I would love for my son to try all these methods that I've read about on here: CLEAR, SCROTH, SEAS etc. but in reality, I just can't afford 5k to try them out. We are far from rich (financially), in a recession and work very hard just to make ends meet and provide a few extras for our kids when we can. We choose to live a moderate lifestyle in a house that's comfortable but needs total updating and both our vehicles are on the older side and I can't remember the last time we spent a weekend away let alone a two week holiday to some sunny spot. Not really talking about the Martha case here but the other treatments seem to be so expensive and well out of our reach.
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Martha Hawes improves her scoliosis w exercise
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Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
Halo Traction & 1st. surgery on March 22nd. 2011
Spinal Fusion on April 19th. 2011
Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon
http://tinyurl.com/Elias-Before
http://tinyurl.com/Elias-After
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Originally posted by Bigbluefrog View PostScientific evidence is measured.
Lung capcity
Xrays
Photos
Documentation
Which PT modality has evidence for that? Schroth had the best chance to gather evidence (operating since 1921, able researcher at the helm for over 10 years, etc.) but still no proof of avoiding surgery. If there was evidence PT avoided surgery then insurance would not only pay for PT but insist on it given the cost differential.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
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For the record
I have no personal experience with PT for scoliosis.
Nor is personal experience required to sort this out.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
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Okay, thanks, I'll go and look at Dingo's thread on exercise equipment.
That pic you posted about 'side shifting', what exactly is it and can you explain it a bit more?Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
Halo Traction & 1st. surgery on March 22nd. 2011
Spinal Fusion on April 19th. 2011
Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon
http://tinyurl.com/Elias-Before
http://tinyurl.com/Elias-After
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I'm wondering....
I notice many people who claim results(stabilization/lack of progression) with alternative methods have small curves ~20-30 deg. Since the latest research show specific genes which predict a strong possibility of progression as well as persons having the non-progressive scoliosis gene---there is a distinct possibility that those small curves would never progress anyway. Sooo all that costly treatment is unnecessary.
I would like to see rapidly progressing curves stopped dead in their tracks and reversed. Has anyone seen this and documented this---other than surgically???? Otherwise I can take non-surgical methods which "succeed" with a grain of salt..... unless the "success" has the documented scoliosis progression gene.
I was in a cast for a year with a fused spine(no hardware)....1956-1957 you would think that would have stopped it. But the following 40 years had my spine continuing to curve. The thing marched to it's own drummer.Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction
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Karen, I so, so agree with every single word. You have put it so well, all what I have been thinking but have been unable to actually put into words. Thankyou
Lorraine.Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.
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A perfect storm
The deal with AIS is a perfect storm of extremely desperate people and parents not knowing the state of evidence for conservative treatment modalities and not having the training to know what is what even on the most basic level. When the surgeons lay out the facts, these people don't necessarily ignore them but often also seek out alternative treatment purveyors who know they have no evidence their treatment avoided surgery for most patients but don't tell the people and parents that. And many of these types have no relevant training. That fact is also not conveyed to the bunnies sometimes and the bunnies don't know to ask.
That is a perfect storm.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
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Originally posted by Lorraine 1966 View PostKaren, I so, so agree with every single word. You have put it so well, all what I have been thinking but have been unable to actually put into words. Thankyou
Lorraine.mariaf305@yahoo.com
Mom to David, age 17, braced June 2000 to March 2004
Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)
https://www.facebook.com/groups/ScoliosisTethering/
http://pediatricspinefoundation.org/
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update, my dd does 1/2 hour a day of PT mainly schroth exercises. Her curves have been reduced by a few degrees in each curve.
We are very happy its working for us. Yes, her curves are improved or stabilized.
With the new measurements, her orthopedic surgeon said keep doing what your doing...so we will.
Please note she also wears a boston brace about 16 hours a day, and I give her fridays off.(bad mommy). Amazing she feels great without the brace no muscle issues, I believe the daily exercise helps keep her back strong.
I hope all of you have success too.age 15
Daughter diagnosed at age 13
T20 l23 10-09
T27 L27 1/2010
T10 L 20 in brace 4/2010
T22 L25 12/2010 out of brace
T24 L25 7/2011 out of brace
Type 1 diabetes- pumping
Wearing a Boston brace and Schroth therapy
Faith, Hope, and Love- the greatest of these is Love
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Originally posted by Bigbluefrog View Postupdate, my dd does 1/2 hour a day of PT mainly schroth exercises. Her curves have been reduced by a few degrees in each curve.
We are very happy its working for us. Yes, her curves are improved or stabilized.
With the new measurements, her orthopedic surgeon said keep doing what your doing...so we will.
Please note she also wears a boston brace about 16 hours a day, and I give her fridays off.(bad mommy). Amazing she feels great without the brace no muscle issues, I believe the daily exercise helps keep her back strong.
I hope all of you have success too.
Have you been offered Scoliscore? Maybe her score is <41.
