Re: Max: Surgery

[Guest guest]

Sandi,

Thank you or the offer. You are so kind. I am going to look into

this more. I plan to call Dr. Sturm first thing in the morning and

get more of his thoughts. I'm sure he'll discuss everything at the

next cast change on 10/9/07. I'll keep you posted.

Aekta

>

> Carmell - Dr. Lenke is here in St. Louis.

>

> Aekta - if you should need a phenomenal pediatric spinal surgeon,

as

> much as I love Dr. Sturm, Dr. Lenke's reputation is amazing. He is

> world-reknowned. It may be worth talking to him about your

options,

> if you have the energy and time.

>

> I would ALWAYS be happy to make up a bedroom for you in our house.

> Piper doesn't sleep in her bed anyway. We're just outside of St.

> Louis. There is also a wonderful facility where you can " rent " a

room

> near St. Louis Shriner's. It's called Haven House and the cost is

$25

> a night. The Shriner's Hospital here is in a very affluent area,

and

> I wouldn't hesitate to stay nearby. The Hilton is within walking

> distance

> http://www.havenhousestl.org/

>

> Sandi

>

>

> <<<Dr. Lenke in MN is one of the surgeons doing studies on kids

with Shilla.>>>

>

[Guest guest]

Sandi,

Thank you or the offer. You are so kind. I am going to look into

this more. I plan to call Dr. Sturm first thing in the morning and

get more of his thoughts. I'm sure he'll discuss everything at the

next cast change on 10/9/07. I'll keep you posted.

Aekta

>

> Carmell - Dr. Lenke is here in St. Louis.

>

> Aekta - if you should need a phenomenal pediatric spinal surgeon,

as

> much as I love Dr. Sturm, Dr. Lenke's reputation is amazing. He is

> world-reknowned. It may be worth talking to him about your

options,

> if you have the energy and time.

>

> I would ALWAYS be happy to make up a bedroom for you in our house.

> Piper doesn't sleep in her bed anyway. We're just outside of St.

> Louis. There is also a wonderful facility where you can " rent " a

room

> near St. Louis Shriner's. It's called Haven House and the cost is

$25

> a night. The Shriner's Hospital here is in a very affluent area,

and

> I wouldn't hesitate to stay nearby. The Hilton is within walking

> distance

> http://www.havenhousestl.org/

>

> Sandi

>

>

> <<<Dr. Lenke in MN is one of the surgeons doing studies on kids

with Shilla.>>>

>

[Guest guest]

Tasha,

Thank you so much. I knew this day would come, but who thought so

soon and with a newq baby on the way?

How is doing in his brace?

Aekta

Max had his post-op on friday from his cast Miss Mehta placed on

> 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

>

> Not good news at all. Max's curve is at the highest ever.

>

> On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

Miss

> Mehta placed his cast and the curve was reduced to 46 degrees.

>

> Friday's in cast x-ray showed Max's curve at 66 degrees.

Basically

> this cast also did not hold Max's curve.

>

> Dr. Sturm told us after 1 full year of casting every 8 weeks, the

> curve is still progressing. His recommendation is growing rod

> surgery right after the first of the year. So Max will have more

2

> casts. Max is scheduled 10/9/07 for his next cast change.

>

> We knew this day was coming, but we were hopeful to buy a couple

> more years. We are grateful to have had casting as an option as

we

> were able to prolong surgery for 1 1/2 years.

>

> To make everything more challenging, I am scheduled for my c-

section

> on 12/31/07. So the first 2 months of 2008 will be very

interesting

> and challenging. Cree (Dr. Sturm's nurse) is going to talk

to

> Dr. Sturm and see if we can schedule surgery late January/early

> February so I can have some healing time from my c-section.

>

> Needless to say I was very shocked by the news on friday and

> couldn't think of 1 question to ask. If anyone has any thoughts

or

> questions that I should ask, please share. Is anyone aware of

other

> treatment options? Max does not qualify for stapling. We have a

few

> months to get all of the questions answered.

>

> I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> lower on his back (lumbar region), and his chest wall is not

> compromised, he would not recommend the VEPTER.

>

> Max will be exactly 2 1/2 at the time of surgery.

>

> Thank you,

>

> Aekta

>

>

>

>

>

>

> ---------------------------------

> Yahoo! oneSearch: Finally, mobile search that gives answers, not

web links.

>

>

[Guest guest]

Tasha,

Thank you so much. I knew this day would come, but who thought so

soon and with a newq baby on the way?

How is doing in his brace?

Aekta

Max had his post-op on friday from his cast Miss Mehta placed on

> 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

>

> Not good news at all. Max's curve is at the highest ever.

>

> On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

Miss

> Mehta placed his cast and the curve was reduced to 46 degrees.

>

> Friday's in cast x-ray showed Max's curve at 66 degrees.

Basically

> this cast also did not hold Max's curve.

>

> Dr. Sturm told us after 1 full year of casting every 8 weeks, the

> curve is still progressing. His recommendation is growing rod

> surgery right after the first of the year. So Max will have more

2

> casts. Max is scheduled 10/9/07 for his next cast change.

>

> We knew this day was coming, but we were hopeful to buy a couple

> more years. We are grateful to have had casting as an option as

we

> were able to prolong surgery for 1 1/2 years.

>

> To make everything more challenging, I am scheduled for my c-

section

> on 12/31/07. So the first 2 months of 2008 will be very

interesting

> and challenging. Cree (Dr. Sturm's nurse) is going to talk

to

> Dr. Sturm and see if we can schedule surgery late January/early

> February so I can have some healing time from my c-section.

>

> Needless to say I was very shocked by the news on friday and

> couldn't think of 1 question to ask. If anyone has any thoughts

or

> questions that I should ask, please share. Is anyone aware of

other

> treatment options? Max does not qualify for stapling. We have a

few

> months to get all of the questions answered.

>

> I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> lower on his back (lumbar region), and his chest wall is not

> compromised, he would not recommend the VEPTER.

>

> Max will be exactly 2 1/2 at the time of surgery.

>

> Thank you,

>

> Aekta

>

>

>

>

>

>

> ---------------------------------

> Yahoo! oneSearch: Finally, mobile search that gives answers, not

web links.

>

>

[Guest guest]

,

I plan to see what our other options are. Dr. Sturm was our 4th

opinion, Dr. 5th, and Miss Mehta 6th. I'm not givign

up.....trust me, I will never give up on Max!

Thank you for your thoughts.

Aekta

>

> I'm so sorry to hear this Aekta. I don't really know much about

the growing rods vs VEPTR, but getting a second opinion probably

wouldn't hurt before deciding exactly what you want to do regarding

surgery.

>

> I hope and pray for a great outcome for little Max.

>

>

> Noelle (12-2-01)

> Ian (8-15-04)

> Max: Surgery

>

>

> Max had his post-op on friday from his cast Miss Mehta placed on

> 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

>

> Not good news at all. Max's curve is at the highest ever.

>

> On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

Miss

> Mehta placed his cast and the curve was reduced to 46 degrees.

>

> Friday's in cast x-ray showed Max's curve at 66 degrees.

Basically

> this cast also did not hold Max's curve.

