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tampamom
02-27-2013, 02:13 PM
Okay so in reading this forum I have heard a lot of Dr. names mentioned but wasnt keeping a comprehensive list.

Lenke - St. Louis
Bentz -
Hey-
Cohen - Tampa
? -Dr. in Philly

Top picks in New York and Southern CA.

I know I can get a list from SRS and of course I will be reading Dr. websites too. Private message me if you'd rather: who and why.

Thanks!

tampamom
02-27-2013, 03:40 PM
http://beckersspine.com/orthopedic-spine-industry-leaders/item/2933-8-leaders-in-scoliosis-to-know

jrnyc
02-27-2013, 04:08 PM
yes, many of those names are well known on forum...
i did not know there is a foundation for minimally invasive
spine surgery...but i flew to LA a few years ago and had a consult
with Dr Anand as he has been a top proponent for minimally invasive
surgery for spine, including lumbar spine, which is newer....
he does not take my insurance...so i paid cash for the consult, as i
did with Dr Boachie...
there are other names that are not on the list of top surgeons...
in NYC, Lonner and Neuwirth are two more to know of...
i think the resources list on forum is the best place to go for names,
as you can look them up geographically....

jess

Pooka1
02-27-2013, 08:42 PM
Okay so in reading this forum I have heard a lot of Dr. names mentioned but wasnt keeping a comprehensive list.

Lenke - St. Louis - I have heard Lenke only takes the worst cases. You would have to ask but I am guessing your son is not a worst case. Also the waiting time can approach a year because he is one of the best.

Bentz - Randall Betz - world expect on stapling. Probably has seen more IIS/JIS cases than most others.

Hey- Very clever surgeon in Raleigh, NC. He has my undying admiration for his sense on scoliosis (stitch in time saves nine, trying to save levels in the lumbar in young lids, inventing stuff, etc. etc. etc.)

Cohen - Tampa - I have certainly heard his name around this sandbox.

? -Dr. in Philly - Samdani? Works with Betz.

Top picks in New York and Southern CA. - Boachie, Lonner, Neuwirth as names bandied about here.

San Diego - Peter Newton - pioneering tethering. I bet he has one million pubs. Same with Lenke.

Many others.

leahdragonfly
02-27-2013, 10:06 PM
Hi,

Dr Ashgar is in Miami, Florida and trained under Dr Betz at Shriner's in Philadelphia. I have never met him personally but correspond with many families under his care. He is reputed to be extremely skilled and is beloved by patients and parents alike. That's who I would look for if I lived in Florida.

Here are several links: http://www.mch.com/medicalServices/findPhysician/physicianDetails.aspx?doctorID=1501

http://www.scoliosis.org/forum/showthread.php?13443-Any-reference-for-spinal-surgery-at-Miami-Children-Hospital-with-John-Asghar-MD

mariaf
02-28-2013, 10:13 AM
http://beckersspine.com/orthopedic-spine-industry-leaders/item/2933-8-leaders-in-scoliosis-to-know

What jumped out at me was that while these guys (Boachie, Anand, Errico) who are certainly all top notch, may treat children, they do not specialize in kids, meaning that the majority of their practice may not be AIS/JIS. Some treat both adults and children. I am not saying that this is necessarily a bad thing, but often if the bulk of one's practice is not children, they may not be interested in learning about things like tethering, for example. For me, personally, I would want to see someone whose main focus is children. (I would also at least look into tethering if it was my child.)

Just my two cents......best of luck!

tampamom
03-04-2013, 02:57 PM
We are busy lining up 2&3 opinion doctor appointments for my son's surgery plans and found this story to be encouraging

http://www.bridwell-spinal-deformity.com/AIS-19-years-after-surgery

I discovered Dr. Keith Birdwell from a friend of a friend (love facebook :) He was a patient of Dr. Birdwll, 8 yr PostOp male and is doing great. Granted he was fused in only the upper thoracic. This doctors website if very informative and from reading one case he did not even fuse a curved Lumbar, opting instead to give her more mobility!

Thanks to Pook1, I am really working hard to make sure that initial recommendation to go to L3 is neccessary and not just "standard".

http://www.bridwell-spinal-deformity.com/AIS-19-years-after-surgery

Just meet locally with a group of 5 moms all with Scolio teens close or about to go to surgery. It was so nice. And a Dr. Mendelow from South Carolina came up as a suggestion for another Dr. opinion....

Oh, and Dr. Newton's nurse called to say my son is NOT a candidate for tethering given he is risser 4.

