's Second Opinion Appt. regarding spinal fusion

[Guest guest]

Okay, so on Friday we went to see Dr. Widmann at the Hospital for Special Surgery. He basically said that in the case of a unilateral bar, spinal fusion surgery would be unavoidable. He didn't seem to think the curve was so severe to rush into surgery. He thinks that the fusion wouldn't TAKE well now that there is still cartilage in the spine, especially with just bone graft. He would want to wait until is at least 2, and monitor the curve closely with x-rays in the meantime every 2-2.5 months. He said that he would do the fusion WITH baby-sized instrumentation. He would have him in a body cast 4-6 months, with no bracing necessary afterwards. He did not give us any idea about whether this surgery would compromise his pulmonary function in the future. He said that it's better to have a shorter fusion now that is on the younger side, than needing a longer fusion later. He also said

that 's growth is already stunted since 5 of his vertebrae are fused together on one side, so we wouldn't be stunting his growth any more than it already IS. Which makes sense. That side is not growing at all. The left side will continue to grow and he will continue to grow crooked. Soooooooo, now what do we do? I think we should see one more doc here in NYC, perhaps at Columbia (Vitale or Hyman sound familiar to anyone?) and then possibly go see Emans in Boston and see what he has to say. Widmann actually trained under Emans. Though he doesn't do the VEPTR, he said that he doesn't think would be a candidate. That it's more for fused rib patients. But he said we can go see Emans and see what he thinks. We don't know what to think. I think we feel that Feldman has more confidence in what he wants to do and he is thinking that the recovery will probably be

easier on now than later. Oh, another bit of news. I'm pregnant. Just took a home pregnancy test 2 days ago. Soooooooo, with Baby #2 arriving sometime in September, what would be best? Do surgery now on Baby #1 and have him all healed up before Baby #2 comes along? Or play the waiting game and see when Baby #1 will need to have surgery, possibly around the time Baby #2 is due or when Baby #2 is just a few months old.... Please help..... What do you all think about the two docs' opinions?

Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it!

[Guest guest]

Personally, I would go get a second opinion from a VEPTR surgeon. People who only do fusions aren't going to be able to tell you if he could have the VEPTR or not. Shriners will do it for free, so I would consult with Dr. Betz...not sure if does it for free or not, or if it would possibly be covered under your insurance. This is just my opinion, but I would avoid fusion at all costs if it is possible.

Congrats on baby number 2! How exciting!!

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

's Second Opinion Appt. regarding spinal fusion

Okay, so on Friday we went to see Dr. Widmann at the Hospital for Special Surgery.

He basically said that in the case of a unilateral bar, spinal fusion surgery would be unavoidable. He didn't seem to think the curve was so severe to rush into surgery. He thinks that the fusion wouldn't TAKE well now that there is still cartilage in the spine, especially with just bone graft. He would want to wait until is at least 2, and monitor the curve closely with x-rays in the meantime every 2-2.5 months. He said that he would do the fusion WITH baby-sized instrumentation. He would have him in a body cast 4-6 months, with no bracing necessary afterwards. He did not give us any idea about whether this surgery would compromise his pulmonary function in the future. He said that it's better to have a shorter fusion now that is on the younger side, than needing a longer fusion later. He also said that 's growth is already stunted since 5 of his vertebrae are fused together on one side, so we wouldn't be stunting his growth any more than it already IS. Which makes sense. That side is not growing at all. The left side will continue to grow and he will continue to grow crooked.

Soooooooo, now what do we do? I think we should see one more doc here in NYC, perhaps at Columbia (Vitale or Hyman sound familiar to anyone?) and then possibly go see Emans in Boston and see what he has to say. Widmann actually trained under Emans. Though he doesn't do the VEPTR, he said that he doesn't think would be a candidate. That it's more for fused rib patients. But he said we can go see Emans and see what he thinks.

We don't know what to think. I think we feel that Feldman has more confidence in what he wants to do and he is thinking that the recovery will probably be easier on now than later.

Oh, another bit of news. I'm pregnant. Just took a home pregnancy test 2 days ago. Soooooooo, with Baby #2 arriving sometime in September, what would be best? Do surgery now on Baby #1 and have him all healed up before Baby #2 comes along? Or play the waiting game and see when Baby #1 will need to have surgery, possibly around the time Baby #2 is due or when Baby #2 is just a few months old....

Please help..... What do you all think about the two docs' opinions?

Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it!

