Re: article on magnetic distraction rods

May 12, 2012

Hi ,

I just logged on to post some info on the new magnetic rods that are being

tested in the UK. I know we all hope for the best with casting, and ideally, if

the casting can cure our little ones than we will definitely continue down that

path. Sadly, I think that even though casting has been wonderful for our son

(aside from the small downfalls of cast life), growth rods still seem to be in

his future. I just got off the phone with one of the researchers at the San

Diego spine center who is actively working with the FDA to get approval to start

using this device in the US. I am going to stay in contact with them and also

start contacting the FDA myself to advocate for the approval of this treatment.

I was thinking that if we can get any other families together who are also

facing the need for growth rods, maybe we can raise awareness of how awesome

this procedure can be for the children and families who have exhausted the other

treatment options. Surgery for my guy has always been last resort, but if I have

to choose, this would be it! I'll keep you updated on any information I find out

and maybe this could be of benefit to other families as well.

Best to all of you,

, Mommy to two amazing boys Logan and Tommy Lee

>

> Just wanted to share...While this is def. a step in the right direction,

> Early Treatment with Mehtas specialized EDF should always be the first

> line of defense for progressive infantile/juvenile scoli. Spinal surgery

> must only be used as a last resort.

>

http://health..net/news/s/hsn/scoliosis-treatment-might-reduce-need-for-sur\

geries

> HRH

>

May 12, 2012

,

I was just speaking with our ortho at Portland Shriner's on Wednesday (Grace got her 9th cast) re: the magnetic rods. Portland Shriners is the ONLY hospital in the entire US that has been approved to use them. Just an FYI. He brought it up for consideration, but with Grace's rotation we aren't sure it would help.

Just thought I'd throw it out there that they are available in the US now. Dr. D at Portland said he will be trained to use them in the near future, but his collegue at the same hospital has done about a 1/2 dozen sets or more now.

He also mentioned there are a few other "new" procedures that have shown great success in the UK, but the US Scoliosis Org (or some similar name) is hesitant to back any new procedures because the last one they backed cost the organization millions of dollars in lawsuit fees (which they won, but were still out the money). He said they won't even hold their annual meetings in the US anymore because part of the lawsuit was that they were "training" doctors at the conference in new techniques. So being held outside the US, they have more freedom to discuss various "new" treatments.

Anyway, just thought it was interesting and I would share. I'm relying on memory of a conversation we had after 8+ hours waiting for Grace's casting (it was a very LONG day). So I'm fuzzy on the specifics of the organization name and what the other "new" procedures were. Sorry.

Jane

From: crazerach <crazerach29@...>infantile scoliosis treatment Sent: Friday, May 11, 2012 3:54 PMSubject: Re: article on magnetic distraction rods

Hi ,I just logged on to post some info on the new magnetic rods that are being tested in the UK. I know we all hope for the best with casting, and ideally, if the casting can cure our little ones than we will definitely continue down that path. Sadly, I think that even though casting has been wonderful for our son (aside from the small downfalls of cast life), growth rods still seem to be in his future. I just got off the phone with one of the researchers at the San Diego spine center who is actively working with the FDA to get approval to start using this device in the US. I am going to stay in contact with them and also start contacting the FDA myself to advocate for the approval of this treatment. I was thinking that if we can get any other families together who are also facing the need for growth rods, maybe we can raise awareness of how awesome this procedure can be for the children and families who have exhausted the other

treatment options. Surgery for my guy has always been last resort, but if I have to choose, this would be it! I'll keep you updated on any information I find out and maybe this could be of benefit to other families as well. Best to all of you,, Mommy to two amazing boys Logan and Tommy Lee >> Just wanted to share...While this is def. a step in the right direction,> Early Treatment with Mehtas specialized EDF should always be the first> line of defense for progressive infantile/juvenile scoli. Spinal surgery> must only be used as a last resort.> http://health..net/news/s/hsn/scoliosis-treatment-might-reduce-need-for-surgeries>

