that it was a very good indicator of the liklihood of progression, he measured Niamh's early on during the wait and see period and was pleased to see that it had improved slightly.
Sealy, go with Dr. Rivard, he sounds like he has a definite plan of action for Deirdre, the commute is a pain but it is all a means to an end.
As an aside, haven't posted in a while, Niamh was supposed to be casted last Thurs, but it was cancelled by the hospital on Wed, the consultant was not going to be there, supposed to be today but postponed till next Thursday :-(
Nicola

sins
22nd September 2005, 10:58 PM
Sealy, the commuting is worth it.
What a pointless and annoying consultation you've just endured. I guess there's a number of approaches to treating scoliosis, my feeling is I'd rather do something as opposed to nothing.
Sins

Sealy
22nd September 2005, 11:19 PM
The feeling I got from the appointment was that he wanted her braced and let's hope for the best.....if she progresses, casting is not an option so obviously surgery :???: At least Dr Rivard said that he would be willing to cast her if the SpineCor didn't work. It worries me that he's totally disregarding studies conducted to date, who does he think he is ? I phoned Montreal and I'm trying to get Deirdre in ASAP. In cases like this, the commute is so worth it.


Nicola, I hope everything goes well next week :squeeze:

gerbo
23rd September 2005, 09:37 AM
Damn, you must feel gutted! Really feel sad and upset for you.

Fortunately for your daughter you are not a "yes doctor, no doctor, will do anything your highness suggests in your eternal wisdom and can I please kiss your feet whilst I am bowing my head in admiration" type of mum.

You'll get where you want to be!

gerbo

:squeeze:

gerbo
23rd September 2005, 10:54 AM
However, however

Wasn't it the plan regardless that the serial casting is going to finish now anyway? And weren't you going to leave her out of any brace to establish how stable you are currently?? Isn't that what dr rivard suggested as well??

So, isn't it easier to stick to this Tom Cruise lengthalike-but-not-lookalike for this purpose, and for the required monitoring before you make this big switchover with all the practical problems that entails??

Alternatively, would there not be anybody else more locally you could use in first instance?

I know you'll make the right decision for you and deidre eventually, just wanted to point out some alternative lines of thought.

With best wishes

gerbo

Sealy
23rd September 2005, 02:52 PM
Gerbo,

Your comments always make me smile :-D I like the "Tom Cruise length alike but not look a like one" :rofl: True, the plan was to put her in a rigid brace. There were a few things that made me "feel" very uncomfortable:

1) Not once did he look at Deirdre and refused to look at her cast.

2) He stated that he would not be tracking key numbers like RVAD, rotation and so forth - according to numerous studies, these numbers are very important

3) The plan was to saw off the current cast and get a mold for the brace and tape the current cast back together while we wait for the brace - we know from Nicola how successful this is !

4) The follow up appointment is scheduled in six months time, this seems like a very long time considering that this is a major transition for Deirdre

5) He's very anti casting, he doesn't believe in it.

6) Total disregard for orthopaedic surgeons before him who dedicated years of their lives to research !

There was one major plus in his favour, he doesn't like x-rays ! I think if we stayed with him, Deirdre wouldn't be exposed to too many.

I know this is a major decision, but I feel I need to take a stand and not be wishy washy. I have a feeling Dr. Alman's specialty is club foot and not scoliosis - there were a lot of children/infants in the waiting room area with club foot issues.




Sealy

gerbo
23rd September 2005, 03:54 PM
I can so understand your feelings towards this doctor, so many of them just do not like thinking (or talking) patients, it just complicates matters and prolongs the consultation (and they will not want to miss their 5 o'clock golf appointment)

I just thought that you were considering having Deidre out of support for a while, to see whether she still needs it. wasn't she quite straight on the last x ray?? Wasn't that what dr rivard suggested as well?? Would mr Nottomcruise have done that as well, or was he planning to have her in a permanent hard brace straight after the cast?