>

> Dr. Sturm told us after 1 full year of casting every 8 weeks,

the

> curve is still progressing. His recommendation is growing rod

> surgery right after the first of the year. So Max will have more

2

> casts. Max is scheduled 10/9/07 for his next cast change.

>

> We knew this day was coming, but we were hopeful to buy a couple

> more years. We are grateful to have had casting as an option as

we

> were able to prolong surgery for 1 1/2 years.

>

> To make everything more challenging, I am scheduled for my c-

section

> on 12/31/07. So the first 2 months of 2008 will be very

interesting

> and challenging. Cree (Dr. Sturm's nurse) is going to talk

to

> Dr. Sturm and see if we can schedule surgery late January/early

> February so I can have some healing time from my c-section.

>

> Needless to say I was very shocked by the news on friday and

> couldn't think of 1 question to ask. If anyone has any thoughts

or

> questions that I should ask, please share. Is anyone aware of

other

> treatment options? Max does not qualify for stapling. We have a

few

> months to get all of the questions answered.

>

> I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> lower on his back (lumbar region), and his chest wall is not

> compromised, he would not recommend the VEPTER.

>

> Max will be exactly 2 1/2 at the time of surgery.

>

> Thank you,

>

> Aekta

>

>

>

>

>

>

[Guest guest]

Hi Tina,

Thank you. I'mnot overwhlemed about the new baby. I want to take

one event/holiday at a time and enjoy it. I just feel bad that Max

has to go thru this. But, I know what ever surgeyr he needs, it for

the best, and he'll do great!

Dr. Sturm wanted Max recasted ASAP. So, said the first cast

date was 10/9/07...so we had no choice.

How is Sophia doing? Did she have a good 1st birthday?

Aekta

>

> Aekta,

> I am so sorry to hear about Max's news. That is heartbreaking,

especially since he is still so young. Please know that you are all

in our prayers during this difficult time. I have no doubt that you

will make the right decision for him. Please take care of yourself

and the baby too. I can't imagine how overwhelmed you must feel with

everything happening all at once. Sophia will be getting recast

10/16 so I'm afraid we will miss you guys by a week in Chicago.

Please keep us posted and know that you have many supporters here!

> Tina

>

>

> Max: Surgery

>

>

> Max had his post-op on friday from his cast Miss Mehta placed on

> 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

>

> Not good news at all. Max's curve is at the highest ever.

>

> On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

Miss

> Mehta placed his cast and the curve was reduced to 46 degrees.

>

> Friday's in cast x-ray showed Max's curve at 66 degrees.

Basically

> this cast also did not hold Max's curve.

>

> Dr. Sturm told us after 1 full year of casting every 8 weeks,

the

> curve is still progressing. His recommendation is growing rod

> surgery right after the first of the year. So Max will have more

2

> casts. Max is scheduled 10/9/07 for his next cast change.

>

> We knew this day was coming, but we were hopeful to buy a couple

> more years. We are grateful to have had casting as an option as

we

> were able to prolong surgery for 1 1/2 years.

>

> To make everything more challenging, I am scheduled for my c-

section

> on 12/31/07. So the first 2 months of 2008 will be very

interesting

> and challenging. Cree (Dr. Sturm's nurse) is going to talk

to

> Dr. Sturm and see if we can schedule surgery late January/early

> February so I can have some healing time from my c-section.

>

> Needless to say I was very shocked by the news on friday and

> couldn't think of 1 question to ask. If anyone has any thoughts

or

> questions that I should ask, please share. Is anyone aware of

other

> treatment options? Max does not qualify for stapling. We have a

few

> months to get all of the questions answered.

>

> I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> lower on his back (lumbar region), and his chest wall is not

> compromised, he would not recommend the VEPTER.

>

> Max will be exactly 2 1/2 at the time of surgery.

>

> Thank you,

>

> Aekta

>

>

>

>

>

>

[Guest guest]

Hi Tina,

Thank you. I'mnot overwhlemed about the new baby. I want to take

one event/holiday at a time and enjoy it. I just feel bad that Max

has to go thru this. But, I know what ever surgeyr he needs, it for

the best, and he'll do great!

Dr. Sturm wanted Max recasted ASAP. So, said the first cast

date was 10/9/07...so we had no choice.

How is Sophia doing? Did she have a good 1st birthday?

Aekta

>

> Aekta,

> I am so sorry to hear about Max's news. That is heartbreaking,

especially since he is still so young. Please know that you are all

in our prayers during this difficult time. I have no doubt that you

will make the right decision for him. Please take care of yourself

and the baby too. I can't imagine how overwhelmed you must feel with

everything happening all at once. Sophia will be getting recast

10/16 so I'm afraid we will miss you guys by a week in Chicago.

Please keep us posted and know that you have many supporters here!

> Tina

>

>

> Max: Surgery

>

>

> Max had his post-op on friday from his cast Miss Mehta placed on

> 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

>

> Not good news at all. Max's curve is at the highest ever.

>

> On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

Miss

> Mehta placed his cast and the curve was reduced to 46 degrees.

>

> Friday's in cast x-ray showed Max's curve at 66 degrees.

Basically

> this cast also did not hold Max's curve.

>

> Dr. Sturm told us after 1 full year of casting every 8 weeks,

the

> curve is still progressing. His recommendation is growing rod

> surgery right after the first of the year. So Max will have more

2

> casts. Max is scheduled 10/9/07 for his next cast change.

>

> We knew this day was coming, but we were hopeful to buy a couple

> more years. We are grateful to have had casting as an option as

we

> were able to prolong surgery for 1 1/2 years.

>

> To make everything more challenging, I am scheduled for my c-

section

> on 12/31/07. So the first 2 months of 2008 will be very

interesting

> and challenging. Cree (Dr. Sturm's nurse) is going to talk

to

> Dr. Sturm and see if we can schedule surgery late January/early

> February so I can have some healing time from my c-section.

>

> Needless to say I was very shocked by the news on friday and

> couldn't think of 1 question to ask. If anyone has any thoughts

or

> questions that I should ask, please share. Is anyone aware of

other

> treatment options? Max does not qualify for stapling. We have a

few

> months to get all of the questions answered.

>

> I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> lower on his back (lumbar region), and his chest wall is not

> compromised, he would not recommend the VEPTER.

>

> Max will be exactly 2 1/2 at the time of surgery.

>

> Thank you,

>

> Aekta

>

>

>

>

>

>

[Guest guest]

Hi Tina,

Thank you. I'mnot overwhlemed about the new baby. I want to take

one event/holiday at a time and enjoy it. I just feel bad that Max

has to go thru this. But, I know what ever surgeyr he needs, it for

the best, and he'll do great!

Dr. Sturm wanted Max recasted ASAP. So, said the first cast

date was 10/9/07...so we had no choice.

How is Sophia doing? Did she have a good 1st birthday?

Aekta

>

> Aekta,

> I am so sorry to hear about Max's news. That is heartbreaking,

especially since he is still so young. Please know that you are all

in our prayers during this difficult time. I have no doubt that you

will make the right decision for him. Please take care of yourself

and the baby too. I can't imagine how overwhelmed you must feel with

everything happening all at once. Sophia will be getting recast

10/16 so I'm afraid we will miss you guys by a week in Chicago.

Please keep us posted and know that you have many supporters here!