Pooka1
03-04-2013, 05:03 PM
Thanks to Pook1, I am really working hard to make sure that initial recommendation to go to L3 is necessary and not just "standard".

Hey.

I re-read your initial post and you said the fusion would go to L4, not L3. The reason why I became alarmed is because you said L4. As I understand Boachie's talk and what our surgeon said, that is very likely countdown territory. L3 is not so alarming but if you can stay above there that would be better. The higher the better when it comes to lumbar fusions unless going to pelvis right away... no countdown involved with that obviously.

The other issue is understanding whether the lumbar is structural or compensatory and how the hypo-lordosis plays into all of this.

tampamom
03-04-2013, 09:40 PM
Yes, you are right Pook1, it is L4 that the doctor recommended :( Guess I am on overload a litte trying to keep this all straight. But I am going to have to hear that from more than one like you suggested. Here is a quote by Birdwell explaining how important it is to stop at L3, like you also pointed out.

Dr. Bridwell and his team know that, if at all possible, it’s better to fuse to L3 rather than L4 (the third lumbar—waistline level between the rib cage and pelvis —vertebrae rather than the fourth). That’s because if there’s a fusion all the way to L4, the patient loses more mobility in the spine.

Thanks for pointing all this out!

titaniumed
03-04-2013, 11:22 PM
Tampamom,

More info

Here is a Dr Boachie interview..... Its mainly about adults but mentions what Sharon had been talking about in fusing to L4.


http://www.hss.edu/professional-conditions_adult-scoliosis-low-lumbar-degenerative-disease-spinal-stenosis.asp

If you fuse a 13-year-old to L4, 20 to 25 years later, at the most, he or she is going to have problems at L4-5 and L5-S1 levels. So I tell them to take it easy a little bit, and avoid excessive high impact, rotational sports and activities, no other things that will cause early degeneration. But if you fuse them to L1 or T12, they can do very well for the rest of their lives, provided the remaining lumbar spine is properly aligned and has not shifted.

Ed

tampamom
03-04-2013, 11:53 PM
Ed,

I was begining to think about long term issues for L4-5 by just browsing this board and seeing all the 2nd surgeries later in life! I could only deduce that it damages the last few vertebra eventually. kinda glad to see someone say it.

So what do you make of Birdwell's case here http://www.bridwell-spinal-deformity.com/AIS-double-major ? The Xray's seem to show he stop short in the Lumbar area and the curve still straightened up? Luck?

Thanks!

-C

Pooka1
03-05-2013, 07:21 AM
Tampamom,

More info

Here is a Dr Boachie interview..... Its mainly about adults but mentions what Sharon had been talking about in fusing to L4.


http://www.hss.edu/professional-conditions_adult-scoliosis-low-lumbar-degenerative-disease-spinal-stenosis.asp

If you fuse a 13-year-old to L4, 20 to 25 years later, at the most, he or she is going to have problems at L4-5 and L5-S1 levels. So I tell them to take it easy a little bit, and avoid excessive high impact, rotational sports and activities, no other things that will cause early degeneration. But if you fuse them to L1 or T12, they can do very well for the rest of their lives, provided the remaining lumbar spine is properly aligned and has not shifted.

Ed

Thanks for posting that. Very dense!. I will have to study that.

Sharon

Pooka1
03-05-2013, 07:41 AM
Ed,

I was begining to think about long term issues for L4-5 by just browsing this board and seeing all the 2nd surgeries later in life! I could only deduce that it damages the last few vertebra eventually. kinda glad to see someone say it.

So what do you make of Birdwell's case here http://www.bridwell-spinal-deformity.com/AIS-double-major ? The Xray's seem to show he stop short in the Lumbar area and the curve still straightened up? Luck?

Thanks!

-C

First of all, you need to have some surgeon PROVE to you that the lumbar is structural as with bending films. If it isn't then all this business about how far to go into the lumbar may be moot. It may NOT be moot if there are other considerations like the hypo-lordosis... I have no idea. I'm just saying I would want to know if the lumbar was structural or not before I could go on to discuss treatment with any surgeon.

Assuming the lumbar is structural...