About 75% of kids in your daughter's situation would be expected to have curves that never make it to 40* and might even regress on their own as was the case of that one girl with the low Scoliscore who was taken out of brace.
The 75% figure comes from at least two lines of independent evidence and corroborates the general knowledge that most small curves do not become surgical due to progression. Only a small percentage do. It's just now they can try to put a number on that "most" by using molecular biology (genetics).
Unless a PT regime can beat ~75% "success" by a mile then it is impossible to say if the PT (or bracing) did anything to improve the natural history. Sitting on the couch and easting ice has ~75% success rate of protecting kids from reaching surgical range also. The point is to beat natural history and there is very little range and very large error bars to contend with. It might never be shown unless explicitly working with kids with a Scoliscore >50.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
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We went in for another check, she has stayed stable with similar measured cobb angles.
The last six months we didn't do any chiropractor care or massages....and she maintained. The previous six months we did EVERYTHING...schroth, BRACE, professional massages, and chiropractor care and we saw a slight improvement.
I do not understand this scoliosis score? If this is so important why didn't the dr recommend it?
She is taller and little change in her curves, so hopefully it will remain stable. She has to do 1/2 hour of PT every day, but you know teenagers its more like 4 times a week, we should wear the brace 23 hours a day, its more like 10-16 hours a day. I don't push her since its been stable...interesting concept about the scoliosis score..but if we did nothing and it progressed like before she was braced I would feel horrible.
I think the regimen is working, and we have been able to relax a bit on some days ...and still see positive results. She is still growing, the brace has not impacted her social life at all, she wears it to school, and is pretty confident about it. Even says its a great armor against boys who like to give kidney jabs...she gets a kick out of them trying to do that with her brace. YEs, even had a few admirers...unfortunately we don't allow dating till sixteen..
I haven't been online much...got one son getting married and one in bootcamp...life goes on, keeping very busy.
I still believe exercise is beneficial, but not always a cure all some scoliosis may need intervention, but it does make me feel better too...and I got an injured foot, so these feel good endorphins will have to wait...but Amber looks great her back looks great and she feels great...so we are very happy with continuing with schroth care and bracing...I would be curious if we added chiropractor care and massages and see if it does improve...again..it takes great effort to be so dedicated.age 15
Daughter diagnosed at age 13
T20 l23 10-09
T27 L27 1/2010
T10 L 20 in brace 4/2010
T22 L25 12/2010 out of brace
T24 L25 7/2011 out of brace
Type 1 diabetes- pumping
Wearing a Boston brace and Schroth therapy
Faith, Hope, and Love- the greatest of these is Love
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I must also say, we only went for the first week of Schroth there is a 2nd week to do, but we haven't done that yet...curious if we did what kind of results we would see!
we have a son in Marine boot camp, so we plan on attending his graduation...looking forward to that.
So that 2nd week will have to wait...bills keep popping up @+@age 15
Daughter diagnosed at age 13
T20 l23 10-09
T27 L27 1/2010
T10 L 20 in brace 4/2010
T22 L25 12/2010 out of brace
T24 L25 7/2011 out of brace
Type 1 diabetes- pumping
Wearing a Boston brace and Schroth therapy
Faith, Hope, and Love- the greatest of these is Love
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Originally posted by Pooka1 View PostI have no personal experience with PT for scoliosis.
be happy for us, the therapy we have chosen is working for us, she is pain free, and stabilized, still growing, and continues to do schroth care and wear her brace.
What a blessing!
when we did nothing but watch and wait it progressed quite significantly...I am glad that we have found something that works for us!!!
I pray that others find that too..whether you need surgery or can wear a brace, I pray for your success too.age 15
Daughter diagnosed at age 13
T20 l23 10-09
T27 L27 1/2010
T10 L 20 in brace 4/2010
T22 L25 12/2010 out of brace
T24 L25 7/2011 out of brace
Type 1 diabetes- pumping
Wearing a Boston brace and Schroth therapy
Faith, Hope, and Love- the greatest of these is Love
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We would all like to see improvements on our curves, but I'm very sceptical about these "treatments", seems to me nothing has changed in this field over the last decades, which is frustrating as medecine can do incredible things nowadays. For this reason I think, every now and then someone claims a new promising method, only to delude those affected.
This one (http://notgillianmckeith.blogspot.com/) is claiming fantastic improvements with the Scoliosis SOS Clinic, I just wonder, another snake (expensive) oil? If these new treatments worked so well, wouldn't they be largely available in 1st world countries at a price somehow affordable to the masses?
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Great post, Alistair.
I think my favorite line was one time when some of these 'alternative' treatment methods were being discussed (not on this forum) and somebody said:
"alternatives to what? to things that work?"
I don't wish to debate the topic with anyone, I just found that line very funny.mariaf305@yahoo.com
Mom to David, age 17, braced June 2000 to March 2004
Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)
https://www.facebook.com/groups/ScoliosisTethering/
http://pediatricspinefoundation.org/
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