> Tina

>

>

> Max: Surgery

>

>

> Max had his post-op on friday from his cast Miss Mehta placed on

> 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

>

> Not good news at all. Max's curve is at the highest ever.

>

> On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

Miss

> Mehta placed his cast and the curve was reduced to 46 degrees.

>

> Friday's in cast x-ray showed Max's curve at 66 degrees.

Basically

> this cast also did not hold Max's curve.

>

> Dr. Sturm told us after 1 full year of casting every 8 weeks,

the

> curve is still progressing. His recommendation is growing rod

> surgery right after the first of the year. So Max will have more

2

> casts. Max is scheduled 10/9/07 for his next cast change.

>

> We knew this day was coming, but we were hopeful to buy a couple

> more years. We are grateful to have had casting as an option as

we

> were able to prolong surgery for 1 1/2 years.

>

> To make everything more challenging, I am scheduled for my c-

section

> on 12/31/07. So the first 2 months of 2008 will be very

interesting

> and challenging. Cree (Dr. Sturm's nurse) is going to talk

to

> Dr. Sturm and see if we can schedule surgery late January/early

> February so I can have some healing time from my c-section.

>

> Needless to say I was very shocked by the news on friday and

> couldn't think of 1 question to ask. If anyone has any thoughts

or

> questions that I should ask, please share. Is anyone aware of

other

> treatment options? Max does not qualify for stapling. We have a

few

> months to get all of the questions answered.

>

> I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> lower on his back (lumbar region), and his chest wall is not

> compromised, he would not recommend the VEPTER.

>

> Max will be exactly 2 1/2 at the time of surgery.

>

> Thank you,

>

> Aekta

>

>

>

>

>

>

[Guest guest]

Jacki,

Thakn you for your thoughts and information.

Dr. Sturm has done both VEPTERs and growing rods. On 10/08/07, he'll

get his cast off and we have an appointment to get an echo.

10/09/07, he'll get a new cast. Once we get the echo, we'll see the

geenticist. Dr. Sturm strongly believes Max has Marfans or some

connective tissue disorder, which is the caise of the progessive

scoliosis.

I plan to continue the research on the VEPTER and pick Dr. Sturms

brain some more. Fortunately we have 3 months to do more research.

Thanks,

Aekta

> >

> > Max had his post-op on friday from his cast Miss Mehta placed on

> > 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

> >

> > Not good news at all. Max's curve is at the highest ever.

> >

> > On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

> Miss

> > Mehta placed his cast and the curve was reduced to 46 degrees.

> >

> > Friday's in cast x-ray showed Max's curve at 66 degrees.

Basically

> > this cast also did not hold Max's curve.

> >

> > Dr. Sturm told us after 1 full year of casting every 8 weeks,

the

> > curve is still progressing. His recommendation is growing rod

> > surgery right after the first of the year. So Max will have more

2

> > casts. Max is scheduled 10/9/07 for his next cast change.

> >

> > We knew this day was coming, but we were hopeful to buy a couple

> > more years. We are grateful to have had casting as an option as

we

> > were able to prolong surgery for 1 1/2 years.

> >

> > To make everything more challenging, I am scheduled for my c-

> section

> > on 12/31/07. So the first 2 months of 2008 will be very

> interesting

> > and challenging. Cree (Dr. Sturm's nurse) is going to talk

to

> > Dr. Sturm and see if we can schedule surgery late January/early

> > February so I can have some healing time from my c-section.

> >

> > Needless to say I was very shocked by the news on friday and

> > couldn't think of 1 question to ask. If anyone has any thoughts

or

> > questions that I should ask, please share. Is anyone aware of

other

> > treatment options? Max does not qualify for stapling. We have a

> few

> > months to get all of the questions answered.

> >

> > I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> > lower on his back (lumbar region), and his chest wall is not

> > compromised, he would not recommend the VEPTER.

> >

> > Max will be exactly 2 1/2 at the time of surgery.

> >

> > Thank you,

> >

> > Aekta

> >

>

[Guest guest]

Jacki,

Thakn you for your thoughts and information.

Dr. Sturm has done both VEPTERs and growing rods. On 10/08/07, he'll

get his cast off and we have an appointment to get an echo.

10/09/07, he'll get a new cast. Once we get the echo, we'll see the

geenticist. Dr. Sturm strongly believes Max has Marfans or some

connective tissue disorder, which is the caise of the progessive

scoliosis.

I plan to continue the research on the VEPTER and pick Dr. Sturms

brain some more. Fortunately we have 3 months to do more research.

Thanks,

Aekta

> >

> > Max had his post-op on friday from his cast Miss Mehta placed on

> > 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

> >

> > Not good news at all. Max's curve is at the highest ever.

> >

> > On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

> Miss

> > Mehta placed his cast and the curve was reduced to 46 degrees.

> >

> > Friday's in cast x-ray showed Max's curve at 66 degrees.

Basically

> > this cast also did not hold Max's curve.

> >

> > Dr. Sturm told us after 1 full year of casting every 8 weeks,

the

> > curve is still progressing. His recommendation is growing rod

> > surgery right after the first of the year. So Max will have more

2

> > casts. Max is scheduled 10/9/07 for his next cast change.

> >

> > We knew this day was coming, but we were hopeful to buy a couple

> > more years. We are grateful to have had casting as an option as

we

> > were able to prolong surgery for 1 1/2 years.

> >

> > To make everything more challenging, I am scheduled for my c-

> section

> > on 12/31/07. So the first 2 months of 2008 will be very

> interesting

> > and challenging. Cree (Dr. Sturm's nurse) is going to talk

to

> > Dr. Sturm and see if we can schedule surgery late January/early

> > February so I can have some healing time from my c-section.

> >

> > Needless to say I was very shocked by the news on friday and

> > couldn't think of 1 question to ask. If anyone has any thoughts

or

> > questions that I should ask, please share. Is anyone aware of

other

> > treatment options? Max does not qualify for stapling. We have a

> few

> > months to get all of the questions answered.

> >

> > I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> > lower on his back (lumbar region), and his chest wall is not

> > compromised, he would not recommend the VEPTER.

> >

> > Max will be exactly 2 1/2 at the time of surgery.

> >

> > Thank you,

> >

> > Aekta

> >

>

[Guest guest]

Jill,

Thank you for yoru thoughts. It means so much.

Aekta

>

> > Max had his post-op on friday from his cast Miss

> > Mehta placed on

> > 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the

> > ETP.

> >

> > Not good news at all. Max's curve is at the highest

> > ever.

> >

> > On 8/8/07 after 6 casts...his curve was 80 degrees

> > out of cast. Miss

> > Mehta placed his cast and the curve was reduced to

> > 46 degrees.

> >

> > Friday's in cast x-ray showed Max's curve at 66

> > degrees. Basically

> > this cast also did not hold Max's curve.

> >

> > Dr. Sturm told us after 1 full year of casting every

> > 8 weeks, the

> > curve is still progressing. His recommendation is

> > growing rod

> > surgery right after the first of the year. So Max

> > will have more 2

> > casts. Max is scheduled 10/9/07 for his next cast

> > change.