HRH>

May 12, 2012

Hello...Our son currently has the traditional growth rods although his surgeons in San Diego are conducting trials outside the US currently with the new MAGEC distraction rods that get lengthened once a month (give or take) by remote in office. It is not approved by the FDA yet but should be as the trials overseas are going well and have had short term great results. The rods in use at Portland Shriners are different magnetic rods called Phenix rods that get lengthened each day at home. They were designed in France and is used through an exemption clause basis in Australia. There have been more complications noted with the phenix rods, but they do have revised version available now, so maybe that will have better results. I am assuming Portland Shriners has a "prescription" approval to use the Phenix rods for now until the FDA approves all the different products. He Phenix rods differ from the MAGEC technology. Our son's surgeon in San Diego tried very hard to get Children's Hospital there to allow use of the MAGEC rods on a prescription basis until FDA approval but it was denied. Matson was going to be the first in US to have the MAGEC rods implanted, but for now we are stuck with traditional dual rods and surgeries every 6 months. We leave next week for his next lengthening survey as a matter of fact. Hoping and praying the MAGEC rods are approved soon, although apparently with the FDA it could take years. Best regards,Mom to Tyler, Matson (5casts, 2 braces, Dual growing rods lengthened 3 times age 6), and Lily (just diagnosed with Idiopathic Scoliosis at 18-20 degrees). Sent from my iPhoneOn May 11, 2012, at 4:40 PM, Jane Bigler <janemhar@...> wrote:

,

I was just speaking with our ortho at Portland Shriner's on Wednesday (Grace got her 9th cast) re: the magnetic rods. Portland Shriners is the ONLY hospital in the entire US that has been approved to use them. Just an FYI. He brought it up for consideration, but with Grace's rotation we aren't sure it would help.

Just thought I'd throw it out there that they are available in the US now. Dr. D at Portland said he will be trained to use them in the near future, but his collegue at the same hospital has done about a 1/2 dozen sets or more now.

He also mentioned there are a few other "new" procedures that have shown great success in the UK, but the US Scoliosis Org (or some similar name) is hesitant to back any new procedures because the last one they backed cost the organization millions of dollars in lawsuit fees (which they won, but were still out the money). He said they won't even hold their annual meetings in the US anymore because part of the lawsuit was that they were "training" doctors at the conference in new techniques. So being held outside the US, they have more freedom to discuss various "new" treatments.

Anyway, just thought it was interesting and I would share. I'm relying on memory of a conversation we had after 8+ hours waiting for Grace's casting (it was a very LONG day). So I'm fuzzy on the specifics of the organization name and what the other "new" procedures were. Sorry.

Jane

From: crazerach <crazerach29@...>infantile scoliosis treatment Sent: Friday, May 11, 2012 3:54 PMSubject: Re: article on magnetic distraction rods

Hi ,I just logged on to post some info on the new magnetic rods that are being tested in the UK. I know we all hope for the best with casting, and ideally, if the casting can cure our little ones than we will definitely continue down that path. Sadly, I think that even though casting has been wonderful for our son (aside from the small downfalls of cast life), growth rods still seem to be in his future. I just got off the phone with one of the researchers at the San Diego spine center who is actively working with the FDA to get approval to start using this device in the US. I am going to stay in contact with them and also start contacting the FDA myself to advocate for the approval of this treatment. I was thinking that if we can get any other families together who are also facing the need for growth rods, maybe we can raise awareness of how awesome this procedure can be for the children and families who have exhausted the other

treatment options. Surgery for my guy has always been last resort, but if I have to choose, this would be it! I'll keep you updated on any information I find out and maybe this could be of benefit to other families as well. Best to all of you,, Mommy to two amazing boys Logan and Tommy Lee >> Just wanted to share...While this is def. a step in the right direction,> Early Treatment with Mehtas specialized EDF should always be the first> line of defense for progressive infantile/juvenile scoli. Spinal surgery> must only be used as a last resort.> http://health..net/news/s/hsn/scoliosis-treatment-might-reduce-need-for-surgeries>

HRH>

May 13, 2012

There are a couple of surgeons trialling magnetic rods in Australia also. It

looks promising to me. A much more appealing option than 6 monthly surgeries to

lengthen standard rods.

I'm praying that casting and bracing holds us out long enough for the technique

to be more than a 'trial'.

