spinecor

[Pooka1]

Well the species is endangered and they claim they will be put back together. I just hope they are given an egg/chick to raise for their trouble/stress from being torn apart. The gay penguin couple at the Central Park Zoo were given an egg/chick to raise and that worked out great. Someone even wrote a children's book abut it... "And Tango Makes Three."

[TAMZTOM]

Love the name Tamzin! And my own daughter who is now 17 loves the name too and said that someday if she ever had a girl she might call her that.

I've just told Tamzin (who likes the middle name "Legend") that her name may span generations. Please thank your daughter that she made Tamzin beam a smile.

Your brain is working overtime I can tell. I recall one year ago this month when I joined this forum and my brain felt like it was going to explode with all the information and decisions and then I'd change my mind and feel like a pendulum.

Thanks for the forewarning re. the pendulumitus.

I wonder if you shouldn't start your very own 'Tamzin' thread where you could post all the details of your experiences with your daughter's scoliosis.

I may just give that a try. Thanks for the tip.

[TAMZTOM]

Stupidity at its finest as usual. All my seven chinchillas are male and I have two pair who live together, interact, and cuddle and groom each other and they bicker too. They are very happy. I won't bring a female chinchilla here b/c that could cause a problem with my pairs, they could start a fight with each other when she has her cycle. All boys here!! Rick Mercer needs to do a show on these people, if he already hasn't.

Elisa
Rushing out to get the kids to school (we're on top of a mountain in the middle of nowhere in south Wales, so it's literally a trek). I grabbed a quick glance at your BLOG. Great to see your son looking top notch, happy and healthy.
Tom

[TAMZTOM]

Celia, yes, I was pretty confused to hear that the orthopaedist believed her top thoracic curve, 34degrees, to look congenital yet not believing it resulted in the other two curves. He tried to explain the way the way resulting curves usually form from a congenital curve and apparently alyssa's didnt so bracing should be effective? I guess there's no harm in trying. She was also found to have an abnormailty with her brain stem upon her xrays from the 1st orthopaedist and has had an mri done, she will be having another done next week to make sure there isn't an underlying cause that should be addressed. Apparently it sits lower than it should but the neurosurgeon said that is actually pretty common and not a concern but 2nd mri will confirm that. It's one thing to try to grasp the scoliosis thing but then to try and understand what else is going on with the whole neurology thing, I'm telling you, I just feel like I'm at a loss sometimes. I try to get online and research and understand the various aspects of everything but theres sooooooo much to try and learn, it's pretty extensive. I'm doing what I can and remain grateful and hopeful about everything.

Does anyone have any contact details for this poster? She sounds as if her daughter has/had the same Chiari 1 condition as my daughter.

[leahdragonfly]

Hi there,

Celia does not participate in this forum any longer, but I know there have been some posts from other parents whose children have Chiari or SM. If you do a search of the forum for Chiari or syrinx you should be able to find them.

Best of luck,

[TAMZTOM]

Hi there,

Celia does not participate in this forum any longer, but I know there have been some posts from other parents whose children have Chiari or SM. If you do a search of the forum for Chiari or syrinx you should be able to find them.

Best of luck,

Thanks a lot, will do the search now.
Cheers
Tom

[Elisa]

Tom, does Tamzin have a right or left curve?

[TAMZTOM]

Tom, does Tamzin have a right or left curve?

Hi Elisa. Thoracic is right, lumbar on left. Follows the idiopathic pattern although the Chiari and SM COULD HAVE changed the symptoms otherwise. No one will ever know when the Chiari and SM started.

[RugbyLaura]

Hi Tom,

Just wanted to say that I admire your attitude and wish Tamzin all the best with your chosen method/s of treatment - I truely hope you are successful.

Not wishing to put a downer on the Spinecor thread but... It didn't work for my daughter (Immi) either. She is now under the care of Mr Tucker at the RNOH, Stanmore. Due to have her surgery in early December.

I hope other posters come forward with their Spinecor success stories to keep you motivated.

Laura

[TAMZTOM]

Hi Tom,

Just wanted to say that I admire your attitude and wish Tamzin all the best with your chosen method/s of treatment - I truely hope you are successful.

Not wishing to put a downer on the Spinecor thread but... It didn't work for my daughter (Immi) either. She is now under the care of Mr Tucker at the RNOH, Stanmore. Due to have her surgery in early December.

