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Sealy
21st May 2005, 11:56 PM
Guess what ?

I've been doing a lot of thinking lately and the next time Deirdre gets her cast sawed off and a stand-up x-ray after a 24 hour interval is taken, if her curve is stable at 10 - 15 degrees and everything else looks good i.e., RVAD and Vertebral Rotation etc. etc.... then the plan is to go directly into a Spinecor brace ( NO mold required so therefore NO ANESTHESIA :monkey: :D ) I've already left a message with the secretary to see what Dr. H thinks about such a scenario. I've been reading up on the Spinecor brace and if you look at their website they have some pretty remarkable case studies. The scientific studies are also quite impressive. I read the following about conventional "rigid braces" which kind of worries me:

Rigid orthoses such as the Milwaukee, Boston, Atlantic Rim, Charleston and Providence, Wilmington, and Rosenberger have been the accepted protocols for idiopathic scoliosis over the years. Orthotic intervention with these orthoses begins at 20 curves and ends at the skeletal maturity of the spine or if the curve progresses to being a surgical candidate.10 Rowe and colleagues11 found that a 23-hour regimen is more successful than the 8-and 16-hour protocols. Although correction is usually obtained while in the orthosis, statistically the majority of patients regress back to their original curve magnitude after weaning from the orthosis at skeletal maturity.9,12 Carr and colleagues12 proved that patients progressed back to their original degree value in a long-term study of patients who were thought to be corrected permanently by the Milwaukee orthosis. Each of these orthoses relies on intra-abdominal pressure to decrease the axillary load on the spinal column, thereby causing the abdominal muscles to atrophy. Bunnel et al.10 suggested doing pelvic-tilt and sit-up exercises to avoid this paraspinal and abdominal atrophy from the total contact orthoses. Watts et al.13 also recognized the importance of an exercise program out of brace to maintain muscle tone. Lam and Mehdian14 have reported the importance of spine stability coming from the ability of the abdominal muscles to maintain intra-abdominal pressure. They proposed by looking at prune-belly syndrome (absence of abdominal musculature) that hypokyphosis results from the inability of the spine to remain stable and hyperactivity of lumbar musculature as a result of this lack of intra-abdominal pressure. It leads one to ask the question if intra-abdominal pressure is necessary in the treatment of adolescent idiopathic scoliosis, and further does it actually increase the instability of the spine further? Ferrari and colleagues15 studied the effect that rigid orthoses had on adolescent idiopathic scoliosis patients in exercise and found that due to its constriction of the thorax, the rigid orthoses did decrease pulmonary volumes and respiratory effort as well as the total lung capacity.



Anyway.... what do you all think ?




Sealy

Amazed Jean
22nd May 2005, 01:43 AM
Spinecor does make a good system and it looks like they can back up their claims. Eliminating any constriction of the thorax sounds logical for protection of the lung function. Anything to maintain lung function. I'm here to tell you anything to aid lung function is a lot more important in the long run than worrying about pain or cosmetics. I'd gladly take more pain and even a worse looking spine if they could guarantee say even 10% added lung function. AND in the short term, avoiding anesthectics anytime is worth doing! Sealy you are an amazing Mom. Any kid would be lucky to have you in their corner.

Sealy
22nd May 2005, 02:02 AM
Thanks Jean !

You always say the nicest things. I'm not doing much tonight, just surfing the internet looking up articles on SpineCor. The Milwaukee is such a scary looking brace and I think it would be a bit overkill to put her in one of those things if her curve is so small. I don't want to torture my poor daughter. Her casts have ALWAYS been very loose and I don't believe that there has been muscle atrophy. Anyway, we'll see if Dr. H agrees and if so, we'll do a test run for three months. Some children who have been treated with the SpineCor brace have had incredible results in a VERY short time frame. If it doesn't work, we could always go with the Milwaukee or else go back to casting. I read somewhere that the SpineCor costs around $5,000 :-o



Sealy

Jonny
22nd May 2005, 02:10 AM
To add my two penneth - with minor curves that are unlikely to progress to a point where they make any impact on lung function, I don't think it matters if you use a constricting brace or not, as long as it's effective at holding the curve. They're not pleasant (especially if you want to play a wind instrument) but it's worth it if it's the only way to ensure good control of the curve. I had a rigid brace with a curve that was on the limit (53 degrees) in skeletal immaturity, but my case was different (the brace was only intended to hold the curve until it was fused).