> >

> > We knew this day was coming, but we were hopeful to

> > buy a couple

> > more years. We are grateful to have had casting as

> > an option as we

> > were able to prolong surgery for 1 1/2 years.

> >

> > To make everything more challenging, I am scheduled

> > for my c-section

> > on 12/31/07. So the first 2 months of 2008 will be

> > very interesting

> > and challenging. Cree (Dr. Sturm's nurse) is

> > going to talk to

> > Dr. Sturm and see if we can schedule surgery late

> > January/early

> > February so I can have some healing time from my

> > c-section.

> >

> > Needless to say I was very shocked by the news on

> > friday and

> > couldn't think of 1 question to ask. If anyone has

> > any thoughts or

> > questions that I should ask, please share. Is anyone

> > aware of other

> > treatment options? Max does not qualify for

> > stapling. We have a few

> > months to get all of the questions answered.

> >

> > I did ask about the VEPTER. Dr. Sturm said since

> > Max's curve is

> > lower on his back (lumbar region), and his chest

> > wall is not

> > compromised, he would not recommend the VEPTER.

> >

> > Max will be exactly 2 1/2 at the time of surgery.

> >

> > Thank you,

> >

> > Aekta

> >

> >

> >

>

>

>

>

>

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>

[Guest guest]

Jill,

Thank you for yoru thoughts. It means so much.

Aekta

>

> > Max had his post-op on friday from his cast Miss

> > Mehta placed on

> > 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the

> > ETP.

> >

> > Not good news at all. Max's curve is at the highest

> > ever.

> >

> > On 8/8/07 after 6 casts...his curve was 80 degrees

> > out of cast. Miss

> > Mehta placed his cast and the curve was reduced to

> > 46 degrees.

> >

> > Friday's in cast x-ray showed Max's curve at 66

> > degrees. Basically

> > this cast also did not hold Max's curve.

> >

> > Dr. Sturm told us after 1 full year of casting every

> > 8 weeks, the

> > curve is still progressing. His recommendation is

> > growing rod

> > surgery right after the first of the year. So Max

> > will have more 2

> > casts. Max is scheduled 10/9/07 for his next cast

> > change.

> >

> > We knew this day was coming, but we were hopeful to

> > buy a couple

> > more years. We are grateful to have had casting as

> > an option as we

> > were able to prolong surgery for 1 1/2 years.

> >

> > To make everything more challenging, I am scheduled

> > for my c-section

> > on 12/31/07. So the first 2 months of 2008 will be

> > very interesting

> > and challenging. Cree (Dr. Sturm's nurse) is

> > going to talk to

> > Dr. Sturm and see if we can schedule surgery late

> > January/early

> > February so I can have some healing time from my

> > c-section.

> >

> > Needless to say I was very shocked by the news on

> > friday and

> > couldn't think of 1 question to ask. If anyone has

> > any thoughts or

> > questions that I should ask, please share. Is anyone

> > aware of other

> > treatment options? Max does not qualify for

> > stapling. We have a few

> > months to get all of the questions answered.

> >

> > I did ask about the VEPTER. Dr. Sturm said since

> > Max's curve is

> > lower on his back (lumbar region), and his chest

> > wall is not

> > compromised, he would not recommend the VEPTER.

> >

> > Max will be exactly 2 1/2 at the time of surgery.

> >

> > Thank you,

> >

> > Aekta

> >

> >

> >

>

>

>

>

>

_____________________________________________________________________

_______________

> Building a website is a piece of cake. Yahoo! Small Business gives

you all the tools to get online.

> http://smallbusiness.yahoo.com/webhosting

>

[Guest guest]

Hi ,

Thank you for the thoughts. I will be thinking of . I will

have to ask Dr. Sturm more about the VEPTR as it seems other

children have low curves and getting VEPTRs.

Aekta

Max had his post-op on

friday from his cast Miss Mehta placed on

> 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

>

> Not good news at all. Max's curve is at the highest ever.

>

> On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

Miss

> Mehta placed his cast and the curve was reduced to 46 degrees.

>

> Friday's in cast x-ray showed Max's curve at 66 degrees. Basically

> this cast also did not hold Max's curve.

>

> Dr. Sturm told us after 1 full year of casting every 8 weeks, the

> curve is still progressing. His recommendation is growing rod

> surgery right after the first of the year. So Max will have more 2

> casts. Max is scheduled 10/9/07 for his next cast change.

>

> We knew this day was coming, but we were hopeful to buy a couple

> more years. We are grateful to have had casting as an option as we

> were able to prolong surgery for 1 1/2 years.

>

> To make everything more challenging, I am scheduled for my c-

section

> on 12/31/07. So the first 2 months of 2008 will be very

interesting

> and challenging. Cree (Dr. Sturm's nurse) is going to talk

to

> Dr. Sturm and see if we can schedule surgery late January/early

> February so I can have some healing time from my c-section.

>

> Needless to say I was very shocked by the news on friday and

> couldn't think of 1 question to ask. If anyone has any thoughts or

> questions that I should ask, please share. Is anyone aware of

other

> treatment options? Max does not qualify for stapling. We have a

few

> months to get all of the questions answered.

>

> I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> lower on his back (lumbar region), and his chest wall is not

> compromised, he would not recommend the VEPTER.

>

> Max will be exactly 2 1/2 at the time of surgery.

>

> Thank you,

>

> Aekta

>

>

>

>

>

>

> ---------------------------------

> Got a little couch potato?

> Check out fun summer activities for kids.

>

>

[Guest guest]

Hi ,

Thank you for the thoughts. I will be thinking of . I will

have to ask Dr. Sturm more about the VEPTR as it seems other

children have low curves and getting VEPTRs.

Aekta

Max had his post-op on

friday from his cast Miss Mehta placed on

> 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

>

> Not good news at all. Max's curve is at the highest ever.

>

> On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

Miss

> Mehta placed his cast and the curve was reduced to 46 degrees.

>

> Friday's in cast x-ray showed Max's curve at 66 degrees. Basically

> this cast also did not hold Max's curve.

>

> Dr. Sturm told us after 1 full year of casting every 8 weeks, the

> curve is still progressing. His recommendation is growing rod

> surgery right after the first of the year. So Max will have more 2

> casts. Max is scheduled 10/9/07 for his next cast change.

>

> We knew this day was coming, but we were hopeful to buy a couple

> more years. We are grateful to have had casting as an option as we

> were able to prolong surgery for 1 1/2 years.

>

> To make everything more challenging, I am scheduled for my c-

section

> on 12/31/07. So the first 2 months of 2008 will be very

interesting

> and challenging. Cree (Dr. Sturm's nurse) is going to talk

to

> Dr. Sturm and see if we can schedule surgery late January/early

> February so I can have some healing time from my c-section.

>

> Needless to say I was very shocked by the news on friday and

> couldn't think of 1 question to ask. If anyone has any thoughts or

> questions that I should ask, please share. Is anyone aware of

other

> treatment options? Max does not qualify for stapling. We have a

few

> months to get all of the questions answered.

>

> I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> lower on his back (lumbar region), and his chest wall is not

> compromised, he would not recommend the VEPTER.

>

> Max will be exactly 2 1/2 at the time of surgery.

>

> Thank you,

>

> Aekta

>

>

>

>

>

>

> ---------------------------------

> Got a little couch potato?

