Re: Max: Surgery

[Guest guest]

Oh, Aekta. My heart just goes out to you so much right now. I know

how crushing this is, no matter how much someone " knows " it may be a

possibility.

Please, email any time - let me know if there is anything, at all, I can do.

Much, much love

Sandi

[Guest guest]

Oh, Aekta. My heart just goes out to you so much right now. I know

how crushing this is, no matter how much someone " knows " it may be a

possibility.

Please, email any time - let me know if there is anything, at all, I can do.

Much, much love

Sandi

[Guest guest]

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]

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]

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]

Aekta,

I am sorry to hear about Max needing surgery.

I wish I had some questions for you to ask or the right thing to say, but I did

want you to know I am thinking about all of you.

I am sure some of the other Moms with surgery experience will chime in soon with

some great advice/questions for Dr. Strum.

I will keep you all in my prayers.

Keep us posted.

Take care,

Tasha

babymaxpd wrote: 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]

Aekta,

I am sorry to hear about Max needing surgery.

I wish I had some questions for you to ask or the right thing to say, but I did

want you to know I am thinking about all of you.

I am sure some of the other Moms with surgery experience will chime in soon with

some great advice/questions for Dr. Strum.

I will keep you all in my prayers.

Keep us posted.

Take care,

Tasha

babymaxpd wrote: 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]

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]

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]

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]

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]

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 Aekta

I'm so sorry to hear that Max didn't respond to casting as you'd

hoped - Not all kids do unfortunately. Did the doctors have any

suggestions on why he didn't respond - like an underlying issue? My

daughter was diagnosed at 12 months with some kind of " connective

tissus disorder " (it was later confirmed as Marfan Syndrome). We knew

all along that casting wouldn't " cure " her - But it did buy her some

time for us to research other options.

My daughter received VEPTR implants at 6 yrs old - She had 2 braces

and 4 casts, in 3 years, and her curves continued to progress.

I find it interesting that your Ortho said that Max wouldn't be a

candidate for VEPTR as he has a lumbar curve, and his lungs aren't

compromised - As Siobhan's major curve is lumbar - Is there any way

you could get a 2nd opinion? Surgery is a massive decision, made

harder by the fact that Max is so little.... But if you can get him

to a doctor that has done many VEPTR and/ or growth rods, you'll know

in your heart that the best decision has been made.

For us, we liked the fact that the VEPTR rods don't touch the spine -

For my little girl, they literally act as an 'internal brace' -

holding her spine straight.

(She'd doing wonderfully!).

Anyway, I couldn't read your post without adding my 2 cents LOL.

Please know that our thoughts are with you - Such a difficult time.

Hugs

Jacki, mum to Siobhan aged 8 yrs old.

Vancouver, Canada

>

> 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,

Oh how sorry I am. You have been such a support to so

many on this site and I just wish I could say

something to help you. Know that we are all pulling

for you and Max.

Jill

--- babymaxpd wrote:

> 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]

Aekta,

Oh how sorry I am. You have been such a support to so

many on this site and I just wish I could say

something to help you. Know that we are all pulling

for you and Max.

Jill

--- babymaxpd wrote:

> 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]

Aekta,

Oh how sorry I am. You have been such a support to so

many on this site and I just wish I could say

something to help you. Know that we are all pulling

for you and Max.

Jill

--- babymaxpd wrote:

> 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]

Hello. My son's curve also continued to progress with the casting and needed to

have growing rods. He stayed in the hospital about 5 days with the first

growing rod insertion, then with the lengthings every six months he only stayed

overnight. He was glad to be without the cast. My thoughts and prayers are

with you and your little one. 's mom

jill wienke wrote: Aekta,

Oh how sorry I am. You have been such a support to so

many on this site and I just wish I could say

something to help you. Know that we are all pulling

for you and Max.

Jill

--- babymaxpd wrote:

> 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

---------------------------------

Shape Yahoo! in your own image. Join our Network Research Panel today!

[Guest guest]

Hello. My son's curve also continued to progress with the casting and needed to

have growing rods. He stayed in the hospital about 5 days with the first

growing rod insertion, then with the lengthings every six months he only stayed

overnight. He was glad to be without the cast. My thoughts and prayers are

with you and your little one. 's mom

jill wienke wrote: Aekta,

Oh how sorry I am. You have been such a support to so

many on this site and I just wish I could say

something to help you. Know that we are all pulling

for you and Max.

Jill

--- babymaxpd wrote:

> 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

---------------------------------

Shape Yahoo! in your own image. Join our Network Research Panel today!

[Guest guest]

Hang in there! I am fairly new to this sight and wanted to let you know about

. She never got casting b/c it would be a waste of time. She did have the

growing rods but failed due to soft bone and not enough skin. is now 100

degrees and her curve in her lower back... She is getting the VEPTR on October

25th and we are hoping and praying this is her ticket! Make sure you weigh out

all of your options for Max, get lots of opinions and go with your gut feeling.