I would say based on the testimonials on this forum that many surgeons will stop at L3 on a kid per se unless the lumber is truly severe. I don't know what happens with these kids but maybe if the balance is perfect they can hold out a long time or forever before needing an extension. On that Bridwell case, he seems to be following suit about simply not going below L3 on a kid. Also, it seems like the apex of her lumbar curve was fairly high and if he was able to de-rotate the heck out of that, she might be stable for a long time. De-rotating seems to be mentioned a lot so I assume it is important in the long-term stability of these partially fused lumbar curves. That and perfect balance. Someone like Bridwell or Hey can hit the balance in all three planes and that seems to matter. My one kid seems to be perfectly balanced. The other kid is close to that. With their fusions ending at L1, they are thought to never need an extension in their lifetime though I am more hopeful of the perfectly balanced kid than of the other.

I can only think of two cases here where a teenager was fused to L4 and one was done by Lenke so I assume that could not be avoided. That was a lumbar and also one of the most beautiful, artful corrections I have seen. Hopefully Lenke achieved perfect balance and complete de-rotation such that if she takes it easy, maybe she will never need an extension. The other was a double major.

A third case would be the teenage boy where Dr. Hey stood on his head but still went to L4. I think that was in lieu of fusing a teenage boy to pelvis. Maybe if he is perfectly balanced he will get a few decades or more before that has to be extended. It beats being fused to pelvis right away though.

I am not a surgeon so don't take anything I say as correct necessarily. Run everything by a surgeon.

titaniumed
03-05-2013, 09:36 PM
Luck?



I wouldn’t call it luck.....I don’t like to use the word luck or lucky since there specific reasons why things happen.

You need luck in rolling dice.....Like Robert Redford rolling the 7’s on the come out with a mil on the pass line. That’s luck. That’s also Hollywood. Scoliosis surgery is not a craps game, or shouldn’t be. But it can be, with the wrong surgeon. That’s why multiple opinions are good things. 2 surgeons really need to agree on procedure.....Its like counting beans in a jar. 2 wrong counts mean you have to do a re-count.

When doing an initial scoliosis surgery, you need to start off right. You need an experienced surgeon. Dr Bridwell is one that falls into this category. There are also many other good scoliosis surgeons out there....

You could e-mail his x-rays to Dr Pashman in LA. He does consults for a few hundred dollars I believe, and you don’t have to fly there. He is also an excellent surgeon.
http://www.cedars-sinai.edu/Bios---Physician/P-Z/Robert-S-Pashman-MD.aspx
Great site with examples....
http://www.espine.com/scoliosis-cases.htm

Your son has a very flat spine in the sagittal plane. This is another factor in the equation that only an experienced scoliosis surgeon or surgeons can answer. Get a few opinions on this.

Your doing a good job!

Sharon, I knew you would like the HSS site. You can get lost in there for days.....

Ed

tampamom
03-06-2013, 10:14 AM
Thank you everyone who is talking this through with me. Thank you Ed for the links, more reading. I can't tell you how many hours a day I spend reading, taking notes and emailing, so gald to have the option.

In choosing a Dr for 2 or 3 opinions, Does it matter if they specialilze in Adult or Pediatrics Scolio surgeries. I think there would be pro and cons for us, given my son is risser 4, he is not a candiate for tetavehering or growing rods but not being an older adult he doeesn't have those other complications. ( well I still have much to learn about his Dx)

Are there surgeons who focus on AIS primarily?

I'd like to think my son is in a beneficial spot age wise for surgery, but my big question is finding someone who can help me understand/accept the L4 fuse. I want a Dr. who understands this concern and thinks out-side the box, to discuss and weigh the long term consequences for my teen. That makes me think a doctor treating adults might have more history and perspective on spine health 15 yrs later. Does anyone have an opinion on how I should proceed on this or who?

I am reading up on Nathan Lebwohl, MD in Miami given he is listed in the top 1% nationally for his speciality, but I think his speciality is Adult Scolio....

Thanks so much, this forum as been a tremendous help.

tampamom
03-06-2013, 10:24 AM
Thank you Ed for Dr. Pashman's link, that is exactly the data I am looking for. A quick glance shows 24 AIS cases only 3 went to L4, most stopped at L1. Probably will see about an Xray consult regarding the length of my sons fusion.

titaniumed
03-06-2013, 09:52 PM
Are there surgeons who focus on AIS primarily?



Yes....