[Guest guest]

Hi, all. I really appreciate everyone's advice! I've learned so much from you all. As much as I would hate to go through with surgery on my 13-month-old, I do see the docs' point. This is a case of congenital scoliosis. There is fusion already there. The spine is therefore already stunted from growing properly. They want to fuse the other side so that the spine can grow straight. In the case of infantile idiopathic scoliosis, there is hope that the spine will lengthen and grow and that surgery can be delayed. But if there is already fusion in the spine that will not get unfused, would a different type of surgery/bracing/treatment really be any more helpful? Please, anyone with any thoughts. I know fusion is not ideal for a young baby who has so much time left to grow. But in the case with a baby who already has fusion, what would be ideal? Thanks again

for all your thoughts!!! Claflin <noellesmommy@...> wrote: Personally, I would go get a second opinion from a VEPTR surgeon. People who only do fusions aren't going to be able to tell you if he could have the VEPTR or not. Shriners will do it for free, so I would consult with Dr. Betz...not sure if does it for free or not, or if it would possibly be covered under your insurance. This is just my opinion, but I would avoid fusion at all costs if it is possible. Congrats on baby number 2! How exciting!! Noelle (12-2-01)Ian (8-15-04) 's Second Opinion Appt.

regarding spinal fusion Okay, so on Friday we went to see Dr. Widmann at the Hospital for Special Surgery. He basically said that in the case of a unilateral bar, spinal fusion surgery would be unavoidable. He didn't seem to think the curve was so severe to rush into surgery. He thinks that the fusion wouldn't TAKE well now that there is still cartilage in the spine, especially with just bone graft. He would want to wait until is at least 2, and monitor the curve closely with x-rays in the meantime every 2-2.5 months. He said that he would do the fusion WITH baby-sized instrumentation. He would have him in a body cast 4-6 months, with no bracing necessary afterwards. He did not give us any idea about whether this surgery would compromise his pulmonary function in the future. He said that it's better to have a shorter fusion now that is on the younger side, than

needing a longer fusion later. He also said that 's growth is already stunted since 5 of his vertebrae are fused together on one side, so we wouldn't be stunting his growth any more than it already IS. Which makes sense. That side is not growing at all. The left side will continue to grow and he will continue to grow crooked. Soooooooo, now what do we do? I think we should see one more doc here in NYC, perhaps at Columbia (Vitale or Hyman sound familiar to anyone?) and then possibly go see Emans in Boston and see what he has to say. Widmann actually trained under Emans. Though he doesn't do the VEPTR, he said that he doesn't think would be a candidate. That it's more for fused rib patients. But he said we can go see Emans and see what he thinks. We don't know what to think. I think we feel that Feldman has more confidence in what he wants to do and he is

thinking that the recovery will probably be easier on now than later. Oh, another bit of news. I'm pregnant. Just took a home pregnancy test 2 days ago. Soooooooo, with Baby #2 arriving sometime in September, what would be best? Do surgery now on Baby #1 and have him all healed up before Baby #2 comes along? Or play the waiting game and see when Baby #1 will need to have surgery, possibly around the time Baby #2 is due or when Baby #2 is just a few months old.... Please help..... What do you all think about the two docs' opinions? Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it!

Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

[Guest guest]

Have you read this article ? http://www.orthojournalhms.org/html/pdfs/manuscript-06.pdf#search='lung%20disease%20due%20to%20spinal%20fusion'

It talks about when you have an already shortened spine that shortening even more can exacerbate TIS. It also talks about how VEPTR prevents the need for spinal fusion. VEPTR was developed for congenital kids with complex spinal deformities. I am not a doctor, so of course I couldn't say if your child is a candidate or not, but it would certainly be worth looking into. It also talks about a study they did on 8 kids who were under the age of 5 when they had spinal fusion and what the outcomes were.

Anyway, I don't mean to sound pushy, but I really believe in exploring all options before making decisions esp. when it comes to surgery. You might want to check out the Discovery Channel...sometimes you can buy video tapes of there show and I know they did one on a VEPTR implant with Dr. .

Anyway, the good thing is that you have time and can explore your options since his curve isn't too too bad right now. Good luck with everything.

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

's Second Opinion Appt. regarding spinal fusion

Okay, so on Friday we went to see Dr. Widmann at the Hospital for Special Surgery.

He basically said that in the case of a unilateral bar, spinal fusion surgery would be unavoidable. He didn't seem to think the curve was so severe to rush into surgery. He thinks that the fusion wouldn't TAKE well now that there is still cartilage in the spine, especially with just bone graft. He would want to wait until is at least 2, and monitor the curve closely with x-rays in the meantime every 2-2.5 months. He said that he would do the fusion WITH baby-sized instrumentation. He would have him in a body cast 4-6 months, with no bracing necessary afterwards. He did not give us any idea about whether this surgery would compromise his pulmonary function in the future. He said that it's better to have a shorter fusion now that is on the younger side, than needing a longer fusion later. He also said that 's growth is already stunted since 5 of his vertebrae are fused together on one side, so we wouldn't be stunting his growth any more than it already IS. Which makes sense. That side is not growing at all. The left side will continue to grow and he will continue to grow crooked.