I hope other posters come forward with their Spinecor success stories to keep you motivated.

Laura

Laura, many thanks for your reply. I'm really affected right now for you and your daughter--what a few years, looking positive as the curve dropped 14 degrees, then it progressing rapidly (during growth spurt I'm assuming). Tamzin and I wish your daughter all the best for her surgery.
I'm about to take the earlier advice from another poster (Elisa) by starting a new forum thread detailing everything we do with Tamzin (exercise, bracing, diet, mentality, research, etc.). It's possibly not appropriate to do this in an existing thread. I would benefit hugely from as much input as I get get from people such as yourself and anyone else with insight into the condition and experience, knowledge or intuition on correcting. Sometimes the best help is from people simply saying they know the emotions, the effort and strength it takes to go on. Moving on from mistakes, adapting, continuing with half-formed ideas on exercise while being totally consumed and overwhelmed mentally with new and different ideas.
Whooaaaaaaaaa....I was wish I had a more organised mind!
Thanks Laura, you've given me a push on a tired morning. I'll PM you today.
Tom

PS: we live on a farm in Wales (not a farmer though), the Brecon Beacons national park, up a mountain in the middle of nowhere. I'm Scottish, educated in England and the USA, been here for 5 years...who knows where I'll end up.

[TAMZTOM]

I've just resumed reading this thread---up to post #987 and counting. We are getting a SpineCor on Friday. Does anyone using this brace have experience with the following:

• Tamzin is right thoracic, left lumbar
• LEFT shoulder is SLIGHTLY higher than the right; my impression is that many kids with this curve pattern have a higher right shoulder
• My 'impression', again, is that many SpineCor patients' braces tilt the higher shoulder down
• If Tamzin's left shoulder is tilted down in the brace (I don't know that this would be the orthotist's suggestion--or indeed the software's 'suggestion' for that 'unusual' deviation from the normal fitting to RT & LL curves), that would possibly worsen the right thoracic curve, or have that tendency (e.g., the curve may be reduced, but not optimally if the left shoulder is tilted down, but this 'missed opportunity' will be disguised by the curve improvement).

Input appreciated...I'll be looking into SpineCor stuff for the next 5 days.

[jillw]

I haven't posted here in a while, so I thought I'd give a quick update (see my signature below). Things have been pretty good so far (knock wood!).

For those who haven't seen my posts in previous years, my daughter has been wearing spinecor for close to 4 1/2 years (starting at 7 years old and now almost 11 1/2 years old). Her curves have basically held over that time frame (with little flucuations - within the margin of error- during that time frame). In that time frame she has grown almost 11 inches.

At 11 years old, her adolescent growth spurt could start any time, although I suspect she will be a late bloomer. Obviously our biggest challenge still is ahead of us (i.e. once her peak velocity growth spurt starts), but I am thankful that she has made it to 11 years old with no real progression and a curve that would be considered relatively mild for a child that age.

I have always been concerned because her rotation has always been a high relative to the size of her curve... and it has increased a little recently. Given that, along with her age, I'm afraid it may mean that her curve is about to increase also, but I hope I am wrong. Time will tell!

[TAMZTOM]

For those who haven't seen my posts in previous years, my daughter has been wearing spinecor for close to 4 1/2 years (starting at 7 years old and now almost 11 1/2 years old). Her curves have basically held over that time frame (with little flucuations - within the margin of error- during that time frame). In that time frame she has grown almost 11 inches.

Jillw
Thanks for the update, great for me to see as my daughter has just started. We're convinced that we missed what you spotted, i.e., scoliosis at 7 yrs old. (In our case, Tamzin swam, ran, etc.--for technical analysis, we even used slow motion video from behind FOCUSING on her BACK and didn't see anything until last summer.) That is one whopping amount of growth in your daughter--well done for keeping her stable.

At 11 years old, her adolescent growth spurt could start any time, although I suspect she will be a late bloomer. Obviously our biggest challenge still is ahead of us (i.e. once her peak velocity growth spurt starts), but I am thankful that she has made it to 11 years old with no real progression and a curve that would be considered relatively mild for a child that age.

We are right behind you--Tamzin will turn 11 in April.

I have always been concerned because her rotation has always been a high relative to the size of her curve... and it has increased a little recently. Given that, along with her age, I'm afraid it may mean that her curve is about to increase also, but I hope I am wrong. Time will tell!