Go ahead and read this material. This is Linda’s site.
http://www.scoliosislinks.com/Specialists.htm

and this....
http://www.spineuniverse.com/treatments/surgery/how-select-spine-surgeon

The surgeon should have completed a spine fellowship program. A fellowship in scoliosis surgery. The leading centers would be places like

HSS Hospital for Special Surgery....NYC
http://www.hss.edu/files/SpineFellowship.pdf
TCSC Twin Cities Scoliosis center Minneapolis
http://tcspine.com/education/physician-education/fellowship-program
UCSF University of California San Francisco
http://orthosurg.ucsf.edu/education/programs/fellowships/spine/
University of Washington St Louis
http://www.ortho.wustl.edu/content/Education/2437/FELLOWSHIP-TRAINING/Spine-Surgery-Fellowship-.aspx

Now you can see how specialized and demanding this training is. USMLE scores must be high.......(United States Medical License Exam) This is the Federal test that Medical students must take 1/2 way through medical school. Scoring on this test, decides the path or direction a doctor can follow....and those that pursue have to have the highest scores in the nation. 2 years ago, 19,000 took that test along with my God daughter. She will be an MD on 05/17/13. I am very pleased.....(Big smiley face)

I know, I like to bury people with links....(No shortage of reading material)

It helps to have a full understanding.....

Ed

titaniumed
03-07-2013, 08:29 PM
I hope I didn’t bog you down with too much....I know, that was a lot.

Answering certain questions sometimes can take quite a bit of reading.....sorry.

Ed

Pooka1
03-07-2013, 09:19 PM
Thank you Ed for Dr. Pashman's link, that is exactly the data I am looking for. A quick glance shows 24 AIS cases only 3 went to L4, most stopped at L1. Probably will see about an Xray consult regarding the length of my sons fusion.

Hi. The reason many fusions stop at about L1 is not because this surgeon is reluctant to fuse L curves. It is because many/most curves that progress to surgical range are just thoracic. It is a small mercy that the most prevalent curves (i.e., thoracic) are also the least onerous to fuse because there is little bending through the torso/rib cage that can be lost when fused. As I mentioned, the loss of motion through the torso is so small with a T fusion that my daughter could not remember if it was any different from before she was fused. I watched her try to bend to the side and I told her I thought it was somewhat less than normal range of motion but she has no way of relating to that. Basically she looks and feels normal. Same for the other kid. Huge win.

Fusions are indicated for large, progressive thoracic curves because the upside is far greater than the down side. Fusion of double majors curves and lumbar curves can be more problematic. In those cases, it becomes critical to find a surgeon who will stand on his head (osteotomies, de-rotation maneuvers, etc.) to keep the fusion as high as possible if there is a structural TL or L curve. That's my opinion.

tampamom
03-07-2013, 09:43 PM
Thank you Ed, I love reading and researching. So I will get right on it. We do have a few doctors on our short list for consult. I am going to read your links and think about our sons situation. Here is how it stands:

Lenke - in person appt end of this month
Hey - did brief phone consult himself and wants to see bending Xrays. - Plan to go see
Pushman - will do an Xray, MRI consult remote
Nathan Lebwohl, MD - starting my research - Might try to go see, easy drive

Starting to get there I guess. Luckily my son feels fine, great in fact. I just hope things aren't moving while we sort this out :/

Thanks again!

-Cecilia

tampamom
03-07-2013, 09:54 PM
Yes, that is right Pook1, I misspoke in that Pashman's case studies were not all double curves. Good point. All lots of good points :)

Pooka1
03-07-2013, 10:28 PM
Excellent work! Dr. Hey wants to see bending films. Well what do you know? :-)



Lenke - in person appt end of this month
Hey - did brief phone consult himself and wants to see bending Xrays. - Plan to go see
Pushman - will do an Xray, MRI consult remote
Nathan Lebwohl, MD - starting my research - Might try to go see, easy drive

jrnyc
03-07-2013, 10:46 PM
hi tampamom
perhaps you didn't notice it. but the resources link on the NSF website
home page allows for you to click on a specialty for the surgeons...
just click where it says "geographic and specialty info"...
something like that, and the specialty link will pop up...
will allow you to search by what the surgeon specializes in.

jess

tampamom
03-07-2013, 11:03 PM
Yeah, been there, it is certainly a good starting point. thanks.

jrnyc
03-07-2013, 11:24 PM
strange...
i went to "geographic and specialty search" (which is what it is called)...i typed in NYC, NO surgeons came up under adolescent for specialty...but several came up when i typed in Tampa FLA...
i wonder how that can be, as i know several of the top surgeons
in Manhattan operate on many many children/adolescents each year...

strange...

jess

mariaf
03-08-2013, 09:54 AM
That's true, Jess.

Dr. Vitale specializes in scoliosis surgery in children, Dr. Lonner in both children and adults, just to name two that pop into my head in NYC. Something is wrong if no names come up under that search. Hopefully, the moderators can fix this.