> Check out fun summer activities for kids.

>

>

[Guest guest]

Hi Carmell,

Okay, the wheels in my brain are turning.

Why would one do a VEPTR when there is nothing wrong with his chest

wall/rib cage?

Also, will a VEPTR help with the 3 curves Max has? The curviest

curve is the lower one?

Can a VEPTR be done on a 2 1/2 year old?

Sorry for the questions.

When Max was scheduled in 08/2006 at UW MAdison for his surgery,

they also recommeneded the growing rod over the VEPTR. In 07/06, we

also went to Childrens Hospital in Milwaukee who also suggested

growing rod, but try to wait until Msx was older, either with a

brace or cast.

I'm still very confused as to how a VEPTR can benefit Max over the

growing rod when considering the curve and his age and no chest

wall/rib cage deformities? Everything I have read on the VEPTR

indicate Thoracic insufficiency syndrome and needing to expand the

chest wall.

Your thoughts and feedback are GREATLY appreciated!

Aekta

>

> Aetka,

>

> <<I did ask about the VEPTER. Dr. Sturm said since

> Max's curve is lower on his back (lumbar region), and

> his chest wall is not compromised, he would not

> recommend the VEPTER.>>

>

> I'm sorry to hear Max is not responding as well to

> casting as you'd hoped. I can imagine how frustrated

> you must feel. I wish I could say something that

> would be positive or encouraging. I just wanted to

> share a few things I know about growing rods -vs-

> VEPTR. Max is very young still. Having growing rods

> placed *could* stimulate bone growth that leads to a

> natural, premature, spontaneous fusion of the spine.

> The growing rods are placed along the spine. They are

> anchored at the top and bottom by screws into the

> vertebrae, and are fused into place. The area of

> spine between the rods is actually touching the rods

> (assuming Dr. Sturm is planning on dual growing rods,

> not just one growing rod). This area between the

> anchor points will stimulate bone growth because of

> the metal touching the spine. I've heard of several

> patients with early placement of growing rods who have

> had early spontaneous fusion of the spine. This is

> fusion. This prevents vertical growth of the spine

> during those critical teenage years.

>

> VEPTR rods have continued to evolve. There are

> several patients who have VEPTR rods placed on an

> upper rib behind the collarbone in the back, and

> attached to the pelvis on the bottom. They do not

> touch the spine at all. I can send you some photos of

> kids who have had these pelvic attachments (and

> 's Olivia has these also). Many of these

> pelvic VEPTR kids have lumbar curves, not thoracic

> curves. The original/initial design of the VEPTR was

> to support the chest in kids with chestwall

> deformities (even missing parts of the chestwall -

> very extreme cases). However, the newer designs of

> the VEPTR are for kids with a wider range of medical

> issues, including lumbar scoliosis.

>

> Another suggestion is to investigate the Shilla

> procedure. This is new to the USA, and looks

> promising. It is similar to the growing rods in that

> two rods are placed along the spine (anchored into

> place with screws and fusion) but the middle of the

> rods have sliding screws so the spine grows and the

> rods elongate with the natural growth of the spine.

> No need for expansion surgeries every 6 months. There

> is only 2 years of followup for some of these kids,

> but it does look promising for a select type of spine

> malformation/scoliosis. Dr. McCarthy in

> Little Rock AR developed this procedure. Dr. Lenke in

> MN is one of the surgeons doing studies on kids with

> Shilla. Dr. Skaggs in LA has done one or two Shillas,

> etc. Not much on the internet to research about

> Shilla.

>

> I don't mean to overload you with rambling. I just

> want you to make sure growing rods are the right

> procedure for Max. Maybe you have a similar attitude

> we had - try something that is least invasive first.

> If that doesn't work, you can try something else (or

> even revert back to traditional fusion, if nothing

> works). Fortunately for Braydon, VEPTR has been a

> blessing. His quality of life says it all.

>

> My best,

> Carmell

>

>

>

>

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17,

GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery

5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency

Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC

(released 4/99 & 12/06), anal stenosis, chronic constipation,

horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97),

neurogenic bladder, dysplastic right leg w/right clubfoot with 8

toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length

discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis,

SUA, etc. http://carmellb-ivil.tripod.com/myfamily/

>

> Congenital scoliosis support group

> http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

>

>

>

_____________________________________________________________________

_______________

> Check out the hottest 2008 models today at Yahoo! Autos.

> http://autos.yahoo.com/new_cars.html

>

[Guest guest]

Hi Carmell,

Okay, the wheels in my brain are turning.

Why would one do a VEPTR when there is nothing wrong with his chest

wall/rib cage?

Also, will a VEPTR help with the 3 curves Max has? The curviest

curve is the lower one?

Can a VEPTR be done on a 2 1/2 year old?

Sorry for the questions.

When Max was scheduled in 08/2006 at UW MAdison for his surgery,

they also recommeneded the growing rod over the VEPTR. In 07/06, we

also went to Childrens Hospital in Milwaukee who also suggested

growing rod, but try to wait until Msx was older, either with a

brace or cast.

I'm still very confused as to how a VEPTR can benefit Max over the

growing rod when considering the curve and his age and no chest

wall/rib cage deformities? Everything I have read on the VEPTR

indicate Thoracic insufficiency syndrome and needing to expand the

chest wall.

Your thoughts and feedback are GREATLY appreciated!

Aekta

>

> Aetka,

>

> <<I did ask about the VEPTER. Dr. Sturm said since

> Max's curve is lower on his back (lumbar region), and

> his chest wall is not compromised, he would not

> recommend the VEPTER.>>

>

> I'm sorry to hear Max is not responding as well to

> casting as you'd hoped. I can imagine how frustrated

> you must feel. I wish I could say something that

> would be positive or encouraging. I just wanted to

> share a few things I know about growing rods -vs-

> VEPTR. Max is very young still. Having growing rods

> placed *could* stimulate bone growth that leads to a

> natural, premature, spontaneous fusion of the spine.

> The growing rods are placed along the spine. They are

> anchored at the top and bottom by screws into the

> vertebrae, and are fused into place. The area of

> spine between the rods is actually touching the rods

> (assuming Dr. Sturm is planning on dual growing rods,

> not just one growing rod). This area between the

> anchor points will stimulate bone growth because of

> the metal touching the spine. I've heard of several

> patients with early placement of growing rods who have

> had early spontaneous fusion of the spine. This is

> fusion. This prevents vertical growth of the spine

> during those critical teenage years.

>

> VEPTR rods have continued to evolve. There are

> several patients who have VEPTR rods placed on an

> upper rib behind the collarbone in the back, and

> attached to the pelvis on the bottom. They do not

> touch the spine at all. I can send you some photos of

> kids who have had these pelvic attachments (and

> 's Olivia has these also). Many of these

> pelvic VEPTR kids have lumbar curves, not thoracic

> curves. The original/initial design of the VEPTR was

> to support the chest in kids with chestwall

> deformities (even missing parts of the chestwall -

> very extreme cases). However, the newer designs of

> the VEPTR are for kids with a wider range of medical

> issues, including lumbar scoliosis.