Unfortunately we also know we will face surgery. It is just a matter of holding

out long enough for her to be bigger and therefore have less complications.

Thankfully there is no talk of surgery in the immediate future, but I feel more

optimistic knowing that with more time we will have better options available to

us.

Louise

Mum to evelyne (3)

www.lifewithbeals.blogspot.com

> > >

> > > Just wanted to share...While this is def. a step in the right direction,

> > > Early Treatment with Mehtas specialized EDF should always be the first

> > > line of defense for progressive infantile/juvenile scoli. Spinal surgery

> > > must only be used as a last resort.

> > >

http://health..net/news/s/hsn/scoliosis-treatment-might-reduce-need-for-sur\

geries

> > > HRH

> > >

> >

>

May 14, 2012

Thank you ! Please continue to keep me posted on the magnetic rod distraction hardware as I am too swamped to research it on my won. I did do research on the Phenix rod out of France a few years ago and found that reviews were mixed. I agree that magnetic rods are the way to go, if the child has missed their window at a cure with ET and the mag rod has been trialed properly (and is safe)…. My concern with the magnetic rod, is that it is a single rod construct and a single rod construct may be problematic with severe & rigid curves. Do you know if they’ve been able to make the magnetic rods of dual rod construct, yet (for severe cases)?Please keep us posted.HRH. From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of crazerachSent: Friday, May 11, 2012 4:54 PMinfantile scoliosis treatment Subject: Re: article on magnetic distraction rods Hi ,I just logged on to post some info on the new magnetic rods that are being tested in the UK. I know we all hope for the best with casting, and ideally, if the casting can cure our little ones than we will definitely continue down that path. Sadly, I think that even though casting has been wonderful for our son (aside from the small downfalls of cast life), growth rods still seem to be in his future. I just got off the phone with one of the researchers at the San Diego spine center who is actively working with the FDA to get approval to start using this device in the US. I am going to stay in contact with them and also start contacting the FDA myself to advocate for the approval of this treatment. I was thinking that if we can get any other families together who are also facing the need for growth rods, maybe we can raise awareness of how awesome this procedure can be for the children and families who have exhausted the other treatment options. Surgery for my guy has always been last resort, but if I have to choose, this would be it! I'll keep you updated on any information I find out and maybe this could be of benefit to other families as well. Best to all of you,, Mommy to two amazing boys Logan and Tommy Lee >> Just wanted to share...While this is def. a step in the right direction,> Early Treatment with Mehtas specialized EDF should always be the first> line of defense for progressive infantile/juvenile scoli. Spinal surgery> must only be used as a last resort.> http://health..net/news/s/hsn/scoliosis-treatment-might-reduce-need-for-surgeries> HRH>

May 14, 2012

Thank you ! Please continue to keep me posted on the magnetic rod distraction hardware as I am too swamped to research it on my won. I did do research on the Phenix rod out of France a few years ago and found that reviews were mixed. I agree that magnetic rods are the way to go, if the child has missed their window at a cure with ET and the mag rod has been trialed properly (and is safe)…. My concern with the magnetic rod, is that it is a single rod construct and a single rod construct may be problematic with severe & rigid curves. Do you know if they’ve been able to make the magnetic rods of dual rod construct, yet (for severe cases)?Please keep us posted.HRH. From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of crazerachSent: Friday, May 11, 2012 4:54 PMinfantile scoliosis treatment Subject: Re: article on magnetic distraction rods Hi ,I just logged on to post some info on the new magnetic rods that are being tested in the UK. I know we all hope for the best with casting, and ideally, if the casting can cure our little ones than we will definitely continue down that path. Sadly, I think that even though casting has been wonderful for our son (aside from the small downfalls of cast life), growth rods still seem to be in his future. I just got off the phone with one of the researchers at the San Diego spine center who is actively working with the FDA to get approval to start using this device in the US. I am going to stay in contact with them and also start contacting the FDA myself to advocate for the approval of this treatment. I was thinking that if we can get any other families together who are also facing the need for growth rods, maybe we can raise awareness of how awesome this procedure can be for the children and families who have exhausted the other treatment options. Surgery for my guy has always been last resort, but if I have to choose, this would be it! I'll keep you updated on any information I find out and maybe this could be of benefit to other families as well. Best to all of you,, Mommy to two amazing boys Logan and Tommy Lee >> Just wanted to share...While this is def. a step in the right direction,> Early Treatment with Mehtas specialized EDF should always be the first> line of defense for progressive infantile/juvenile scoli. Spinal surgery> must only be used as a last resort.> http://health..net/news/s/hsn/scoliosis-treatment-might-reduce-need-for-surgeries> HRH>