LSKOCH5
03-25-2013, 08:31 PM
Hello Cecilia -
Are you going to see Geof Cronen in Tampa as well? I understand you're seeing some incredible surgeons, but please consider an appointment with him. He is right in Tampa, did his fellowship under Dr. Lenke, & was recommended by Dr Lenke to us for our son. We could not be any happier with the outcome, thank God & thank Geof!(Also - so very sorry, but I haven't been on the boards in months. I had no notification that you'd pm'd me until I got on tonight. Please check your emails).

tampamom
03-25-2013, 08:55 PM
So glad to hear you are pleased with Cronen. When I called Shriners, he was book up until June, so we took an appointment with a Dr. Mason hoping he can get us to Cronen sooner. But I suspect Lenke can refer us to Cronen also.

Here are our Consults so far:

Dr. Neustadt 2/21
Dr. Hey 3/26
Dr. Lenke 3/27
Dr. Mason 4/9
Dr. Lebwohl 4/22

My husband and son are leaving tomorrow for the next 2 appointments. Hoping for good news on his bending Xrays tommorrow. I've typed up a four page set of questions and back ground info for my hubby to take with him. Using a combination of questions from on this board and the book "the Definitive Patients's Reference guide". Plus a bunch of notes on vertebra: neutral, stable, CSVL and PJK. So well see.....

This forum has been a wealth of information and encouragment, thanks everyone!

LSKOCH5
03-26-2013, 05:09 PM
Forgive my asking - but do you have insurance that would pay for his surgery? If so, I'd see if going w Cronen & Tampa General would speed things up, if you'd rather an earlier surgery. His office phone is 813-979-0440.

jrnyc
03-26-2013, 11:53 PM
Dr Lenke is probably THE top scoli surgeon in the country...
it used to be said that Lenke only took the "worst" cases...
do not know if that is true anymore...
if not, why not go with him??

best of luck...
jess...and Sparky

mariaf
03-27-2013, 12:52 PM
I agree, Jess. Dr. Lenke is one of a handful of doctors whose name has come up again and again over the years as one of the truly brilliant scoliosis surgeons in the country.

jrnyc
03-27-2013, 07:57 PM
so true, Maria
too bad we can't clone him and put a Dr Lenke in every state
where patients need surgery!
not to say we don't have great scoli surgeons in NYC, because we do...
it would just be nice if we had a few more of Dr Lenke to go around!

jess...and Sparky

Pooka1
03-27-2013, 08:53 PM
Great news! The lumbar is not structural!


Well, I've been back to work for a little over a week now, and things have been quite busy as usual. I've seen several out of state adolescent scoliosis patients in for consultation -- the most recent was a nice 14 you young man and his dad who flew up from Tampa, FL area to see me. He's got a 54 degree thoracic curve, and on forward bend had a lumbar hump, but on bending X-Rays that I got today showed them that the lumbar curve straightened out completely. This was awesome news to the mom Cecilia when I did an internet X-Ray review for her, since she had been told that her son needed both the thoracic and lumbar curve corrected -- a bigger deal especially for her son who is avid tennis player.

http://drlloydhey.blogspot.com/2013/03/have-you-hugged-your-spine-surgeon.html

tampamom
03-27-2013, 09:58 PM
Yep! My son and hubby met with Dr. Hey on Tuesday, what an impressive doctor and staff!!! Thank you so much Pooka1 for bringing him to our attention. He is everything you'd want your surgeon to be: brilliant, approachable, passionate, and trustworthy.

Dr. Hey did bending Xray's which revealed a straight lumbar, only slightly rotated!!!!! I wept tears of joy with this news :)

They also had another consult today with Dr. Lenke in St. Louis and he too agreed that the Lumbar should be saved. Pointing out there are no guarantee's, it just seems like the best choice for our teen. Lenke said he would not do our son's surgery since it wasn't serve enough I guess and referred us to a local Doctor, Cronen, who apprenticed under him, so we have that consult 4/17th.

This is all very good news for us, what a relief. I feels like everything is going to be okay. Not easy, but doable.

I am just so thankful for everyone on this forum who has reached out and helped me sort through this. Really just participating in forum helps. I've gone back and read so many posts from years ago, it has been a great resource.