I suppose if you would keep her without cast/ brace you would not want to have to wait 6 months for a check up, and i suppose you feel generally so BLEEPED-off with him that you just do not want to see him again

Till what age have children been casted?

gerbo

Sealy
23rd September 2005, 05:39 PM
Originally posted by gerbo@Sep 23 2005, 07:54 AM
I just thought that you were considering having Deidre out of support for a while, to see whether she still needs it. wasn't she quite straight on the last x ray?? Wasn't that what dr rivard suggested as well?? Would mr Nottomcruise have done that as well, or was he planning to have her in a permanent hard brace straight after the cast?

I suppose if you would keep her without cast/ brace you would not want to have to wait 6 months for a check up, and i suppose you feel generally so BLEEPED-off with him that you just do not want to see him again

Till what age have children been casted?

gerbo


Yes, she was very straight in the last x-ray BUT... that's in the cast :-o Dr. Rivard did suggest no support for two to three months, but before I left he said he wanted to see Deirdre back to fit her with the SpineCor brace. He knows I feel uncomfortable with no support.

Oh.... I did mention the Spinecor to Dr. Alman and he said that they were running trial studies on it and it appears that the reason they dropped it was because the previous company was over billing the hospital :???: He also said that the Spinecor is not much better than other braces - I took this as a positive thing.

As far as I know children will be casted based on necessity for curve control etc... In terms of serial casting for young children, I don't think it's done beyond the age of 6 ?! I've been translating an article by Cotrel and Morel and it looks like EDF casting can be done up until the time of spinal fusion for some children - I don't know how the parents or children would feel about this, longterm casting does take it's toll :woe:



Sealy

tonibunny
23rd September 2005, 06:42 PM
I don't think there's an age limit for when casting should be stopped - I was in casts until I had my first fusion at ten, and I also had a post-op cast after that too. I wore the casts interchangeably with Milwaukee braces, usually with the winter months in a cast and the summer months in a brace.

I think maybe the casting is harder on the parents Sealy - console yourself with that thought if you ever feel bad for Dierdre! I was used to my casts and was quite comfy in them.

I was interested to note from Mehta's writings, that she was pioneering serial *corrective* casts as far back as 1978, when I would have been three! I know that she sometimes came round to look at me even though I was Mr Edgar's patient, but she seemed to treat very few children personally compared to Mr Edgar, Mr Webb and Mr Morley, which is a big shame.

Sealy
24th September 2005, 03:19 PM
Toni,

Your comment made me wonder whether things would have turned out differently for you had you been treated by Miss Mehta. I know she wasn't able to cure all her children....but I wonder.

tonibunny
24th September 2005, 07:55 PM
As I was first diagnosed in 1976, I was perhaps a little early for her. My hospital notes show that my curve was very inflexible from an early age, as it didn't get noticeably smaller even in a brace or cast - it just stayed where it was. Thankfully though, it didn't get much bigger either, not until it suddenly derioated when I was 10!!! But I do wonder, because she reckons that a very young baby's bones are soft, whether Min could have managed to correct my curve if she'd got to me when I was first diagnosed at 6 months old.

I'm certainly not feeling like I missed out though - I'd never want anyone to think that I feel like that. Mr Edgar did the most amazing job on me, as you can all see! I feel very, very lucky and grateful for having had such brilliant treatment.

I may have mentioned this before, but in her writings Mehta mentions something about face shape being connected to scoliosis, and I distinctly remember her coming to see me with her entourage of student doctors, and peering closely into my face. I was a polite child so I smiled back at her, and when she told me to stop smiling my face just dropped like a stone!

Sealy
24th September 2005, 11:32 PM
Originally posted by tonibunny@Sep 24 2005, 11:55 AM
...I distinctly remember her coming to see me with her entourage of student doctors, and peering closely into my face. I was a polite child so I smiled back at her, and when she told me to stop smiling my face just dropped like a stone!
Toni,

I got goose bumps reading this ! Gosh, she peered into your face way back then - I imagine her looking into your eyes and saying: "yes, come with me...I"ll save you" Something along the lines of a novel I guess, maybe time travel. Things like this always make me catch my breath because I realize how random events can be and how little control we have over them.

