Newton & Skaggs; Right Thoracolumnarfusion & QOL ; Titanium vs. Stainless

[laakea77]

ALOHA!
My 13-year old daughter has an unusual 60 degree right thoracolumbar curve. We've tried alternative methods to stop its progression
for 10 months, but realized in June that our efforts don't appear to be working. Ten degrees ago, the suggested correction was fusion between T11 & L3.

We live in Hawaii, and while there are several children's hospitals here, we don't have pediatric spine specialists per se. I just made consultation appointments in early August with Peter Newton at Rady Children's Hospital in SD and David Skaggs at Los Angeles Children's Hospital. She also had the chance to see a surgeon from UCSF, Serena Hu, who happened to be vacationing here. But when I researched Dr. Hu, I see that she specializes in adult scoliosis and is not affiliated with a children's hospital.

1. Do any of you have any experience with these doctors and/or hospitals, especially for right thoracolumbar curves? Although I know from reading these boards that Dr. Lenke appears to be the best, I am concerned about our ability to follow-up with doctors that far away from Hawaii. The west coast is our limit for both flying home post-surgery (a 6-hour flight) and being able to return.

2. Are there any other pediatric spine specialists on the west coast, especially, that you'd recommend for right thoracolumbar curves?

3. I've been pouring through Medline, researching. One article talked about elevated serum chromium levels from stainless steel implants (including nickel-free stainless) and the unknown health implications, especially for females with their reproductive lives ahead ("Chromium Ion Release From Stainless Steel Pediatric Scoliosis Instrumentation." Cundy, et all. Spine, April 20, 2010 Vol 35 (9) p. 967-74.) Do any of you know about the value of titanium or vitallium implants vs. Stainless steel? Are these even offered as options to patients?

4. Do any of you have experience with children who've had lumbar vertebrae fused? I am so concerned for my child's Quality of Life if her mobility is severely diminished. She is a competetive swimmer who dreams of singing and dancing on Broadway; will she still be able to do a flip turn? Able to dance and turn? So many success stories I've heard are from those who've had thorasic corrections. I need some help with lumbar stories.

Thank you so much for any help you can provide.
Sign me--Mary, new struggling mom

[Pooka1]

Hi Mary and welcome. I hope some more parents come on here to answer your questions, especially those who have worked with Newton. Newton is a top guy and I am not sure you can do better. Other guys are as good. Lenke only takes the most complex cases any more and I am not sure a 60* TL curve qualifies as complex enough for him. You would have to ask him or his nurse.

Please see comments below...

ALOHA!
My 13-year old daughter has an unusual 60 degree right thoracolumbar curve. We've tried alternative methods to stop its progression
for 10 months, but realized in June that our efforts don't appear to be working. Ten degrees ago, the suggested correction was fusion between T11 & L3.

I am not a surgeon but there does appear to be some guys who will do whatever they can to save levels in the lumbar. Dr. Hey in NC has blogged about his efforts in this area. Of course the curve extent dictates the levels for the most part but per Hey, osteotomies can sometimes be used to limit the distal extent into the lumbar. You would have to get a consult to see what is what with your daughter's case. You might ask Newton about this issue as a first step.

We live in Hawaii, and while there are several children's hospitals here, we don't have pediatric spine specialists per se. I just made consultation appointments in early August with Peter Newton at Rady Children's Hospital in SD and David Skaggs at Los Angeles Children's Hospital. She also had the chance to see a surgeon from UCSF, Serena Hu, who happened to be vacationing here. But when I researched Dr. Hu, I see that she specializes in adult scoliosis and is not affiliated with a children's hospital.

Were it me, because it is a TL curve where it might be possible to save levels in the lumbar depending on which surgeon you choose, I would get a few opinions. Don't be surprised if they are all different, though. There is at least 2 mothers here who each got five opinions. For my daughters, you didn't need to be surgeon to see that they needed T fusions.

1. Do any of you have any experience with these doctors and/or hospitals, especially for right thoracolumbar curves? Although I know from reading these boards that Dr. Lenke appears to be the best, I am concerned about our ability to follow-up with doctors that far away from Hawaii. The west coast is our limit for both flying home post-surgery (a 6-hour flight) and being able to return.

See above.

2. Are there any other pediatric spine specialists on the west coast, especially, that you'd recommend for right thoracolumbar curves?

There are definitely other top pediatric guys on the west coast. Gupta is one of them. Maybe others will mention who else.

3. I've been pouring through Medline, researching. One article talked about elevated serum chromium levels from stainless steel implants (including nickel-free stainless) and the unknown health implications, especially for females with their reproductive lives ahead ("Chromium Ion Release From Stainless Steel Pediatric Scoliosis Instrumentation." Cundy, et all. Spine, April 20, 2010 Vol 35 (9) p. 967-74.) Do any of you know about the value of titanium or vitallium implants vs. Stainless steel? Are these even offered as options to patients?