Regards,

-C

Pooka1
03-28-2013, 06:50 AM
Hey C,

It is such great news. I just don't understand why any surgeon would fuse the lumbar on a child without determining whether it is structural or not. There is some long term data on fusing only the structural portion of a false double and it is all good. Maybe the key is to achieve perfect balance and the surgeons who fuse the lumbar didn't achieve that on some patients and had to go back in. Who knows. I think I have seen at least one study where they did not fuse the structural lumbar in a double major in kids I think and that was not heinous, at least in the short term. If that is correct then no lumbar in a false double (compensatory lumbar) should ever be fused as far as I can tell.

I never met him but Dr. Hey seems like one of those high performance individuals you see every now and then. He's just talented and driven. That the combination you need. Maybe most orthopedic surgeons are like that... I would not be surprised. If either of my kids ever needed a revision, I would get an opinion from Dr. Hey.

Pooka1
03-28-2013, 06:58 AM
By the way, would you feel comfortable stated who the surgeon was who did not think it necessary to determine if the lumbar was structural or compensatory on a child? He wanted to fuse to L4 would would likely have meant a fusion to pelvis at some point.

I think that would be very valuable for future parents coming on this forum. If I was the forum owner, I would make it a sticky thread so it stayed near the top. This would be just the flat fact that this surgeon did not do bending films and was going to L4 on what turned out to be a compensatory lumbar curve on a child.

tkare
03-28-2013, 09:11 AM
What great news! I am so happy that you sought out extra opinions! You must be so relieved. Even though this isn't easy it will be better to have peace of mind knowing you are doing the right thing for your child. Thanks for the update and best of luck!

Kat3573
03-28-2013, 12:46 PM
Hi,

Dr Ashgar is in Miami, Florida and trained under Dr Betz at Shriner's in Philadelphia. I have never met him personally but correspond with many families under his care. He is reputed to be extremely skilled and is beloved by patients and parents alike. That's who I would look for if I lived in Florida.

Here are several links: http://www.mch.com/medicalServices/findPhysician/physicianDetails.aspx?doctorID=1501

http://www.scoliosis.org/forum/showthread.php?13443-Any-reference-for-spinal-surgery-at-Miami-Children-Hospital-with-John-Asghar-MD


Dr asghar is amazing! He's my surgeon. His goal is not to make his patients back straight, but to help them keep their flexibility as much as possible in order to have a normal life. He said if I went to a Shriner I would have been fused from T2-L3, but he fused me from T4-L1. Since he was trained under Dr. Betz, he will go to Shriners philidelphea to operate if patient has finacial issues or lives in the area. He also says that as long as he's alive he will take are of his patients, even if They were operated by him 30 years ago he would still see them (even of they're an adult) because only he knows what he did to them. He's a clever, smart, hilarious, caring surgeon over all.

mariaf
03-29-2013, 04:26 PM
By the way, would you feel comfortable stated who the surgeon was who did not think it necessary to determine if the lumbar was structural or compensatory on a child? He wanted to fuse to L4 would would likely have meant a fusion to pelvis at some point.

I think that would be very valuable for future parents coming on this forum. If I was the forum owner, I would make it a sticky thread so it stayed near the top. This would be just the flat fact that this surgeon did not do bending films and was going to L4 on what turned out to be a compensatory lumbar curve on a child.

I agree that would be a great idea.

While I understand if Mom isn't comfortable sharing this information, it would as you say be very valuable for new parents coming on to this forum. I know that I sure would want to be aware of this if I was looking for a surgeon for my child.

Pooka1
03-29-2013, 08:02 PM
I agree, Maria, that I would understand why she would not want to name the surgeon despite this being just a fact. I wonder if he would even mind... fusing the lumbar on false doubles in teenagers is just the way he rolls apparently.

Kat3573
03-29-2013, 11:19 PM
Dr. Lebwohl was my second opinion. He focuses more on adults than children. He is a good surgeon and very knowledgable. I would ask him that question if you see him. My my ask what does he thinks about Dr. Asghar(I feel like I'm bringing him up too often) and he said that he thinks Dr. Asghar is a good surgeon and would agree for me to be operated by him, but if I wasn't operated by my surgeon, dr shufflebargar or dr lebwohl would be my second choice. But i would be a little concern if he doesnt just focus on scoliosis in children. Without a doubt, dr lebwohl is a great sugeon to see and i would highly value his opinion. Ive only seen dr asghar and doctor lebwohl, so I dont know much of the other surgeons.