We haven't had--IMO--a proper in-brace x-ray yet. Tamzin is 6 weeks into wearing the brace. She was told to "relax" when having the first in-brace x-ray--Tamzin took this very literally and basically collapsed. With the shoulder compression from bands #3 & #4, I'm sure that Cobb angles were not indicative. We have our next x-ray in March, will post the results.
For the first 4 weeks, we're also pretty sure that the brace wasn't doing much at all. We washed the pelvic base twice a week, but didn't wash the bolero and bands--wary of messing it up. It was way too loose. We now wash it once a week and had the bands adjusted at the 4 week follow-up. We had band #1 tightened quite significantly: although the primary function of band #1, in our case (RT3 classification), is thoracic derotation while stabilizing the LC, the secondary function is to apply some lateral force on the TC. This is neutralised as band#1 wraps around the front, then round the back and attached there. Nevertheless, we believe this is applying lateral corrective force on both curves. We had #3 and #4 loosened relatively to reduce the compression but still achieve thoracic derotation. Tamzin's posterior left ribs are visibly derotated, best I've seen them in 6 months since diagnosis.
At this stage, we are focusing on derotation; lateral correction, IMO, can better take place on a derotated spine. We believe that SOME lateral correction happens almost naturally as the kid is 'unscrewed', like a corkscrew.

Does your daughter also engage in exercise specifically for her scoliosis?

[jillw]

[QUOTE=TAMZTOM;134147]
We're convinced that we missed what you spotted, i.e., scoliosis at 7 yrs old. (In our case, Tamzin swam, ran, etc.--for technical analysis, we even used slow motion video from behind FOCUSING on her BACK and didn't see anything until last summer.)

[QUOTE]

I think that they caught my daughter's curve early because of the rotation, the pediatrician found it during a checkup when she did the adams bending test. I felt like we could take a chance with spinecor because her curve was right on the cusp of bracing (we were told by various orthos that they generally brace with 20 degree curves for JIS instead of waiting for 25 degrees like AIS). If it hadn't worked we would have considered the alternatives, but have been fortunate so far

good luck to your daughter! It makes sense that the brace was loose. The doctors in Montreal told us it has to be washed at least once a week to keep it fitting properly. My daughter has been wearing the same brace for 4 years (with one of the bands replaced and the crotch snaps replaced over the years) . When we go back next time she will get an entirely new brace.

We don't do a formal exercise routine for the scoliosis other than occasional pilates classes. She does it one on one with an instructor, but the truth is, we don't do it frequently enough for it to make a big difference. Having said that, when doing those classes she does get feedback on her body positioning and a reminder that what feels straight to her isn't straight. I figured it couldn't hurt - everyone can benefit from a stronger core, right?

She is very busy with other physical activities; especially dance, but again not specific to scoliosis.

[TAMZTOM]

The doctors in Montreal told us it has to be washed at least once a week to keep it fitting properly.

Yep, we're on the ball now, thanks. Tamzin feels "snug" wearing it after washing, protected almost! Double-edged sword that one as it's crucial that she works with the brace.

We don't do a formal exercise routine for the scoliosis other than occasional pilates classes.

We've just signed up for private Pilates classes with a local instructor: watched her in action twice already, very impressed. She knows a heck of a lot more than me on very specific core strength and flexibility stuff, her precise technical knowledge very helpful. I'll learn a lot watching her work with Tamzin.

She is very busy with other physical activities; especially dance, but again not specific to scoliosis.

Dance (ballet), so we're discovering rapidly, can be very beneficial. Our orthotist, head of SpineCor UK, has many budding ballerinas on his treatment list and has quite a few success stories from their ranks. I'm actually beginning to wonder whether simply doing any exercise, especially the likes of ballet, is sufficient to achieve as much correction as many of the more specific methods. With Tamzin, however, we spent 6 weeks or so instilling into her that her scoliosis specific auto-self-correction 'manoeuvres' were required before we'd let her loose at formal classes. Doing something she loves while correcting at the same time.

Tamzin has some strange ability to pack on muscle very quickly; her legs are bulking up almost by the week, posture assured, etc. She just started formal ballet lessons last week after some basics with me for 6 weeks. According to the instructor, she's good. Moved into a Grade 4 class (doesn't mean anything to me!) and I've signed her up to do monthly weekend Master Classes with the Royal Ballet school in Birmingham--bit of a trek from Wales for a 2 hour class, but it's great motivation for Tamzin.