May 14, 2012

Hi Steph,Would you be able to get your hands on any of these articles?Â Iâ€™de be curious to see what is considered short term..Good luck and smooth sailing next week for Matsons lengthening.Please keep us posted.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of StephSent: Friday, May 11, 2012 6:06 PMinfantile scoliosis treatment Cc: infantile scoliosis treatment Subject: Re: Re: article on magnetic distraction rods Hello...Our son currently has the traditional growth rods although his surgeons in San Diego are conducting trials outside the US currently with the new MAGEC distraction rods that get lengthened once a month (give or take) by remote in office. It is not approved by the FDA yet but should be as the trials overseas are going well and have had short term great results. The rods in use at Portland Shriners are different magnetic rods called Phenix rods that get lengthened each day at home. They were designed in France and is used through an exemption clause basis in Australia. There have been more complications noted with the phenix rods, but they do have revised version available now, so maybe that will have better results. I am assuming Portland Shriners has a " prescription " approval to use the Phenix rods for now until the FDA approves all the different products. He Phenix rods differ from the MAGEC technology. Our son's surgeon in San Diego tried very hard to get Children's Hospital there to allow use of the MAGEC rods on a prescription basis until FDA approval but it was denied. Matson was going to be the first in US to have the MAGEC rods implanted, but for now we are stuck with traditional dual rods and surgeries every 6 months. We leave next week for his next lengthening survey as a matter of fact. Hoping and praying the MAGEC rods are approved soon, although apparently with the FDA it could take years. Best regards,Mom to Tyler, Matson (5casts, 2 braces, Dual growing rods lengthened 3 times age 6), and Lily (just diagnosed with Idiopathic Scoliosis at 18-20 degrees). Sent from my iPhoneOn May 11, 2012, at 4:40 PM, Jane Bigler <janemhar@...> wrote: , I was just speaking with our ortho at Portland Shriner's on Wednesday (Grace got her 9th cast) re: the magnetic rods. Portland Shriners is the ONLY hospital in the entire US that has been approved to use them. Just an FYI. He brought it up for consideration, but with Grace's rotation we aren't sure it would help. Just thought I'd throw it out there that they are available in the US now. Dr. D at Portland said he will be trained to use them in the near future, but his collegue at the same hospital has done about a 1/2 dozen sets or more now. He also mentioned there are a few other " new " procedures that have shown great success in the UK, but the US Scoliosis Org (or some similar name) is hesitant to back any new procedures because the last one they backed cost the organization millions of dollars in lawsuit fees (which they won, but were still out the money). He said they won't even hold their annual meetings in the US anymore because part of the lawsuit was that they were " training " doctors at the conference in new techniques. So being held outside the US, they have more freedom to discuss various " new " treatments. Anyway, just thought it was interesting and I would share. I'm relying on memory of a conversation we had after 8+ hours waiting for Grace's casting (it was a very LONG day). So I'm fuzzy on the specifics of the organization name and what the other " new " procedures were. Sorry. Jane From: crazerach <crazerach29@...>infantile scoliosis treatment Sent: Friday, May 11, 2012 3:54 PMSubject: Re: article on magnetic distraction rods Hi ,I just logged on to post some info on the new magnetic rods that are being tested in the UK. I know we all hope for the best with casting, and ideally, if the casting can cure our little ones than we will definitely continue down that path. Sadly, I think that even though casting has been wonderful for our son (aside from the small downfalls of cast life), growth rods still seem to be in his future. I just got off the phone with one of the researchers at the San Diego spine center who is actively working with the FDA to get approval to start using this device in the US. I am going to stay in contact with them and also start contacting the FDA myself to advocate for the approval of this treatment. I was thinking that if we can get any other families together who are also facing the need for growth rods, maybe we can raise awareness of how awesome this procedure can be for the children and families who have exhausted the other treatment options. Surgery for my guy has always been last resort, but if I have to choose, this would be it! I'll keep you updated on any information I find out and maybe this could be of benefit to other families as well. Best to all of you,, Mommy to two amazing boys Logan and Tommy Lee >> Just wanted to share...While this is def. a step in the right direction,> Early Treatment with Mehtas specialized EDF should always be the first> line of defense for progressive infantile/juvenile scoli. Spinal surgery> must only be used as a last resort.> http://health..net/news/s/hsn/scoliosis-treatment-might-reduce-need-for-surgeries> HRH>

