Re: Please help! Just learned that my one-year-old will need spinal fusion surgery.

January 4, 2006

I truly can't offer any advice but just my thoughts and prayers. My son Evan is 4mos old and going back for a 2nd opinion tomorrow to see if his curve has progressed from 33degrees- We have sent information to Shriners and that will be our next step. Good luck and I hope some of these awesome ladies will help you out w/what you need to ask and research-They have truly helped me Evan 8/7/05 Sinanis <kelpaulton@...> wrote: So, it turns out that 's curve got worse from his first x-ray back at the end of August. It is now 35 degrees and then it was 30. He has a unilateral bar from T8-T12. The ortho wants to do surgery. He's done spinal surgery on over 100 1-2 year olds. He has done other types of surgery on babies as young

as 2 months old. He has been treating our son since last February for a right clubfoot. He is the chief of pediatric orthopedic surgery at NYU and has been voted as one of New York's best doctors in New York Magazine for many many years. We will definitely seek other opinions, but I think I would trust him to do the surgery. His name is Feldman. We will probably also go see Dr. Boachie or Dr. Widmann. Any advice, any questions I should ask, ANYTHING would be greatly appreciated. I'm at a loss just thinking about everything. The surgery itself, the anesthesia, whahe will be able to eat/not eat, how he will sleep, sit, how the cast will be, how the brace will be, etc. He's already wearing a brace every night for his foot (he was born with a right clubfoot). Fun times. He's such a little sweetie pie and I know this whole ordeal will be very trying and I hope and pray that all will go well

and that he won't need anything beyond this..... __________________________________________________

January 4, 2006

wow! surgery seems so extreme at such a young age. our daughter, lexi is 2 and had a 35o curve this same time last year and we casted her in august for the first time. as of now, she is 13o in cast. i would seek other options as fusion surgery seems so extreme to me at such a young age. i would love to post more right now, but am in a time crunch. i am sure more mothers on here will give you their stories.

tracey

Please help! Just learned that my one-year-old will need spinal fusion surgery.

So, it turns out that 's curve got worse from his first x-ray back at the end of August. It is now 35 degrees and then it was 30. He has a unilateral bar from T8-T12. The ortho wants to do surgery. He's done spinal surgery on over 100 1-2 year olds. He has done other types of surgery on babies as young as 2 months old. He has been treating our son since last February for a right clubfoot. He is the chief of pediatric orthopedic surgery at NYU and has been voted as one of New York's best doctors in New York Magazine for many many years. We will definitely seek other opinions, but I think I would trust him to do the surgery. His name is Feldman. We will probably also go see Dr. Boachie or Dr. Widmann.

Any advice, any questions I should ask, ANYTHING would be greatly appreciated. I'm at a loss just thinking about everything. The surgery itself, the anesthesia, whahe will be able to eat/not eat, how he will sleep, sit, how the cast will be, how the brace will be, etc. He's already wearing a brace every night for his foot (he was born with a right clubfoot). Fun times. He's such a little sweetie pie and I know this whole ordeal will be very trying and I hope and pray that all will go well and that he won't need anything beyond this.....

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January 4, 2006

,

What is a unilateral bar from T8-T12? This is not something I have heard, and may be a congenital reason that he wants to do surgery. Otherwise I agree that surgery at that degree and age seems very drastic.

E

From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of TraceySent: Wednesday, January 04, 2006 12:53 PMinfantile scoliosis treatment Subject: Re: Please help! Just learned that my one-year-old will need spinal fusion surgery.

wow! surgery seems so extreme at such a young age. our daughter, lexi is 2 and had a 35o curve this same time last year and we casted her in august for the first time. as of now, she is 13o in cast. i would seek other options as fusion surgery seems so extreme to me at such a young age. i would love to post more right now, but am in a time crunch. i am sure more mothers on here will give you their stories.

tracey

Please help! Just learned that my one-year-old will need spinal fusion surgery.

So, it turns out that 's curve got worse from his first x-ray back at the end of August. It is now 35 degrees and then it was 30. He has a unilateral bar from T8-T12. The ortho wants to do surgery. He's done spinal surgery on over 100 1-2 year olds. He has done other types of surgery on babies as young as 2 months old. He has been treating our son since last February for a right clubfoot. He is the chief of pediatric orthopedic surgery at NYU and has been voted as one of New York's best doctors in New York Magazine for many many years. We will definitely seek other opinions, but I think I would trust him to do the surgery. His name is Feldman. We will probably also go see Dr. Boachie or Dr. Widmann.

Any advice, any questions I should ask, ANYTHING would be greatly appreciated. I'm at a loss just thinking about everything. The surgery itself, the anesthesia, whahe will be able to eat/not eat, how he will sleep, sit, how the cast will be, how the brace will be, etc. He's already wearing a brace every night for his foot (he was born with a right clubfoot). Fun times. He's such a little sweetie pie and I know this whole ordeal will be very trying and I hope and pray that all will go well and that he won't need anything beyond this.....

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January 4, 2006

Is he congenital and that is why they are doing surgery? I don't know a lot about congenital scoli, but recommend you look into the VEPTR procedure vs. the fusion. Carmell and Shellie would be the ones to talk to about VEPTR. I know there is a VEPTR message board that they can probably provide the link for.

Noelle (12-2-01)Ian (8-15-04)

Please help! Just learned that my one-year-old will need spinal fusion surgery.

