Need Doctor Advise

[kat3]

My daughter is 8 with 24 and 31 curves. We found out in October 2011, went to a specialist in November. Had an MRI to check for tethered cord which was negative in January. Our follow-up appointment is scheduled for Monday, April 30th. I figured we'd do an xray to re-measure her curves and expected them to encourage us to consider a brace. We got a call yesterday from the nurse. She said, "we think you should change your apt to Tuesday so we can also meet with a surge and brace team to save you a trip. WHAT??? I don't think we are ready for surgery and we haven't decided if we for sure need a brace yet. My hubby was livid. We haven't even found out if its progressed and should not even be considering surgery at this point (we don't think?). So, maybe we should get ready for a second opinion. Except WE DON"T KNOW WHERE TO GO. It's so hard to get a good referral. Can anyone suggest a good juvenile orthopedic scoliosis doctor in the Virginia, West Virginia area. We are willing to travel if needed.

[Pooka1]

My daughter is 8 with 24 and 31 curves. We found out in October 2011, went to a specialist in November. Had an MRI to check for tethered cord which was negative in January. Our follow-up appointment is scheduled for Monday, April 30th. I figured we'd do an xray to re-measure her curves and expected them to encourage us to consider a brace. We got a call yesterday from the nurse. She said, "we think you should change your apt to Tuesday so we can also meet with a surge and brace team to save you a trip. WHAT??? I don't think we are ready for surgery and we haven't decided if we for sure need a brace yet. My hubby was livid. We haven't even found out if its progressed and should not even be considering surgery at this point (we don't think?). So, maybe we should get ready for a second opinion. Except WE DON"T KNOW WHERE TO GO. It's so hard to get a good referral. Can anyone suggest a good juvenile orthopedic scoliosis doctor in the Virginia, West Virginia area. We are willing to travel if needed.

Hi and welcome. I am sorry to hear about the diagnosis.

It sounds like they are thinking you probably are looking at bracing. Only surgeons can competently prescribe a brace which is why they said that you need to meet with a surgeon. Your daughter absolutely needs an experienced pediatric orthopedic surgeon expert in JIS even if she never needs surgery. Although there is a real chance your daughter's curve has decreased, 31* is technically in bracing territory and they just want to be ready if the curve is the same or has progressed. Hence the remark.

There are alternatives to years and years of bracing in JIS. There is vertebral body stapling (VBS), tethering, and other modalities that, while surgical, are non-fusion.

Maria on this forum is one of the admins on a VBS support group that you might want to join.

http://www.vertebralstapling.com/

Also, one of the world experts on JIS, Randall Betz, is at the Philadelphia Shriners Hospital. He would be someone who knows the most and best options in any JIS case that can spare a child years and years of bracing.

Good luck.

[mariaf]

Hi,

I agree with everything in Sharon's post, so I won't repeat most of it.

I am the co-moderator of the VBS site that she was referring to and, of course, we would be happy to have you join us to 'poke around'. Shoot me an e-mail if you like (see my signature) and I'll be happy to hook you up.

Just briefly, VBS is basically an alternative to bracing - or as it is sometimes called, an 'internal brace'. It is a one-time surgery which is less invasive than fusion with generally a faster recovery and no restrictions after the initial recovery period.

I agree that you should definitely get a second opinion - by someone specifically experienced in treating juvenile scoliosis - and I can't think of anyone better than Dr. Betz and the team at Shriners Hospital for Children in Phildelphia. The team in Philly also happens to have performed the majority of VBS surgeries to date should you decide to go that route in the future.

They are also open to part-time or night time bracing, when appropriate, and try to look at the entire child, not just the spine, to come up with an individualized plan which best suits that particular child's needs (no cookie cutter treatment plans here).

I strongly urge you to contact Janet Cerrone (her contact info is also in my signature). Janet is the PA to the entire spine team in Philly. She is very knowledgeable and extremely nice. Feel free to say that Maria from VBS site referred you, but she's great with everyone and usually returns calls and e-mails within a day or two.

Best of luck - and please feel free to e-mail me as well.

[Pooka1]

Maria posted some pertinent information.

And just to be crystal clear, orthopedic surgeons are simply the only people who have relevant training to be treating juvenile scoliosis. They have training in non-surgery treatments also. There is simply nobody else who you should allow near your child. Nobody is rushing you into a bracing decision and they especially are not rushing you into a surgical decision. The surgeon will let you know your options. Second opinions are always in order, especially with JIS. You will find competent people in VA and WV but they won't be more competent than the Philly Shriners folks and they might not be as competent as the Shriners guys. Shriners has lots of cases. They are a mecca it seems. They are also free. It truly is amazing.