>

> Another suggestion is to investigate the Shilla

> procedure. This is new to the USA, and looks

> promising. It is similar to the growing rods in that

> two rods are placed along the spine (anchored into

> place with screws and fusion) but the middle of the

> rods have sliding screws so the spine grows and the

> rods elongate with the natural growth of the spine.

> No need for expansion surgeries every 6 months. There

> is only 2 years of followup for some of these kids,

> but it does look promising for a select type of spine

> malformation/scoliosis. Dr. McCarthy in

> Little Rock AR developed this procedure. Dr. Lenke in

> MN is one of the surgeons doing studies on kids with

> Shilla. Dr. Skaggs in LA has done one or two Shillas,

> etc. Not much on the internet to research about

> Shilla.

>

> I don't mean to overload you with rambling. I just

> want you to make sure growing rods are the right

> procedure for Max. Maybe you have a similar attitude

> we had - try something that is least invasive first.

> If that doesn't work, you can try something else (or

> even revert back to traditional fusion, if nothing

> works). Fortunately for Braydon, VEPTR has been a

> blessing. His quality of life says it all.

>

> My best,

> Carmell

>

>

>

>

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17,

GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery

5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency

Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC

(released 4/99 & 12/06), anal stenosis, chronic constipation,

horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97),

neurogenic bladder, dysplastic right leg w/right clubfoot with 8

toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length

discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis,

SUA, etc. http://carmellb-ivil.tripod.com/myfamily/

>

> Congenital scoliosis support group

> http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

>

>

>

_____________________________________________________________________

_______________

> Check out the hottest 2008 models today at Yahoo! Autos.

> http://autos.yahoo.com/new_cars.html

>

[Guest guest]

Hi Carmell,

Okay, the wheels in my brain are turning.

Why would one do a VEPTR when there is nothing wrong with his chest

wall/rib cage?

Also, will a VEPTR help with the 3 curves Max has? The curviest

curve is the lower one?

Can a VEPTR be done on a 2 1/2 year old?

Sorry for the questions.

When Max was scheduled in 08/2006 at UW MAdison for his surgery,

they also recommeneded the growing rod over the VEPTR. In 07/06, we

also went to Childrens Hospital in Milwaukee who also suggested

growing rod, but try to wait until Msx was older, either with a

brace or cast.

I'm still very confused as to how a VEPTR can benefit Max over the

growing rod when considering the curve and his age and no chest

wall/rib cage deformities? Everything I have read on the VEPTR

indicate Thoracic insufficiency syndrome and needing to expand the

chest wall.

Your thoughts and feedback are GREATLY appreciated!

Aekta

>

> Aetka,

>

> <<I did ask about the VEPTER. Dr. Sturm said since

> Max's curve is lower on his back (lumbar region), and

> his chest wall is not compromised, he would not

> recommend the VEPTER.>>

>

> I'm sorry to hear Max is not responding as well to

> casting as you'd hoped. I can imagine how frustrated

> you must feel. I wish I could say something that

> would be positive or encouraging. I just wanted to

> share a few things I know about growing rods -vs-

> VEPTR. Max is very young still. Having growing rods

> placed *could* stimulate bone growth that leads to a

> natural, premature, spontaneous fusion of the spine.

> The growing rods are placed along the spine. They are

> anchored at the top and bottom by screws into the

> vertebrae, and are fused into place. The area of

> spine between the rods is actually touching the rods

> (assuming Dr. Sturm is planning on dual growing rods,

> not just one growing rod). This area between the

> anchor points will stimulate bone growth because of

> the metal touching the spine. I've heard of several

> patients with early placement of growing rods who have

> had early spontaneous fusion of the spine. This is

> fusion. This prevents vertical growth of the spine

> during those critical teenage years.

>

> VEPTR rods have continued to evolve. There are

> several patients who have VEPTR rods placed on an

> upper rib behind the collarbone in the back, and

> attached to the pelvis on the bottom. They do not

> touch the spine at all. I can send you some photos of

> kids who have had these pelvic attachments (and

> 's Olivia has these also). Many of these

> pelvic VEPTR kids have lumbar curves, not thoracic

> curves. The original/initial design of the VEPTR was

> to support the chest in kids with chestwall

> deformities (even missing parts of the chestwall -

> very extreme cases). However, the newer designs of

> the VEPTR are for kids with a wider range of medical

> issues, including lumbar scoliosis.

>

> Another suggestion is to investigate the Shilla

> procedure. This is new to the USA, and looks

> promising. It is similar to the growing rods in that

> two rods are placed along the spine (anchored into

> place with screws and fusion) but the middle of the

> rods have sliding screws so the spine grows and the

> rods elongate with the natural growth of the spine.

> No need for expansion surgeries every 6 months. There

> is only 2 years of followup for some of these kids,

> but it does look promising for a select type of spine

> malformation/scoliosis. Dr. McCarthy in

> Little Rock AR developed this procedure. Dr. Lenke in

> MN is one of the surgeons doing studies on kids with

> Shilla. Dr. Skaggs in LA has done one or two Shillas,

> etc. Not much on the internet to research about

> Shilla.

>

> I don't mean to overload you with rambling. I just

> want you to make sure growing rods are the right

> procedure for Max. Maybe you have a similar attitude

> we had - try something that is least invasive first.

> If that doesn't work, you can try something else (or

> even revert back to traditional fusion, if nothing

> works). Fortunately for Braydon, VEPTR has been a

> blessing. His quality of life says it all.

>

> My best,

> Carmell

>

>

>

>

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17,

GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery

5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency

Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC

(released 4/99 & 12/06), anal stenosis, chronic constipation,

horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97),

neurogenic bladder, dysplastic right leg w/right clubfoot with 8

toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length

discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis,

SUA, etc. http://carmellb-ivil.tripod.com/myfamily/

>

> Congenital scoliosis support group

> http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

>

>

>

_____________________________________________________________________

_______________

> Check out the hottest 2008 models today at Yahoo! Autos.

> http://autos.yahoo.com/new_cars.html

>

[Guest guest]

I'm so glad that the doctors have mentioned connective tissue

disorders - I never like to alarm parents, coz I'm honestly no doctor

myself - But connective tissue disorders play a huge role in casts

not working on kids in the long term.

I see you've gotten lots of help from parents, like myself that are

now VEPTR fans! But the biggest thing to me, is that Siobhan's major

curve was and is LUMBAR (50 degrees)- Her thoracic curve was in the

30's (very manageable) and she wasn't having any breathing nor chest

issues - But our Dr at Shriners, SLC, sent us for a second opinion to

Dr J at Primary (SLC) as he knew that is one of the most

experienced VEPTR docs in The States.

Siobhan had 2 rib to pelvis devices placed and her lumbar curve went

from 50 down to 12 degrees!!!!!! The Marfan Syndrome comes with a

super flexible spine.

When she is due an expansion, the curves start increasing, but so

far, we haven't gotten past the early 20's.

Now to see her you'd never even know she had scoliosis

If you want to email me off list, re Marfans and scoliosis my email

is: jabostock@...

Good luck, and keep doing your research.

Jacki

> > >

> > > Max had his post-op on friday from his cast Miss Mehta placed

on

> > > 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

> > >

> > > Not good news at all. Max's curve is at the highest ever.