tonibunny
24th September 2005, 11:41 PM
I think she was with Mr Edgar at the time, they were friends and colleagues. She wasn't really looking into my eyes either, just checking my face out to see if it was an odd shape :lol: We used to see her about, she was known by me and my mother as "the little Indian lady doctor", which sounds a bit patronising when I think of her now more in terms of "that amazingly clever goddess who devoted her life to children with scoliosis and changed hundreds of lives for the better" (and that's an understatement) :D

Sealy
25th September 2005, 12:36 AM
I guess my imagination is running wild tonight :-D It occurred to me recently that the spinecor brace is very similar to the canvas straps and methods used in the Cotrel EDF frame in order to achieve derotation, elongation and lateral bending.

tonibunny
25th September 2005, 02:10 AM
Ahh, the Cotrel casting frame, that brings back memories! It was very strange seeing the one at Stanmore again, knowing that Erin gets cast on the very same frame that I used to be cast on. I saw it a couple of months back when I went to Stanmore to look at Jonny's medical notes with him; the last time I'd seen it was 19 years ago, and the head of the plaster theatre told me that it was the same one they'd had since the 1960s.

I was just gonna ask what EDF was, but now I can see that it means Elongation, Deformation and Flexion :D

Sealy
25th September 2005, 09:28 AM
Ha Ha deformation, that's a good one ! :-D Dr. Cotrel is a giant in the orthopaedic world. Miss Metha's casts are IDENTICAL to the casts Dr. Cotrel was using. In the article I'm reading he stresses the importance of using growth as a corrective force in the treatment of infantile and juvenile scoliosis - the article was written in 1968. The spinecor brace looks very similar to the straps in the Cotrel frame ( same type of corrective action ) that Dr. Rivard has come up with. In terms of influence, Dr. Cotrel is a genius.

tonibunny
25th September 2005, 11:48 AM
Originally posted by Sealy@Sep 25 2005, 07:28 AM
Ha Ha deformation, that's a good one ! :-D
Oops, I looked it up on the web (see here) (http://www.iscoliosis.com/video.html?filename=cotrel-edf-cast) and that's what it said the D stood for - it was late when I wrote that and at the time it sounded right cos they basically "deform" the curve so it's straighter :oops:

Obviously "derotation" is a much better word! :hammer:

tonibunny
25th September 2005, 11:54 AM
Originally posted by Sealy@Sep 25 2005, 07:28 AM
Dr. Cotrel is a giant in the orthopaedic world. Miss Metha's casts are IDENTICAL to the casts Dr. Cotrel was using. In the article I'm reading he stresses the importance of using growth as a corrective force in the treatment of infantile and juvenile scoliosis - the article was written in 1968.
Ah, in that case then I did have casts that were intended to try to correct if possible - so I guess that in my case it wasn't possible. I had all the traction and derotation stuff applied when I had the casts put on. My hospital notes show that they knew by the time that I was 5 that I'd need surgery "at age 9 or 10" so I did very well to get to 10 and a half :D

Sealy
25th September 2005, 03:02 PM
Originally posted by tonibunny@Sep 25 2005, 03:48 AM
Oops, I looked it up on the web (see here) (http://www.iscoliosis.com/video.html?filename=cotrel-edf-cast) and that's what it said the D stood for - it was late when I wrote that and at the time it sounded right cos they basically "deform" the curve so it's straighter :oops:

Obviously "derotation" is a much better word! :hammer:
Ha !!!! :rofl: I thought you were just joking around :D

gerbo
26th September 2005, 09:26 AM
Originally posted by Sealy@Sep 24 2005, 10:36 PM
I guess my imagination is running wild tonight :-D It occurred to me recently that the spinecor brace is very similar to the canvas straps and methods used in the Cotrel EDF frame in order to achieve derotation, elongation and lateral bending.
what is an EDF frame? What does it look like?

gerbo

tonibunny
26th September 2005, 11:54 AM
I'll try to find you a photo Gerbo. The EDF frame is like a huge metal frame on which a patient is laid and put into Cotrel traction (neck halter/hip traction) and their legs are drawn straight up at an angle, out of the way. They lie on a thin strip of metal and some sort of straps are used to apply derotation forces, and then the plaster is applied. It's a bit difficult for me to describe what it looks like as I only ever saw the process from a first person viewpoint....but, I've seen photos of the technique on the web, so I'll hunt for them.

gerbo
26th September 2005, 12:14 PM
is it still being used? Only for casting or also for making braces.???