May 14, 2012

Hi Steph,Would you be able to get your hands on any of these articles?Â Iâ€™de be curious to see what is considered short term..Good luck and smooth sailing next week for Matsons lengthening.Please keep us posted.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of StephSent: Friday, May 11, 2012 6:06 PMinfantile scoliosis treatment Cc: infantile scoliosis treatment Subject: Re: Re: article on magnetic distraction rods Hello...Our son currently has the traditional growth rods although his surgeons in San Diego are conducting trials outside the US currently with the new MAGEC distraction rods that get lengthened once a month (give or take) by remote in office. It is not approved by the FDA yet but should be as the trials overseas are going well and have had short term great results. The rods in use at Portland Shriners are different magnetic rods called Phenix rods that get lengthened each day at home. They were designed in France and is used through an exemption clause basis in Australia. There have been more complications noted with the phenix rods, but they do have revised version available now, so maybe that will have better results. I am assuming Portland Shriners has a " prescription " approval to use the Phenix rods for now until the FDA approves all the different products. He Phenix rods differ from the MAGEC technology. Our son's surgeon in San Diego tried very hard to get Children's Hospital there to allow use of the MAGEC rods on a prescription basis until FDA approval but it was denied. Matson was going to be the first in US to have the MAGEC rods implanted, but for now we are stuck with traditional dual rods and surgeries every 6 months. We leave next week for his next lengthening survey as a matter of fact. Hoping and praying the MAGEC rods are approved soon, although apparently with the FDA it could take years. Best regards,Mom to Tyler, Matson (5casts, 2 braces, Dual growing rods lengthened 3 times age 6), and Lily (just diagnosed with Idiopathic Scoliosis at 18-20 degrees). Sent from my iPhoneOn May 11, 2012, at 4:40 PM, Jane Bigler <janemhar@...> wrote: , I was just speaking with our ortho at Portland Shriner's on Wednesday (Grace got her 9th cast) re: the magnetic rods. Portland Shriners is the ONLY hospital in the entire US that has been approved to use them. Just an FYI. He brought it up for consideration, but with Grace's rotation we aren't sure it would help. Just thought I'd throw it out there that they are available in the US now. Dr. D at Portland said he will be trained to use them in the near future, but his collegue at the same hospital has done about a 1/2 dozen sets or more now. He also mentioned there are a few other " new " procedures that have shown great success in the UK, but the US Scoliosis Org (or some similar name) is hesitant to back any new procedures because the last one they backed cost the organization millions of dollars in lawsuit fees (which they won, but were still out the money). He said they won't even hold their annual meetings in the US anymore because part of the lawsuit was that they were " training " doctors at the conference in new techniques. So being held outside the US, they have more freedom to discuss various " new " treatments. Anyway, just thought it was interesting and I would share. I'm relying on memory of a conversation we had after 8+ hours waiting for Grace's casting (it was a very LONG day). So I'm fuzzy on the specifics of the organization name and what the other " new " procedures were. Sorry. Jane From: crazerach <crazerach29@...>infantile scoliosis treatment Sent: Friday, May 11, 2012 3:54 PMSubject: Re: article on magnetic distraction rods Hi ,I just logged on to post some info on the new magnetic rods that are being tested in the UK. I know we all hope for the best with casting, and ideally, if the casting can cure our little ones than we will definitely continue down that path. Sadly, I think that even though casting has been wonderful for our son (aside from the small downfalls of cast life), growth rods still seem to be in his future. I just got off the phone with one of the researchers at the San Diego spine center who is actively working with the FDA to get approval to start using this device in the US. I am going to stay in contact with them and also start contacting the FDA myself to advocate for the approval of this treatment. I was thinking that if we can get any other families together who are also facing the need for growth rods, maybe we can raise awareness of how awesome this procedure can be for the children and families who have exhausted the other treatment options. Surgery for my guy has always been last resort, but if I have to choose, this would be it! I'll keep you updated on any information I find out and maybe this could be of benefit to other families as well. Best to all of you,, Mommy to two amazing boys Logan and Tommy Lee >> Just wanted to share...While this is def. a step in the right direction,> Early Treatment with Mehtas specialized EDF should always be the first> line of defense for progressive infantile/juvenile scoli. Spinal surgery> must only be used as a last resort.> http://health..net/news/s/hsn/scoliosis-treatment-might-reduce-need-for-surgeries> HRH>