> > >

> > > On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

> > Miss

> > > Mehta placed his cast and the curve was reduced to 46 degrees.

> > >

> > > Friday's in cast x-ray showed Max's curve at 66 degrees.

> Basically

> > > this cast also did not hold Max's curve.

> > >

> > > Dr. Sturm told us after 1 full year of casting every 8 weeks,

> the

> > > curve is still progressing. His recommendation is growing rod

> > > surgery right after the first of the year. So Max will have

more

> 2

> > > casts. Max is scheduled 10/9/07 for his next cast change.

> > >

> > > We knew this day was coming, but we were hopeful to buy a

couple

> > > more years. We are grateful to have had casting as an option

as

> we

> > > were able to prolong surgery for 1 1/2 years.

> > >

> > > To make everything more challenging, I am scheduled for my c-

> > section

> > > on 12/31/07. So the first 2 months of 2008 will be very

> > interesting

> > > and challenging. Cree (Dr. Sturm's nurse) is going to

talk

> to

> > > Dr. Sturm and see if we can schedule surgery late January/early

> > > February so I can have some healing time from my c-section.

> > >

> > > Needless to say I was very shocked by the news on friday and

> > > couldn't think of 1 question to ask. If anyone has any

thoughts

> or

> > > questions that I should ask, please share. Is anyone aware of

> other

> > > treatment options? Max does not qualify for stapling. We have

a

> > few

> > > months to get all of the questions answered.

> > >

> > > I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> > > lower on his back (lumbar region), and his chest wall is not

> > > compromised, he would not recommend the VEPTER.

> > >

> > > Max will be exactly 2 1/2 at the time of surgery.

> > >

> > > Thank you,

> > >

> > > Aekta

> > >

> >

>

[Guest guest]

I'm so glad that the doctors have mentioned connective tissue

disorders - I never like to alarm parents, coz I'm honestly no doctor

myself - But connective tissue disorders play a huge role in casts

not working on kids in the long term.

I see you've gotten lots of help from parents, like myself that are

now VEPTR fans! But the biggest thing to me, is that Siobhan's major

curve was and is LUMBAR (50 degrees)- Her thoracic curve was in the

30's (very manageable) and she wasn't having any breathing nor chest

issues - But our Dr at Shriners, SLC, sent us for a second opinion to

Dr J at Primary (SLC) as he knew that is one of the most

experienced VEPTR docs in The States.

Siobhan had 2 rib to pelvis devices placed and her lumbar curve went

from 50 down to 12 degrees!!!!!! The Marfan Syndrome comes with a

super flexible spine.

When she is due an expansion, the curves start increasing, but so

far, we haven't gotten past the early 20's.

Now to see her you'd never even know she had scoliosis

If you want to email me off list, re Marfans and scoliosis my email

is: jabostock@...

Good luck, and keep doing your research.

Jacki

> > >

> > > Max had his post-op on friday from his cast Miss Mehta placed

on

> > > 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

> > >

> > > Not good news at all. Max's curve is at the highest ever.

> > >

> > > On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

> > Miss

> > > Mehta placed his cast and the curve was reduced to 46 degrees.

> > >

> > > Friday's in cast x-ray showed Max's curve at 66 degrees.

> Basically

> > > this cast also did not hold Max's curve.

> > >

> > > Dr. Sturm told us after 1 full year of casting every 8 weeks,

> the

> > > curve is still progressing. His recommendation is growing rod

> > > surgery right after the first of the year. So Max will have

more

> 2

> > > casts. Max is scheduled 10/9/07 for his next cast change.

> > >

> > > We knew this day was coming, but we were hopeful to buy a

couple

> > > more years. We are grateful to have had casting as an option

as

> we

> > > were able to prolong surgery for 1 1/2 years.

> > >

> > > To make everything more challenging, I am scheduled for my c-

> > section

> > > on 12/31/07. So the first 2 months of 2008 will be very

> > interesting

> > > and challenging. Cree (Dr. Sturm's nurse) is going to

talk

> to

> > > Dr. Sturm and see if we can schedule surgery late January/early

> > > February so I can have some healing time from my c-section.

> > >

> > > Needless to say I was very shocked by the news on friday and

> > > couldn't think of 1 question to ask. If anyone has any

thoughts

> or

> > > questions that I should ask, please share. Is anyone aware of

> other

> > > treatment options? Max does not qualify for stapling. We have

a

> > few

> > > months to get all of the questions answered.

> > >

> > > I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> > > lower on his back (lumbar region), and his chest wall is not

> > > compromised, he would not recommend the VEPTER.

> > >

> > > Max will be exactly 2 1/2 at the time of surgery.

> > >

> > > Thank you,

> > >

> > > Aekta

> > >

> >

>

[Guest guest]

I'm so glad that the doctors have mentioned connective tissue

disorders - I never like to alarm parents, coz I'm honestly no doctor

myself - But connective tissue disorders play a huge role in casts

not working on kids in the long term.

I see you've gotten lots of help from parents, like myself that are

now VEPTR fans! But the biggest thing to me, is that Siobhan's major

curve was and is LUMBAR (50 degrees)- Her thoracic curve was in the

30's (very manageable) and she wasn't having any breathing nor chest

issues - But our Dr at Shriners, SLC, sent us for a second opinion to

Dr J at Primary (SLC) as he knew that is one of the most

experienced VEPTR docs in The States.

Siobhan had 2 rib to pelvis devices placed and her lumbar curve went

from 50 down to 12 degrees!!!!!! The Marfan Syndrome comes with a

super flexible spine.

When she is due an expansion, the curves start increasing, but so

far, we haven't gotten past the early 20's.

Now to see her you'd never even know she had scoliosis

If you want to email me off list, re Marfans and scoliosis my email

is: jabostock@...

Good luck, and keep doing your research.

Jacki

> > >

> > > Max had his post-op on friday from his cast Miss Mehta placed

on

> > > 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

> > >

> > > Not good news at all. Max's curve is at the highest ever.

> > >

> > > On 8/8/07 after 6 casts...his curve was 80 degrees out of cast.

> > Miss

> > > Mehta placed his cast and the curve was reduced to 46 degrees.

> > >

> > > Friday's in cast x-ray showed Max's curve at 66 degrees.

> Basically

> > > this cast also did not hold Max's curve.

> > >

> > > Dr. Sturm told us after 1 full year of casting every 8 weeks,

> the

> > > curve is still progressing. His recommendation is growing rod

> > > surgery right after the first of the year. So Max will have

more

> 2

> > > casts. Max is scheduled 10/9/07 for his next cast change.

> > >

> > > We knew this day was coming, but we were hopeful to buy a

couple

> > > more years. We are grateful to have had casting as an option

as

> we

> > > were able to prolong surgery for 1 1/2 years.

> > >

> > > To make everything more challenging, I am scheduled for my c-

> > section

> > > on 12/31/07. So the first 2 months of 2008 will be very

> > interesting

> > > and challenging. Cree (Dr. Sturm's nurse) is going to

talk

> to

> > > Dr. Sturm and see if we can schedule surgery late January/early

> > > February so I can have some healing time from my c-section.