Soooooooo, now what do we do? I think we should see one more doc here in NYC, perhaps at Columbia (Vitale or Hyman sound familiar to anyone?) and then possibly go see Emans in Boston and see what he has to say. Widmann actually trained under Emans. Though he doesn't do the VEPTR, he said that he doesn't think would be a candidate. That it's more for fused rib patients. But he said we can go see Emans and see what he thinks.

We don't know what to think. I think we feel that Feldman has more confidence in what he wants to do and he is thinking that the recovery will probably be easier on now than later.

Oh, another bit of news. I'm pregnant. Just took a home pregnancy test 2 days ago. Soooooooo, with Baby #2 arriving sometime in September, what would be best? Do surgery now on Baby #1 and have him all healed up before Baby #2 comes along? Or play the waiting game and see when Baby #1 will need to have surgery, possibly around the time Baby #2 is due or when Baby #2 is just a few months old....

Please help..... What do you all think about the two docs' opinions?

Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it!

PhotosRing in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

[Guest guest]

Hi , I was told by 3 or 4 experienced orthopedic surgeons here in Australia that fusion would be the only option for my child. They are confident, competent people and they are very persuasive and disdainful of any questions you have etc. They were also wrong and I am achieving a much better outcome by going first to England and then to SLC where we are now being treated. It has not been the easiest path by any stretch of the imagination and involves many sacrifices because of the expense involved and juggling the needs of 3 other children. Bridget doesn't have the fused rib problem but I have a feeling Braydon did and Veptr was designed for kids with fused ribs so I would listen to Carmell. Also go to the veptr.com site and ask the question on their board too as there are very knowledgeable people there. Nearly all their kids are congenital.

The 2 docs you have had opinions from are both pro fusion so it is no wonder their opinions concur. You need to go to a VEPTR doc now and hear their point of view. It's great that you are getting all these opinions as the decisions you make now have huge consequences for your lttle boy not just for now but forever. Congrats on the new baby but don't rush into anything. Newborns are very portable! Bert and Bridget Sinanis <kelpaulton@...> wrote: Hi, all. I really appreciate everyone's advice! I've learned so much from you all. As much as I would hate to go through with surgery on my 13-month-old, I do see the docs' point. This is a case of congenital scoliosis. There is fusion already

there. The spine is therefore already stunted from growing properly. They want to fuse the other side so that the spine can grow straight. In the case of infantile idiopathic scoliosis, there is hope that the spine will lengthen and grow and that surgery can be delayed. But if there is already fusion in the spine that will not get unfused, would a different type of surgery/bracing/treatment really be any more helpful? Please, anyone with any thoughts. I know fusion is not ideal for a young baby who has so much time left to grow. But in the case with a baby who already has fusion, what would be ideal? Thanks again for all your thoughts!!! Claflin <noellesmommy@...> wrote: Personally, I would go get a second opinion from a VEPTR surgeon. People who only do fusions aren't going to be able to tell you if he could have the VEPTR or not. Shriners will do it for free, so I would consult with Dr. Betz...not sure if does it for free or not, or if it would possibly be covered under your insurance. This is just my opinion, but I would avoid fusion at all costs if it is possible. Congrats on baby number 2! How exciting!! Noelle (12-2-01)Ian (8-15-04) 's Second Opinion Appt. regarding spinal fusion Okay, so on Friday we went to see Dr. Widmann at the Hospital for Special Surgery. He basically said that in the case of a unilateral bar, spinal fusion surgery would be unavoidable. He didn't seem to think

the curve was so severe to rush into surgery. He thinks that the fusion wouldn't TAKE well now that there is still cartilage in the spine, especially with just bone graft. He would want to wait until is at least 2, and monitor the curve closely with x-rays in the meantime every 2-2.5 months. He said that he would do the fusion WITH baby-sized instrumentation. He would have him in a body cast 4-6 months, with no bracing necessary afterwards. He did not give us any idea about whether this surgery would compromise his pulmonary function in the future. He said that it's better to have a shorter fusion now that is on the younger side, than needing a longer fusion later. He also said that 's growth is already stunted since 5 of his vertebrae are fused together on one side, so we wouldn't be stunting his growth any more than it already IS. Which makes sense. That side is not growing at all. The left side will