May 14, 2012

The MAGEC magnetic rods are Dual Rod constructStephSent from my iPhoneOn May 14, 2012, at 12:11 PM, " Hyatt" <heather@...> wrote:

Thank you ! Please continue to keep me posted on the magnetic rod distraction hardware as I am too swamped to research it on my won. I did do research on the Phenix rod out of France a few years ago and found that reviews were mixed. I agree that magnetic rods are the way to go, if the child has missed their window at a cure with ET and the mag rod has been trialed properly (and is safe)â€¦. My concern with the magnetic rod, is that it is a single rod construct and a single rod construct may be problematic with severe & rigid curves. Do you know if theyâ€™ve been able to make the magnetic rods of dual rod construct, yet (for severe cases)?Please keep us posted.HRH. From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of crazerachSent: Friday, May 11, 2012 4:54 PMinfantile scoliosis treatment Subject: Re: article on magnetic distraction rods Hi ,I just logged on to post some info on the new magnetic rods that are being tested in the UK. I know we all hope for the best with casting, and ideally, if the casting can cure our little ones than we will definitely continue down that path. Sadly, I think that even though casting has been wonderful for our son (aside from the small downfalls of cast life), growth rods still seem to be in his future. I just got off the phone with one of the researchers at the San Diego spine center who is actively working with the FDA to get approval to start using this device in the US. I am going to stay in contact with them and also start contacting the FDA myself to advocate for the approval of this treatment. I was thinking that if we can get any other families together who are also facing the need for growth rods, maybe we can raise awareness of how awesome this procedure can be for the children and families who have exhausted the other treatment options. Surgery for my guy has always been last resort, but if I have to choose, this would be it! I'll keep you updated on any information I find out and maybe this could be of benefit to other families as well. Best to all of you,, Mommy to two amazing boys Logan and Tommy Lee >> Just wanted to share...While this is def. a step in the right direction,> Early Treatment with Mehtas specialized EDF should always be the first> line of defense for progressive infantile/juvenile scoli. Spinal surgery> must only be used as a last resort.> http://health..net/news/s/hsn/scoliosis-treatment-might-reduce-need-for-surgeries> HRH>

May 14, 2012

The MAGEC magnetic rods are Dual Rod constructStephSent from my iPhoneOn May 14, 2012, at 12:11 PM, " Hyatt" <heather@...> wrote:

Thank you ! Please continue to keep me posted on the magnetic rod distraction hardware as I am too swamped to research it on my won. I did do research on the Phenix rod out of France a few years ago and found that reviews were mixed. I agree that magnetic rods are the way to go, if the child has missed their window at a cure with ET and the mag rod has been trialed properly (and is safe)â€¦. My concern with the magnetic rod, is that it is a single rod construct and a single rod construct may be problematic with severe & rigid curves. Do you know if theyâ€™ve been able to make the magnetic rods of dual rod construct, yet (for severe cases)?Please keep us posted.HRH. From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of crazerachSent: Friday, May 11, 2012 4:54 PMinfantile scoliosis treatment Subject: Re: article on magnetic distraction rods Hi ,I just logged on to post some info on the new magnetic rods that are being tested in the UK. I know we all hope for the best with casting, and ideally, if the casting can cure our little ones than we will definitely continue down that path. Sadly, I think that even though casting has been wonderful for our son (aside from the small downfalls of cast life), growth rods still seem to be in his future. I just got off the phone with one of the researchers at the San Diego spine center who is actively working with the FDA to get approval to start using this device in the US. I am going to stay in contact with them and also start contacting the FDA myself to advocate for the approval of this treatment. I was thinking that if we can get any other families together who are also facing the need for growth rods, maybe we can raise awareness of how awesome this procedure can be for the children and families who have exhausted the other treatment options. Surgery for my guy has always been last resort, but if I have to choose, this would be it! I'll keep you updated on any information I find out and maybe this could be of benefit to other families as well. Best to all of you,, Mommy to two amazing boys Logan and Tommy Lee >> Just wanted to share...While this is def. a step in the right direction,> Early Treatment with Mehtas specialized EDF should always be the first> line of defense for progressive infantile/juvenile scoli. Spinal surgery> must only be used as a last resort.> http://health..net/news/s/hsn/scoliosis-treatment-might-reduce-need-for-surgeries> HRH>

May 14, 2012

Excellent news! Wish they were around when my girl needed them! This is

wonderful for scoli kiddos...Ide love to learn more, so please, please

keep ISOP posted. And, if you can direct me/us to any articles that would

be great.

Thanks Steph.

HRH

> The MAGEC magnetic rods are Dual Rod construct

> Steph

>

> Sent from my iPhone

>

> On May 14, 2012, at 12:11 PM, " Hyatt "

> <heather@...> wrote:

>

>> Thank you ! Please continue to keep me posted on the magnetic rod

>> distraction hardware as I am too swamped to research it on my won. I

>> did do research on the Phenix rod out of France a few years ago and

>> found that reviews were mixed. I agree that magnetic rods are the way

>> to go, if the child has missed their window at a cure with ET and the

>> mag rod has been trialed properly (and is safe)â€¦.

>>

>> My concern with the magnetic rod, is that it is a single rod construct

>> and a single rod construct may be problematic with severe & rigid

>> curves. Do you know if theyâ€™ve been able to make the magnetic rods of

>> dual rod construct, yet (for severe cases)?

>>

>> Please keep us posted.

>>

>> HRH.

>>

>> From: infantile scoliosis treatment

>> [mailto:infantile scoliosis treatment ] On Behalf Of crazerach

>> Sent: Friday, May 11, 2012 4:54 PM

>> infantile scoliosis treatment

>> Subject: Re: article on magnetic distraction rods

>>

>> Hi ,

>> I just logged on to post some info on the new magnetic rods that are

>> being tested in the UK. I know we all hope for the best with casting,

>> and ideally, if the casting can cure our little ones than we will

>> definitely continue down that path. Sadly, I think that even though

>> casting has been wonderful for our son (aside from the small downfalls

>> of cast life), growth rods still seem to be in his future. I just got

>> off the phone with one of the researchers at the San Diego spine center

>> who is actively working with the FDA to get approval to start using this

>> device in the US. I am going to stay in contact with them and also start

>> contacting the FDA myself to advocate for the approval of this

>> treatment. I was thinking that if we can get any other families together

>> who are also facing the need for growth rods, maybe we can raise

>> awareness of how awesome this procedure can be for the children and

>> families who have exhausted the other treatment options. Surgery for my

>> guy has always been last resort, but if I have to choose, this would be

>> it! I'll keep you updated on any information I find out and maybe this

>> could be of benefit to other families as well.

>> Best to all of you,

>> , Mommy to two amazing boys Logan and Tommy Lee

>>

>> >

>> > Just wanted to share...While this is def. a step in the right

>> direction,

>> > Early Treatment with Mehtas specialized EDF should always be the first

>> > line of defense for progressive infantile/juvenile scoli. Spinal

>> surgery

>> > must only be used as a last resort.

>> >

http://health..net/news/s/hsn/scoliosis-treatment-might-reduce-need-for-sur\

geries

>> > HRH

>> >

>>

>

May 14, 2012