I certainly can't imagine respiratory muscle atrophy being an issue in an otherwise healthy patient with adequate lung capacity unless the brace is worn very long-term.

Although correction is usually obtained while in the orthosis, statistically the majority of patients regress back to their original curve magnitude after weaning from the orthosis at skeletal maturity. Carr and colleagues proved that patients progressed back to their original degree value in a long-term study of patients who were thought to be corrected permanently by the Milwaukee orthosis.All curves are bound to relax a little when the brace is removed, but if holding the curve straighter has reduced the ultimate magnitude of the curve (very likely), it has been a success. If a 35 degree curve becomes 20 in a brace at age 10, stays at 20 degrees in brace and goes back to 35 when brace treatment is discontinued at age 16, the bracing was successful and held the curve.

I don't think they'd even consider using anything as aggressive as a Milwaukee on Deirdre and her curve :-)

sins
22nd May 2005, 12:33 PM
I agree with Jonny,
the very thought of using a milwaulkee for Deirdre would be ridiculous.The good thing is that her curve is so mild, I feel you have more options open to you.By all means discuss with your doctor about the spine cor brace.I think at this point the most sensible thing to do is to choose the kindest treatment available, while maintaining her correction.I also think the risk of anesthesia for a child with a 10-15 degree curve far outweighs the benefit of the casting process.
I hope you can settle on a more suitable method of treatment for her.It's wonderful though to see how well the casting has worked and I'm absolutely delighted to see such a heartening success story.
Sins

Sealy
22nd May 2005, 03:35 PM
Sins,

I don't feel like we're a success, we have so many more years to go. The prognosis for juvenile scoliosis is not good one - it's quite aggressive if I remember correctly. However.... I can't see how it can be so aggressive if there is very little growth between the ages of six and nine years - so where does the "aggressiveness" come into play ?




Sealy

Sealy
22nd May 2005, 03:46 PM
Jonny,

Very good point ! You should copy that reply to the NSF forum topic "Do I need a brace ?" :-D

A milwaukee does seem a bit ridiculous. I can't see her wearing something like that full time. Anyway, we'll see what the boss says.


Sealy

tonibunny
22nd May 2005, 07:45 PM
I'm not sure if this helps much, but Infantile and Juvenile curves are usually a lot more rigid and difficult to straighten out than curves that develop quickly during the growth spurts of adolescence. I guess part of the "aggressiveness" could be down to that. You've been really lucky to get such a good correction with Deirdre in her casts! My curve was only ever "held" in place as it was always very inflexible - the best degree of correction I ever got within a cast or brace was of about 5 degrees.

Milkwaukees are great for high thoracic curves but I am absolutely sure Dierdre's case would never be considered suitable for one.

Sealy
23rd May 2005, 03:06 PM
Toni,

You're probably right regarding the rigid nature or the tendency to become rigid over time with infantile or juvenile scoliosis. You've done really well, I consider your treatment a TOTAL success.