Kat3573
03-29-2013, 11:31 PM
Dr shufflebargar is also fantastic! He's been operating for over 40 years! He was my teachers second opinion 30 years ago! My friend was operated by him on November 2011. I would definitely see him. Here's a video of one of his patients: http://m.youtube.com/index?&desktop_uri=%2F#/watch?v=baQL9mVo7ZY

If the link doesn't work just look up on YouTube: MCH Ashely scoliosis.

tampamom
03-30-2013, 12:02 AM
Thank you everyone for sharing their doctor opinions. Now in regards to our initial consult, Dr. Neustadt is who we saw first. I was in such a state of shock to hear surgery I don't remember much, so I called his office back to get the information again and the nurse read me the cobb angles and fusion level: T55, L42 fusion from T5 - L4.

After a week of heavy research, mainly on this forum, I called back again to asked his nurse why didn't he do bending Xrays to determine if the lumbar was structural or not because I was very concerned about fusing to L4 for my teen. She put me on hold to double check his notes, then said they don't do bending Xrays until just before surgery and that L42 was a big curve, we'd want to fusion it, could't leave it alone!

So maybe this doctor's plan is to give you a worse case scenario, then do bending Xrays just before surgery and if you are lucky he doesn't have to go that far. Or maybe he just fuses that far to be safe from extension surgery! It is hard to say since we haven't had years of appointments to build a relationship of trust.

Can't say it too much... so glad for this forum to guide me. Thanks you guys! :)

Pooka1
03-30-2013, 08:36 AM
Thank you for calling and checking. That was important to do.

Telling patients he intends to go to L4 on a kid, and NOT telling them this translates to a pretty good chance of eventual fusion to pelvis (per Boachie), and letting the patient and parents stew about that until possibly the day before surgery, is not the kind of surgeon I would ever employ FULL STOP. We don't even know if he wouldn't still go to L4 even if he determined the lumbar was compensatory. This is a textbook example of why more than one opinion is vital. It is also a potential example of someone who CAN'T hit the balance reliably and so has to go to L4 on a false double. Just my opinion.

Pooka1
03-30-2013, 09:14 AM
She put me on hold to double check his notes, then said they don't do bending Xrays until just before surgery and that L42 was a big curve, we'd want to fusion it, could't leave it alone!

Here's some data... One-Of-Two and Two-Of-Two (i.e., my identical twins)...

Kid #1: Two days before surgery, T58*, L34*. The L34* bent out to L8*. The T curve only bent out to T23* because it was structural. On her last radiograph before being released, there was no measurement given of the L curve because it was too close to 0*. And as for the T curve, the radiologist wrote, "No residual scoliosis of the thoracic spine." This is an example of a hyper-correction which is a bit controversial at least at one point as far as I can tell. Not sure if it is still controversial.

Kid #2: About six weeks before surgery, T57*, L38*. The L38* bent out to L4*(!) - STRAIGHT. I was coaching her to give it her all she had so as to try to level L1 which she did and therefore kept the fusion ending at L1. The T curve only bent out to T31* because it was structural. Eight months after surgery, T20* and L25*. This stabilized after the first year or so to pretty much match the fused T curve Cobb of 20*. She had a false double and so has a residual small scoliosis in both curves as the best option to handling this surgically apparently. If I recall correctly, hyper-correcting a false double often results in decompensation to the left so they don't do it. There may be other reasons.

So the point is Kid #2 with the false double had a 38* lumbar which is within the noise as against your son's 42*L. She was fused in October of 2009, was stable on her final radiograph, and was released. These lumbars in false doubles appear to come to match whatever the T curve correction is. They also appear to come to match in the pure thoracic curves... the first kid's Lumbar went from 34* to "no measurement" just because the T curve was fused at "no residual scoliosis of the thoracic spine".

Pooka1
03-30-2013, 09:49 AM
I posted this is September 2012. The first bullet is the conclusion from one of the talks BY A SURGEON. It is actually better NOT to fuse the lumbar on these false doubles. Now Neustadt clearly has plenty of experience so I am at a loss about why he did what he did given the material quoted below. The only potential saving grace is that as of 2010, not fusing the lumbar on a false double is apparently still considered controversial but that may be due to the inability of surgeons to balance the fusion. I am simply saying with what I (a lay person) can find in the literature (not to be confused with "truth"), I cannot even begin to imagine allowing a surgeon to fuse my child's lumbar in these situations.


- if you only want the T curve fused in a false double, you better get someone who has mucho experience - they tend to do selective T fusions much more than less experienced surgeons who fuse well into the lumbar. (I am extremely relieved that our surgeon did a selective fusion on my one kid with a false double. He is non SRS but we were referred to him by an SRS surgeon.)