continue to grow and he will continue to grow crooked. Soooooooo, now what do we do? I think we should see one more doc here in NYC, perhaps at Columbia (Vitale or Hyman sound familiar to anyone?) and then possibly go see Emans in Boston and see what he has to say. Widmann actually trained under Emans. Though he doesn't do the VEPTR, he said that he doesn't think would be a candidate. That it's more for fused rib patients. But he said we can go see Emans and see what he thinks. We don't know what to think. I think we feel that Feldman has more confidence in what he wants to do and he is thinking that the recovery will probably be easier on now than later. Oh, another bit of news. I'm pregnant. Just took a home pregnancy test 2 days ago. Soooooooo, with Baby #2 arriving sometime in September, what would be best? Do

surgery now on Baby #1 and have him all healed up before Baby #2 comes along? Or play the waiting game and see when Baby #1 will need to have surgery, possibly around the time Baby #2 is due or when Baby #2 is just a few months old.... Please help..... What do you all think about the two docs' opinions? Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it! PhotosRing in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it!

[Guest guest]

, Please read Moriah's story on 's website at www.infantilescoliosis.org. Moriah has hemiverterbrae at T9 and T10. We did anterior and posterior fusion separately when she was 2 and then 3 and 1/2. It did not stop the progression of her curve or help her grow in any way. The only thing that has conquered her unrelenting progression is the Veptr implants. I would be happy to answer any questions you have. The effects of fusion are irreversible (even if they break it apart and remove it). I humbly suggest you explore all options -- even having a Veptr evaluation with an approved site, Texas if you can get there-- before making this life changing decision. Shellie Grant Sinanis <kelpaulton@...> wrote: Hi, all. I really appreciate everyone's advice! I've learned so much from you all. As much as I would hate to go through with surgery on my 13-month-old, I do see the docs' point. This is a case of congenital scoliosis. There is fusion already there. The spine is therefore already stunted from growing properly. They want to fuse the other side so that the spine can grow straight. In the case of infantile idiopathic scoliosis, there is hope that the spine will lengthen and grow and that surgery can be delayed. But if there is already fusion in the spine that will not get unfused, would a different type of surgery/bracing/treatment really be any more helpful? Please, anyone with any thoughts. I know fusion is not ideal for a young baby who has so much time left to grow. But in the case with a baby who already has fusion, what would be ideal? Thanks again for all your thoughts!!! Claflin <noellesmommy@...> wrote: Personally, I would go get a second opinion from a VEPTR surgeon. People who only do fusions aren't going to be able to tell you if he could have the VEPTR or not. Shriners will do it for free, so I would consult with Dr. Betz...not sure if does it for free or not, or if it would possibly be covered under your insurance. This is just my opinion, but I would avoid fusion at all costs if it is possible. Congrats on baby number 2! How

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

's Second Opinion Appt. regarding spinal fusion Okay, so on Friday we went to see Dr. Widmann at the Hospital for Special Surgery. He basically said that in the case of a unilateral bar, spinal fusion surgery would be unavoidable. He didn't seem to think the curve was so severe to rush into surgery. He thinks that the fusion wouldn't TAKE well now that there is still cartilage in the spine, especially with just bone graft. He would want to wait until is at least 2, and monitor the curve closely with x-rays in the meantime every 2-2.5 months. He said that he would do the fusion WITH baby-sized instrumentation. He would have him in a body cast 4-6 months, with no bracing necessary afterwards. He did not give us any idea about whether this surgery would compromise his pulmonary function in the future. He said that it's better to have a shorter

fusion now that is on the younger side, than needing a longer fusion later. He also said that 's growth is already stunted since 5 of his vertebrae are fused together on one side, so we wouldn't be stunting his growth any more than it already IS. Which makes sense. That side is not growing at all. The left side will continue to grow and he will continue to grow crooked. Soooooooo, now what do we do? I think we should see one more doc here in NYC, perhaps at Columbia (Vitale or Hyman sound familiar to anyone?) and then possibly go see Emans in Boston and see what he has to say. Widmann actually trained under Emans. Though he doesn't do the VEPTR, he said that he doesn't think would be a candidate. That it's more for fused rib patients. But he said we can go see Emans and see what he thinks. We don't know what to think. I think we feel that Feldman

has more confidence in what he wants to do and he is thinking that the recovery will probably be easier on now than later. Oh, another bit of news. I'm pregnant. Just took a home pregnancy test 2 days ago. Soooooooo, with Baby #2 arriving sometime in September, what would be best? Do surgery now on Baby #1 and have him all healed up before Baby #2 comes along? Or play the waiting game and see when Baby #1 will need to have surgery, possibly around the time Baby #2 is due or when Baby #2 is just a few months old.... Please help..... What do you all think about the two docs' opinions? Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it! PhotosRing in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

Photos Got holiday prints? See all the ways to get quality prints in your hands ASAP.