I will keep Max in my prayers. Good luck on the C-section. I know how hard

they can be but you will get through it. Also, in such hardships, I always say

" let go, let God. "

babymaxpd wrote: 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 Sandi,

Thank you for your thoughts and wishes. I hope all goes well with

Jack this week. I will be thinking of him. Please kee us posted.

Aekta

>

> Oh, Aekta. My heart just goes out to you so much right now. I

know

> how crushing this is, no matter how much someone " knows " it may be

a

> possibility.

>

> Please, email any time - let me know if there is anything, at all,

I can do.

> Much, much love

> Sandi

>

[Guest guest]

Hi Sandi,

Thank you for your thoughts and wishes. I hope all goes well with

Jack this week. I will be thinking of him. Please kee us posted.

Aekta

>

> Oh, Aekta. My heart just goes out to you so much right now. I

know

> how crushing this is, no matter how much someone " knows " it may be

a

> possibility.

>

> Please, email any time - let me know if there is anything, at all,

I can do.

> Much, much love

> Sandi

>

[Guest guest]

Hi Sandi,

Thank you for your thoughts and wishes. I hope all goes well with

Jack this week. I will be thinking of him. Please kee us posted.

Aekta

>

> Oh, Aekta. My heart just goes out to you so much right now. I

know

> how crushing this is, no matter how much someone " knows " it may be

a

> possibility.

>

> Please, email any time - let me know if there is anything, at all,

I can do.

> Much, much love

> Sandi

>

[Guest guest]

Carmell,

Thank you very much for then information. I will hawv to go more in

depth with Dr. Sturm about why he isn't selecting the VEPTER. Yes,

he is planning to do the dual rods.

If you can please send me photos of other children with pelvic

attachements, it would help me termendously visualize.

I have never heard of the Shillas procedure. I will have to ask Dr.

Sturm about this also. I would love to get feedback from Dr. Lenke

in St. Louis. Perhaps Dr. Sturm would be willing to consult with Dr.

Lenke on this.

Dr. Sturm did mention he is particiapting in astudy with VEPTERs. I

know he has done VEPTERs and is doing a study on VEPTERs with other

docs. I, therefore, assumed he would recommend the best for Max.

My biggest thought is age. Does age play a factor on what surgery is

best for children at certain ages for surgery?

I want to do what is less inavasive first which is why we didn't

settle for surgery when Max was 13 months at UW Madison.

i have a ton of questions, but my emotions are gettignthe best of me

these past couple of days that I can't think straight. Can we talk

over the phone sometime? I'll e-mail you my phone number.

I appreciate your feedback and information.

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]

Carmell,

Thank you very much for then information. I will hawv to go more in

depth with Dr. Sturm about why he isn't selecting the VEPTER. Yes,

he is planning to do the dual rods.

If you can please send me photos of other children with pelvic

attachements, it would help me termendously visualize.

I have never heard of the Shillas procedure. I will have to ask Dr.

Sturm about this also. I would love to get feedback from Dr. Lenke

in St. Louis. Perhaps Dr. Sturm would be willing to consult with Dr.

Lenke on this.

Dr. Sturm did mention he is particiapting in astudy with VEPTERs. I

know he has done VEPTERs and is doing a study on VEPTERs with other

docs. I, therefore, assumed he would recommend the best for Max.

My biggest thought is age. Does age play a factor on what surgery is

best for children at certain ages for surgery?

I want to do what is less inavasive first which is why we didn't

settle for surgery when Max was 13 months at UW Madison.

i have a ton of questions, but my emotions are gettignthe best of me

these past couple of days that I can't think straight. Can we talk

over the phone sometime? I'll e-mail you my phone number.

I appreciate your feedback and information.

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]

Carmell,

Thank you very much for then information. I will hawv to go more in

depth with Dr. Sturm about why he isn't selecting the VEPTER. Yes,

he is planning to do the dual rods.

If you can please send me photos of other children with pelvic

attachements, it would help me termendously visualize.

I have never heard of the Shillas procedure. I will have to ask Dr.

Sturm about this also. I would love to get feedback from Dr. Lenke

in St. Louis. Perhaps Dr. Sturm would be willing to consult with Dr.

Lenke on this.

Dr. Sturm did mention he is particiapting in astudy with VEPTERs. I

know he has done VEPTERs and is doing a study on VEPTERs with other

docs. I, therefore, assumed he would recommend the best for Max.

My biggest thought is age. Does age play a factor on what surgery is

best for children at certain ages for surgery?

I want to do what is less inavasive first which is why we didn't

settle for surgery when Max was 13 months at UW Madison.

i have a ton of questions, but my emotions are gettignthe best of me

these past couple of days that I can't think straight. Can we talk

over the phone sometime? I'll e-mail you my phone number.

I appreciate your feedback and information.

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

>