Which brings me to my dear sweet hubby, who normally remains silent when it comes to Deirdre's scoliosis treatment. Last night he angrily stated that if Deirdre gets a Milwaukee brace that she will NOT be wearing it for 23 hours per day for fear that her abdominal muscles will atrophy. This is another strike against the Milwaukee for me... there is no way I'm going to allow her to go without support for 12 hours per day as he suggests. So.... the SpineCor is looking more and more attractive to me by the day. I'm getting kind of stressed with this whole thing right now. :shock:



Sealy

tonibunny
23rd May 2005, 03:30 PM
For everything I have read, and my own experience, if a child needs a Milwaukee, the benefits of it keeping her spine straight would far outweigh the possibilty that her abdominal muscles might atrophy. If a doctor prescribes a Milwaukee to be worn for 23 hours a day then really that should be adhered to, as it has been proven that noncompliance has a dramatic effect on the success of Milwaukee brace treatment. But, as I said, Deirdre is highly unlikely to be given one....so please try not to worry! :D

Surely it'd would be better to have a straighter spine and weaker stomach muscles (which can be strengthened by exercise following bracing) than a curvier spine with stronger abs? :D

Sealy
2nd June 2005, 09:20 PM
It looks as though the Milwaukee brace is the brace of choice. I've spoken to a few orthotists and it appears that the Milwaukee is best given Deirdre's age and circumstances. The studies that have been conducted on the SpineCor have been on adolescent children NOT on juvenile curves - Deirdre would basically be a guinea pig for this brace. Curves in children as young as Deirdre can quickly become severely deforming and it's best to keep the curve at a low level. If her curve can be maintained at around 10 degrees in the brace, then the prognosis is very good. I'm sure attempts will be made to wean her from the brace to see if the curve holds, if not then she will have to wear the brace until she finishes growing. Well, it's not so bad huh ?




Sealy

tonibunny
2nd June 2005, 09:47 PM
I was in the medical library at Stanmore today, and started making notes on Infantile Scoliosis - I am planning on getting a great deal of information from there and making it available here on SSO, so I will keep an eye out for alternative bracing treatments :-)

Do you know where the apex of Deirdre's curve is? According to "A Textbook of Paediatric Orthopaedics" (WB Saunders Co Ltd, 1997), Milwaukees should be used if the apex of the curve is higher than T8. At T8 or lower, a Boston is to be preferred.

Sealy
2nd June 2005, 10:50 PM
Toni,

Deirdre's apex is T8 and T9. The orthotist was explaining to me that with children so young, they prefer the Milwaukee since it doesn't compress the rib cage. The Milwaukee is a very "open" brace and allows movement of most of the vertebrae. If she still needs bracing when she's older we can try a TLSO. Another thing, because her curve is not high thoracic we can go with a low profile Milwaukee without the neck ring and it will be just as effective. I'm praying for curve stability and that she will only have to wear this dreaded thing for six months to a year. Am I dreaming ?? :hunny:



Sealy

Jonny
2nd June 2005, 10:55 PM
The Milwaukee is aggressive by nature, so it does surprise me a little, but I see and agree with their reasoning - it's likely to be more comfortable than a TLSO. Does it count as a Milwaukee without a neck ring? :-D

With something like a Milwaukee that's bound to put good corrective forces on the curve, it could well be as little time as that! But don't raise your hopes - it depends on how quick Deirdre's curve's response is, and how cautious her consultant is going to be.

tonibunny
2nd June 2005, 11:06 PM
Hi Sealy,

I was hoping to reassure you that the Milwaukee doesn't really constrict the ribcage, so I am glad that you have already heard this from her orthotist! :D The low-profile Milwaukee sounds great; in my opinion the worst thing about wearing a Milwaukee is the neck-ring (I wore one throughout my childhood, in the summers when it was too hot to have a bodycast).

I'm not sure how long Deirdre would have to continue to wear a brace; I would have thought that as long as she is growing, there would be the possibility of the curve progressing, BUT her curve is now so small that it's within the range where some doctors would be happy to just observe her. Maybe if her curve remains stable in the brace then they'll see how she gets on without it. Let's hope so! :-)

newgirl
3rd June 2005, 04:58 AM
Sealy,
Sorry to hear the spinecor is not an option, it looks quite interesting, but I did wonder about trying to get a wriggly child into it in the same position every day!!
Best of luck with the new brace, I am sure it will take Deirdre a little while to adjust to it but hopefully the curve will remain stable and she won't have to wear it for a long time.
Nicola