So, it turns out that 's curve got worse from his first x-ray back at the end of August. It is now 35 degrees and then it was 30. He has a unilateral bar from T8-T12. The ortho wants to do surgery. He's done spinal surgery on over 100 1-2 year olds. He has done other types of surgery on babies as young as 2 months old. He has been treating our son since last February for a right clubfoot. He is the chief of pediatric orthopedic surgery at NYU and has been voted as one of New York's best doctors in New York Magazine for many many years. We will definitely seek other opinions, but I think I would trust him to do the surgery. His name is Feldman. We will probably also go see Dr. Boachie or Dr. Widmann.

Any advice, any questions I should ask, ANYTHING would be greatly appreciated. I'm at a loss just thinking about everything. The surgery itself, the anesthesia, whahe will be able to eat/not eat, how he will sleep, sit, how the cast will be, how the brace will be, etc. He's already wearing a brace every night for his foot (he was born with a right clubfoot). Fun times. He's such a little sweetie pie and I know this whole ordeal will be very trying and I hope and pray that all will go well and that he won't need anything beyond this.....

__________________________________________________

January 4, 2006

Hi ,

<<He has a unilateral bar from T8-T12. The ortho

wants to do surgery.>>

My son had spinal fusion surgery at age 11 months old.

He is fused from T5-L1. 's congenital anomalies

are in a similar area as Braydon's. He would have the

vertebrae just above and just below the anomolous

verts fused for stability. That means they would fuse

from T7-L1. This is a HUGE part of the thoracic

spine. PLEASE consider getting another opinion. The

orthos at NYU are wonderful for adolescent and adult

scoliosis patients, especially those who need revision

surgery after failed previous procedures. However,

they are NOT up-to-date on the latest NON-fusion

procedures for infants and toddlers.

Braydon's thoracic spine is very rigid and fused

solid. It does not grow vertically. His trunk/body

is disproportionately shorter than his limbs are long.

The fusion stops all vertical growth of that part of

the spine. It grows in thickness, but not vertically.

Braydon's height is already 4 inches shorter than it

should be, because of the fusion. He is only 10yrs

old and has a lot more growth ahead of him. The

disproportionate trunk and limbs will continue to

increase.

A 35 degree curve is not an emergency. You have time

to find other opinions and gather more information to

give the best medical care possible. Fusion may

be the right thing for him, but you want to be 100%

certain. You can never UN-DO a fusion.

Had the VEPTR procedure been perfected when Braydon

was an infant, he would have been able to avoid some,

if not all, fusion of his spine. The VEPTR procedure

Braydon had done at age 6yrs has given his lungs more

room to function and has stabilized the spine.

If I were you, I would get another opinion from docs

like Dr. Betz at Shriners in Philly, Dr. Emans in

Boston, Dr. Crawford in Cincinnati, etc. Then, I

would go back to Dr. Feldman and ask him what the

outcome has been of the patients he fused as

infants/toddlers. How many have long term compromised

lung function? How many have disproportionately short

trunks? How many have had more fusion surgeries later

in life (due to the instability of the entire spine,

if applicable)?

Hopefully you will find the right plan that you are

100% confident with for .

My best!

Carmell

mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL,

GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic

insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96),

missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single

umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

http://carmellb-ivil.tripod.com/myfamily/

__________________________________________

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January 4, 2006

I agree with Tracey...they usually try to avoid surgery this young esp. the fusion surgery because where they fuse the bone it actually stunts their growth. As I said, there are others on this board far more knowledgeable about that than me.

The key is to find out if she is congenital verses idiopathic. If she is idiopathic, there are other alternatives to surgery.

Noelle (12-2-01)Ian (8-15-04)

Please help! Just learned that my one-year-old will need spinal fusion surgery.

So, it turns out that 's curve got worse from his first x-ray back at the end of August. It is now 35 degrees and then it was 30. He has a unilateral bar from T8-T12. The ortho wants to do surgery. He's done spinal surgery on over 100 1-2 year olds. He has done other types of surgery on babies as young as 2 months old. He has been treating our son since last February for a right clubfoot. He is the chief of pediatric orthopedic surgery at NYU and has been voted as one of New York's best doctors in New York Magazine for many many years. We will definitely seek other opinions, but I think I would trust him to do the surgery. His name is Feldman. We will probably also go see Dr. Boachie or Dr. Widmann.

Any advice, any questions I should ask, ANYTHING would be greatly appreciated. I'm at a loss just thinking about everything. The surgery itself, the anesthesia, whahe will be able to eat/not eat, how he will sleep, sit, how the cast will be, how the brace will be, etc. He's already wearing a brace every night for his foot (he was born with a right clubfoot). Fun times. He's such a little sweetie pie and I know this whole ordeal will be very trying and I hope and pray that all will go well and that he won't need anything beyond this.....

__________________________________________________

January 4, 2006

Hi again, ,

<<He's already wearing a brace every night for his

foot (he was born with a right clubfoot).>>

Braydon also was born with a right clubfoot. By age

3yrs old, his right leg was shorter than the left leg.

Once we were able to have the VEPTR surgery and

stabilize the spine (including giving his body better

overall balance, etc.) we were able to put a lift in

his shoe to allow him to walk without a limp. There

are so many things that play a part in the decision to

have major surgery. I'm just a little worried that

the docs aren't considering the future for .

Fusion now would stop the progression, but would cause

a domino-effect of problems later. Let me know what

they say, and how things are going.