Reason i am asking this is that in "our" situation (bracing in adolescent scoliosis) it seems paramount (I know i am repeating myself) that optimum correction is achieved witht the brace, clearly the correction during fitting and therefore the method used to achieve this, must be of relevance.,

thanks

gerbo

BeckyH
26th September 2005, 12:36 PM
when i was cast for my brace i wasn't put in a frame or anything. i remember noticing in the plaster room that there was literally like a coathanger/baby's mobile hanging from the cieling which i assumed i'd have to hang onto to stretch me out, and i remember thinking "gawd my arms will drop off if i have to do that!" i may even have been sat down whilst i was cast...the orthotist certainly was...and i think i was sitting on a stool. i didn't have to be stretched in any way, and with a brace i think it may be less critical because the difference between a brace and a cast is a brace can be tightened manually by patient/helper whereas a cast is solid and can't be changed. i may be wrong but...feel free to correct me!

tonibunny
26th September 2005, 12:59 PM
I used to be cast for my braces on the EDF Frame in exactly the same way as for the casts - only they'd cut the cast off when they'd finished it, instead of leaving it on!

However after I had my first surgery, I had a protective cast applied whilst sitting down, and after my surgeries when I was 18 I was cast for my post-op brace whilst standing up.

tonibunny
26th September 2005, 01:00 PM
Gerbo, it's certainly still being used, because little Erin has her casts applied in exactly the same way as I had mine applied - and on the same EDF Frame at Stanmore, too!

Sealy
26th September 2005, 01:48 PM
Toni/Gerbo,

I'm planning to upload the translated article to the infantile/juvenile support group. I just tried copying some of the pictures onto here with no luck ! If I emailed them to you Toni, would you be able to post them ?

gerbo
26th September 2005, 03:50 PM
Originally posted by marmyte@Sep 26 2005, 10:36 AM
, and with a brace i think it may be less critical because the difference between a brace and a cast is a brace can be tightened manually by patient/helper whereas a cast is solid and can't be changed. i may be wrong but...feel free to correct me!


I wouldn't dare correcting you, ;-) however it does appear to me that even at it tightest the brace will push the spine at the most in the position it was put in during casting/ fitting of brace. With other words, the better correction during fitting, the better correction by wearing it thight, with other words, I think it is important, if not essential. Does that make sense??

gerbo

titch
26th September 2005, 03:59 PM
I see what you mean - with an off the shelf thing, like my post-op brace was, then of course the tighter you can do it up, the more it does press on things.

I could be completely wrong, but I would guess there is a problem with moulding a brace under extreme stretching and derotation. With a plaster cast, it hardens and then stays on for months at a time, so the correction gained is held in place right from the start. If you've got a flexible enough curve to achieve significant correction simply through traction though, and you cast a brace like that, perhaps it wouldn't be possible to get it on so that it fits without that traction? I think this is why braces generally rely on targetted compression and pressure points to have their effect. I could be way off mark though, this is just a bit of top of the head thought!

tonibunny
26th September 2005, 05:16 PM
I ought to point out Titch, that the braces I was cast for on the EDF frame were Milwaukee braces........I was never cast for a corset-style brace in that way. Milwaukees, as you will probably know, can apply traction via the neck-ring.

However! I have just been measured for a corset-style brace made of fabric, and the orthotist took the measurements with me in traction to pull out my lower vertebrae. The aim of this brace is to take the pressure off my two remaining lumbar discs, and I've been told to get someone to help me put it on whilst I stretch myself out as much as I can by hanging onto a door frame.... :D I'm going for the initial fitting for this brace tomorrow.

gerbo
26th September 2005, 05:40 PM
Clearly we are completely off the subject, sorry celia, at least you get us talking

"My" argument for maximum correction when fitting brace only applies for the method which is used for Laura, i.e. a plastic brace made from a plastercast taken from the body whilst being corrected (vertical traction in a guillotine type contraption). The resulting brace follows the bodyshape exactly "hand in glove style" Once it is fitted there is no method of giving additional correction.