Surgeons seem to have preferred materials they work with. Patients don't specify implant material. If you have a preference, you have to find a surgeon who can work with that material.

4. Do any of you have experience with children who've had lumbar vertebrae fused? I am so concerned for my child's Quality of Life if her mobility is severely diminished. She is a competetive swimmer who dreams of singing and dancing on Broadway; will she still be able to do a flip turn? Able to dance and turn? So many success stories I've heard are from those who've had thorasic corrections. I need some help with lumbar stories.

The surgeon can advise you on this in addition to the other parents on here.

Thank you so much for any help you can provide.
Sign me--Mary, new struggling mom

You're doing a great job! Stay strong. Good luck.

Sharon

[LindaRacine]

ALOHA!
My 13-year old daughter has an unusual 60 degree right thoracolumbar curve. We've tried alternative methods to stop its progression
for 10 months, but realized in June that our efforts don't appear to be working. Ten degrees ago, the suggested correction was fusion between T11 & L3.

We live in Hawaii, and while there are several children's hospitals here, we don't have pediatric spine specialists per se. I just made consultation appointments in early August with Peter Newton at Rady Children's Hospital in SD and David Skaggs at Los Angeles Children's Hospital. She also had the chance to see a surgeon from UCSF, Serena Hu, who happened to be vacationing here. But when I researched Dr. Hu, I see that she specializes in adult scoliosis and is not affiliated with a children's hospital.

1. Do any of you have any experience with these doctors and/or hospitals, especially for right thoracolumbar curves? Although I know from reading these boards that Dr. Lenke appears to be the best, I am concerned about our ability to follow-up with doctors that far away from Hawaii. The west coast is our limit for both flying home post-surgery (a 6-hour flight) and being able to return.

2. Are there any other pediatric spine specialists on the west coast, especially, that you'd recommend for right thoracolumbar curves?

3. I've been pouring through Medline, researching. One article talked about elevated serum chromium levels from stainless steel implants (including nickel-free stainless) and the unknown health implications, especially for females with their reproductive lives ahead ("Chromium Ion Release From Stainless Steel Pediatric Scoliosis Instrumentation." Cundy, et all. Spine, April 20, 2010 Vol 35 (9) p. 967-74.) Do any of you know about the value of titanium or vitallium implants vs. Stainless steel? Are these even offered as options to patients?

4. Do any of you have experience with children who've had lumbar vertebrae fused? I am so concerned for my child's Quality of Life if her mobility is severely diminished. She is a competetive swimmer who dreams of singing and dancing on Broadway; will she still be able to do a flip turn? Able to dance and turn? So many success stories I've heard are from those who've had thorasic corrections. I need some help with lumbar stories.

Thank you so much for any help you can provide.
Sign me--Mary, new struggling mom

Hi Mary...

Drs Skaggs and Newton are two of the best known pediatric scoliosis specialists in the U.S. While you can go elsewhere and probably find more, I think you'll be impressed with both of them. While Dr. Hu does mostly adults, she does see children. I think 100% of surgeons who are mostly adult surgeons, also do surgery on kids. Dr. Hu is no longer making appointments at UCSF, as she's moving over to Stanford. Drs. Sigurd Berven, Vedat Deviren, Bobby Tay, and Shane Burch all treat mostly adults at UCSF, but also see adolescents. If you want to see other surgeons in California, you might want to check out Behrooz Akbarnia in San Diego or Mohammad Diab, who sees only kids, at UCSF.

Sharon did a good job of answering your questions, but I wanted to comment on the issue of metals. If you do some searching here, you'll find several discussions on the topic. And, in some of those threads, you'll find a comment from me on this subject. You are doing a great job of finding a good surgeon for your daughter. These doctors have performed thousands of these surgeries. They've all done at least 4 years of college, 4 years of medical school, at least 5 years of residency, and most have done at least 1 year of fellowship. They've all done a huge amount of research. NONE of us could ever hope to know anywhere near as much as these surgeons. There are many components that go into selecting the appropriate implants. You might be able to affect what implant a surgeon implants in your daughter, but I personally would never want to do that, as I KNOW I don't know the entire story. My advice, if you haven't already figured it out is, to find a doctor you can trust, and then let them do the right thing.

Regards,
Linda

[Pooka1]

One more note on the issue of instrumentation material... all of them have pluses and minuses. If there was one clear winner we would see everyone using that. But we don't see that.

[Pooka1]

I need some help with lumbar stories.

By the way, I would not refer to your daughter as a "lumbar" case. She has a TL curve and that suggests that some of her lumbar is not involved in the structural curve. If the fusion can stay shorter then she may only ever need part of her lumbar fused. Hence some surgeons standing on their heads to save levels. Just reading the testimonials, the loss of ROM when some of the lower lumbar is left unfused is minimal. It's only when L5 or so is fused that folks see to notice a big difference. I hope that is close to accurate and really hope people who know first hand will comment so you don't have to rely on my random readings.