> > >

> > > Needless to say I was very shocked by the news on friday and

> > > couldn't think of 1 question to ask. If anyone has any

thoughts

> or

> > > questions that I should ask, please share. Is anyone aware of

> other

> > > treatment options? Max does not qualify for stapling. We have

a

> > few

> > > months to get all of the questions answered.

> > >

> > > I did ask about the VEPTER. Dr. Sturm said since Max's curve is

> > > lower on his back (lumbar region), and his chest wall is not

> > > compromised, he would not recommend the VEPTER.

> > >

> > > Max will be exactly 2 1/2 at the time of surgery.

> > >

> > > Thank you,

> > >

> > > Aekta

> > >

> >

>

[Guest guest]

Aekta:

I am so sorry to hear that the surgery will be coming so soon. At least you

know that you have been doing all that you can. I will keep your family in my

prayers!

________________________________

From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of babymaxpd

Sent: Sunday, September 23, 2007 6:10 PM

To: infantile_scoliosis

Subject: Max: Surgery

Max had his post-op on friday from his cast Miss Mehta placed on

8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

Not good news at all. Max's curve is at the highest ever.

On 8/8/07 after 6 casts...his curve was 80 degrees out of cast. Miss

Mehta placed his cast and the curve was reduced to 46 degrees.

Friday's in cast x-ray showed Max's curve at 66 degrees. Basically

this cast also did not hold Max's curve.

Dr. Sturm told us after 1 full year of casting every 8 weeks, the

curve is still progressing. His recommendation is growing rod

surgery right after the first of the year. So Max will have more 2

casts. Max is scheduled 10/9/07 for his next cast change.

We knew this day was coming, but we were hopeful to buy a couple

more years. We are grateful to have had casting as an option as we

were able to prolong surgery for 1 1/2 years.

To make everything more challenging, I am scheduled for my c-section

on 12/31/07. So the first 2 months of 2008 will be very interesting

and challenging. Cree (Dr. Sturm's nurse) is going to talk to

Dr. Sturm and see if we can schedule surgery late January/early

February so I can have some healing time from my c-section.

Needless to say I was very shocked by the news on friday and

couldn't think of 1 question to ask. If anyone has any thoughts or

questions that I should ask, please share. Is anyone aware of other

treatment options? Max does not qualify for stapling. We have a few

months to get all of the questions answered.

I did ask about the VEPTER. Dr. Sturm said since Max's curve is

lower on his back (lumbar region), and his chest wall is not

compromised, he would not recommend the VEPTER.

Max will be exactly 2 1/2 at the time of surgery.

Thank you,

Aekta

[Guest guest]

Aekta:

I am so sorry to hear that the surgery will be coming so soon. At least you

know that you have been doing all that you can. I will keep your family in my

prayers!

________________________________

From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of babymaxpd

Sent: Sunday, September 23, 2007 6:10 PM

To: infantile_scoliosis

Subject: Max: Surgery

Max had his post-op on friday from his cast Miss Mehta placed on

8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP.

Not good news at all. Max's curve is at the highest ever.

On 8/8/07 after 6 casts...his curve was 80 degrees out of cast. Miss

Mehta placed his cast and the curve was reduced to 46 degrees.

Friday's in cast x-ray showed Max's curve at 66 degrees. Basically

this cast also did not hold Max's curve.

Dr. Sturm told us after 1 full year of casting every 8 weeks, the

curve is still progressing. His recommendation is growing rod

surgery right after the first of the year. So Max will have more 2

casts. Max is scheduled 10/9/07 for his next cast change.

We knew this day was coming, but we were hopeful to buy a couple

more years. We are grateful to have had casting as an option as we

were able to prolong surgery for 1 1/2 years.

To make everything more challenging, I am scheduled for my c-section

on 12/31/07. So the first 2 months of 2008 will be very interesting

and challenging. Cree (Dr. Sturm's nurse) is going to talk to

Dr. Sturm and see if we can schedule surgery late January/early

February so I can have some healing time from my c-section.

Needless to say I was very shocked by the news on friday and

couldn't think of 1 question to ask. If anyone has any thoughts or

questions that I should ask, please share. Is anyone aware of other

treatment options? Max does not qualify for stapling. We have a few

months to get all of the questions answered.

I did ask about the VEPTER. Dr. Sturm said since Max's curve is

lower on his back (lumbar region), and his chest wall is not

compromised, he would not recommend the VEPTER.

Max will be exactly 2 1/2 at the time of surgery.

Thank you,

Aekta

[Guest guest]

Sandy,

Thank you very much for the information.

A big part of me wants to know if Dr. Sturm would consider consulting

with Dr. Lenke. But, a bigger part wants to find out if Dr. Lenke

will review Max's records and x-rays without an appointment.

I will have to review more of the websites you have provided.

Why wouldn't Dr. Lenke be interested in learning to cast for Jack?

Thanks,

Aekta

>

> Aekta,

> I wanted to pass along Dr. Lenke's website.

> http://www.spinal-deformity-surgeon.com

>

> Also, you can read about some of the methods here, as well as the

surgeons:

> http://www.scoliosis.org/forum/index.php?

>

> (Which you probably already know)

>

> If/when Jack should ever need surgery, I'd be in Dr. Lenke's hands

> again, for sure. I love Dr. Sturm and he's great. But, even Dr.

> Sturm sounded as if he trusts Dr. Lenke's experienced beyond his

own.

>

> Much love again on this difficult night,

> Sandi

>

[Guest guest]

Sandy,

Thank you very much for the information.

A big part of me wants to know if Dr. Sturm would consider consulting

with Dr. Lenke. But, a bigger part wants to find out if Dr. Lenke

will review Max's records and x-rays without an appointment.

I will have to review more of the websites you have provided.

Why wouldn't Dr. Lenke be interested in learning to cast for Jack?

Thanks,

Aekta

>

> Aekta,

> I wanted to pass along Dr. Lenke's website.

> http://www.spinal-deformity-surgeon.com

>

> Also, you can read about some of the methods here, as well as the

surgeons:

> http://www.scoliosis.org/forum/index.php?

>

> (Which you probably already know)

>

> If/when Jack should ever need surgery, I'd be in Dr. Lenke's hands

> again, for sure. I love Dr. Sturm and he's great. But, even Dr.

> Sturm sounded as if he trusts Dr. Lenke's experienced beyond his

own.

>

> Much love again on this difficult night,

> Sandi

>

[Guest guest]

Sandy,

Thank you very much for the information.

A big part of me wants to know if Dr. Sturm would consider consulting

with Dr. Lenke. But, a bigger part wants to find out if Dr. Lenke

will review Max's records and x-rays without an appointment.

I will have to review more of the websites you have provided.

Why wouldn't Dr. Lenke be interested in learning to cast for Jack?

Thanks,

Aekta

>

> Aekta,

> I wanted to pass along Dr. Lenke's website.

> http://www.spinal-deformity-surgeon.com

>

> Also, you can read about some of the methods here, as well as the

surgeons:

> http://www.scoliosis.org/forum/index.php?

>

> (Which you probably already know)

>

> If/when Jack should ever need surgery, I'd be in Dr. Lenke's hands

> again, for sure. I love Dr. Sturm and he's great. But, even Dr.

> Sturm sounded as if he trusts Dr. Lenke's experienced beyond his

own.

>

> Much love again on this difficult night,

> Sandi

>