The other method is the boston brace style (I think similarly the cheneau brace used on the continent) where additional correction is being achieved by adding pressure pads on the inside of the brace, which, if well applied should give additional correction. There also is space on the concave side of the curve for the body to expand into, making it more effective.

Our consultants do not like the latter type, as it isn't as comfortable, and possibly more visible, so less acceptable to wearer.

My biggest worry remains (recurring theme, you might notice) that the pay-off for more comfort is reduced (or no) effectiveness.

If casting works so well in infantile scoliosis, i can see (at least) three reasons

1) an effort is made to achieve maximum correction before applying the cast
2) this correction is the maintained as the wearer has no choice to keep to on but for 24/7, always keeping the perfect fit. Clealy with removable braces there is always the variability in taking it off a bit longer then you are supposed to, or to loosen the straps a bit when you get sweaty, thereby reducing efficiency
3) Frequent reviews, trying to achieve progressive reductions as you go along, rather than; see you in 8 months to see how you get on.

I wonder if the same principles could/would be applied in adolescent bracing, would endresults be much better?? :soapbox: :soapbox:

gerbo

BeckyH
26th September 2005, 05:50 PM
i was in a boston brace, with the padding to put pressure on certain parts, and i think they were very well placed (duh, should've made that clear in my first post, sorry!) my memory isn't perfect, but i think my spine rotated more once i ditched the brace (i had rotation so that a few vertebrae were sticking out on the right hand side, above where my fusion now is, must have been around my thoracic curve - does that make sense?) i was also seen every 6 months whilst being braced and my growing had slowed a lot by then.

again, i'm not an expert but the way i see and understand the whole bracing issue, the further you are into adolescence at the point of diagnosis, the lesser the corrective effect of a brace. with hindsight, the best i could ever have hoped for (holding curves whilst i still grew and agreed to consent to surgery) was achieved. it's praticularly imperative in girls that you get an early diagnosis, as we stop growing sooner (so you're doing everything you can with Laura) i just think there's a certain point where a curve becomes to big or a child too "mature" to be braced to achieve permenant correction (and i'm not implying that anyone here is close to that, this is my view) if you start from the outset of a curve, you have much more chance of keeping it very small and if i was diagnosed earlier, i may have been like Laura, who knows? maybe i'm just more convinced on the surgical angle...it's probably that parent/patient difference in opinion coming through :D i hope i haven't frightened or put anyone off

gerbo
26th September 2005, 06:09 PM
agree, need to start early, brace properly, and you might have a chance

saying that, there is something to be said for blissfully not knowing, being spared lots of anxiety (partially caused and exacerbated by parents) and then having succesful surgery (like you seem to have had)

mmmh, might be underestimating what you will have had to go through, suppose i am just saying i quite understand why you are not unhappy with where you got eventually

gerbo

Sealy
26th September 2005, 09:08 PM
Gerbo,

Did you get the pictures ? Just checking...

gerbo
28th September 2005, 12:09 PM
seen the pictures, do you know whether this is used anywhere for bracing in adolescents? Might just give stanmore a ring at some stage i suppose, and ask the orthotist there

gerbo

Sealy
28th September 2005, 03:34 PM
Gerbo,

I thought the Cotrel frame was pretty common in hospitals :???: Was your daughter's brace an "off the shelf" variety ?

gerbo
28th September 2005, 05:52 PM
no, hers was made after a plastercast, which she had applied whilst sitting within a frame, with a collar round her neck applying vertical traction and any further correction (?) applied through the orthotists hands whilst the plaster was setting. (see my message about 6 steps back)

so what i need to work out now is whether this cotrel frame 1) can be used on teenagers and 2) has inherent advantages/ superior results

:help: :help: :help: :help:

Sealy
28th September 2005, 06:51 PM
Gerbo,

When is your next appointment with the ortho ? It appears they did apply "some" kind of traction already, whether it's sufficient is another matter - it doesn't appear so since they only got a 9 degree correction ? Is it possible to get a second opinion if you're not completely happy with the current ortho, perhaps at a hospital that routinely uses the cotrel frame ?

As an aside, do you think the spinecor is very similar to the cotrel frame - or am I out to lunch ? :-D