I would not wait any longer if I were you. TL curves, to the extent they may propagate further into the lumbar, are emergency situations in my opinion.

Good luck.

[laakea77]

Thank you all for your words of support and wisdom. I will check out those docs and look up the word "osteotomy"!
yours,
Mary

[Pooka1]

Mary, check out this thread to see if you think there is anything relevant to your daughter's situation or to trigger questions for the surgeons. This is the post where Dr. Hey mentions osteotomies. Here, he is trying to save levels in a frank lumbar. Your daughter's TL curve presumably would be an easier case in that it probably doesn't extend as far into the lumbar as a frank lumbar case but I don't know that because I am not a surgeon!!!

http://www.scoliosis.org/forum/showt...his-head-again

16 yo Holly straightened up this morning with her severe trunk shift and lumbar scoliosis

Holly had a collapsing adolescent idiopathic scoliosis, lumbar Lenke 5C. We had to do extensive preoperative planning due to the degree of her trunk shift and some concerns about an oblique takeoff at the pelvis. Preoperative CT scan as well as bending X-Rays and in-surgery prone view with manual pressure to fully evaluate the lumbo-sacral junction was very helpful to confirm that we could safely preserve her bottom two discs, rather than having to fuse to the iliac wings.

Extra care was also taken to help with her trunk shift with fine adjustments to our correction while doing rod insertion. Some Smith-Peterson osteotomies also helped to improve her correction and ensure proper lordosis.

I think she will be very happy with her new posture!
Estimated Blood Loss was only 75 cc. No blood transfused.
Surgical time 2.5 hours, with fusion levels T11-L4.

[titaniumed]

Aloha!

Welcome to the forum.

I know Dr Joseph Orchowski does scoli surgeries out of Trippler.....(Oahu)

Yes, the metals selection topic is extremely complicated....with a completely different set of parameters when used in our bodies. Understanding implant interface histology, will take a few years to understand. Biocompatability is also an ever changing science.

Surgeons are trained using different systems....systems that are engineered by the hardware companies. My hardware is Synthes Pangea system, its titanium alloy is....Ti-6Al-7Nb.
Ti-6Al-7Nb was developed as a biomedical replacement for Ti-6Al-4V alloy because Ti-6Al-4V contains vanadium, an element that has demonstrated cytotoxic outcomes when isolated.[15]:1 Ti-6Al-7Nb contains 6% aluminium and 7% niobium.[15]:18
"Ti6Al7Nb is a dedicated high strength titanium alloy with excellent biocompatibility for surgical implants. Used for replacement hip joints, it has been in clinical use since early 1986."[16]

http://en.wikipedia.org/wiki/Titanium_alloy



Titanium’s best qualities are its anti-corrosiveness. It will outlast just about anything else in salt testing, which is how metals are tested. (Salt spray tests) That’s why your cars in Hawaii rust out so quickly.....(smiley face) Just add a little bit of salt, and see what happens.



Great posting by Sharon and Linda BTW. I just usually add some tidbits here and there.....maybe a joke now and then.



Ed

[Pooka1]

They've all done a huge amount of research.

If there is someone with more journal articles and meeting abstracts in pediatric scoliosis than Newton, I don't know who it would be. Just my impression.

[leahdragonfly]

Hi there,

Dr Newton also does (and is a pioneer in) spinal tethering, a fusionless option for some kids with scoliosis. I don't know if a 60-degree curve is eligible for tethering, but I know of several kids with high-50's curve who have been tethered sucessfully. Definitely at least worth asking about. Early on with tethering they could not tether TL curves but I think I have now heard of some being done, either by him or at Shriner's Philadelphia.

I know it is difficult and seems daunting to fly for spinal surgery and care, but it is possible. We flew three times in 2 months from Oregon to St Louis for my daughter's surgery, and she was really a champ even flying home 5 days after her surgery. I know of a family that flies from Germany to see Dr Newton, and their daughter had a very successful tethering with him on a very large curve (50's I think).

If you PM me I can put you in touch with some families whose children had surgery with Dr Newton. Best of luck with your research, and I'm sure you can't go wrong with either Newton or Skaggs.

[laakea77]

Thank you all, so much.
This morning, I woke up for the first time in weeks smiling--a feeling of acceptance and hope that we are moving in the right direction.

I checked out Dr. Gupta's and Dr. Akbarnia's bios. Heading to northern CA will be tough for us this trip to see Gupta, but we'll be in San Diego.

Dr. Akbarnia is extremely eminent--but I wonder if he is in his prime to perform this kind of surgery? I was also intrigued that his webpage says he uses BMP when possible (although I've read it is more infection-prone).

p.s. Dr. Newton's nurse said my child is not a candidate for tethering due to the location and degree of curvature.

Thank you all, so much.
Mary