It is important to point out that selective thoracic fusion is considered the optimal treatment. So apparently, only the experienced guys are comfortable doing the optimal treatment. This situation sounds completely unacceptable because apparently it is better to NOT fuse into the lumbar on these false doubles and indeed there is a study showing the lumbars under selectively fused T curves in false doubles are stable for at least a few decades (the length of study) in all patients in the study (I don't remember how they were selected). Wait a minute... here it is:

http://journals.lww.com/spinejournal/Abstract/2012/05010/Lumbar_Curve_Is_Stable_After_Selective_Thoracic.5. aspx


Lumbar Curve Is Stable After Selective Thoracic Fusion for Adolescent Idiopathic Scoliosis: A 20-Year Follow-up

Larson, A. Noelle MD*; Fletcher, Nicholas D. MD†; Daniel, Cindy‡; Richards, B. Stephens MD‡
Collapse Box
Abstract

Study Design. A retrospective cohort study comparing long-term clinical and radiographical outcomes using selective thoracic instrumented fusion versus long instrumented fusion for the treatment of adolescent idiopathic scoliosis (AIS).

Objective. To evaluate long-term behavior of the lumbar curve in patients with AIS treated with selective thoracic fusion and to assess clinical outcome measures in this patient population compared with those patients treated with fusion in the lumbar spine.

Summary of Background Data. Selective thoracic fusion for the treatment of AIS preserves motion segments, but leaves residual lumbar deformity. Long-term results of selective fusion using segmental fixation are limited.

Methods. Nineteen patients with AIS treated with selective thoracic fusion and 9 patients treated with a long fusion returned at a mean 20 years (range, 14–24 years) postoperatively for radiographs, clinical evaluation, and outcome surveys (Short Form-12, Scoliosis Research Society-24, Spinal Appearance Questionnaire, Oswestry Disability Index, and visual analogue scale for pain and stiffness). Curve types were Lenke 1B, 1C, or 3C. All patients underwent posterior fusion with Texas Scottish Rite Hospital or Cotrel-Dubousset hook-rod instrumentation.

Results. The selective thoracic fusion group had no significant progression in the lumbar curve magnitude and no worsening of L4 obliquity to the pelvis between initial postoperative and 20-year follow-up. Mean preoperative lumbar curve magnitude (mean, 44°; range, 32–64) corrected 43% on initial postoperative films versus 38% at latest follow-up. Mean L4 obliquity to the pelvis, trunk shift, sagittal balance, and coronal balance were stable over time. Outcome scores between the 2 groups were similar. Scores in long fusion group, when compared with the selective group, were higher for 2 Scoliosis Research Society domains: self-image after surgery (P = 0.005) and function after surgery (P = 0.0006).

Conclusion. Spinal balance and correction of the lumbar curve remain stable over time in selective thoracic fusion. Those with selective fusions have outcome measures comparable with those with long fusions.



And another...

http://www.ncbi.nlm.nih.gov/pubmed/21030900


Spine (Phila Pa 1976). 2010 Nov 15;35(24):2128-33.
Predicting the outcome of selective thoracic fusion in false double major lumbar "C" cases with five- to twenty-four-year follow-up.
Chang MS, Bridwell KH, Lenke LG, Cho W, Baldus C, Auerbach JD, Crawford CH 3rd, O'Shaughnessy BA.
Source

Department of Orthopaedic Surgery, Washington University School of Medicine, St. Louis, MO 63110, USA.
Abstract
STUDY DESIGN:

Retrospective radiographic and clinical study.
OBJECTIVE:

To examine the long-term outcome of selective thoracic fusion (STF) performed for lumbar "C" modifier curves in adolescent idiopathic scoliosis.
SUMMARY OF BACKGROUND DATA:

The efficacy of STF in lumbar "C" false double major curves is controversial. We examined the 5- to 24-year outcomes of patients with "C" lumbar curves who underwent STF at a single institution to determine which factors help predict successful outcome.
METHODS:

Thirty-two patients (age, 14.8 ± 2.0 years) with a lumbar "C" modifier underwent primary STF and had minimum 5-year follow-up (mean, 6.8 years). All patients were fused distally to either T12 or L1. At latest follow-up, 18 were considered successful (group S), 2 required reoperation to accommodate worsening deformity (group R), and 12 were considered marginal outcomes (group M), as defined by >3 cm coronal imbalance (n = 5), >5 mm worsening of lumbar apical vertebra translation compared with preoperative (n = 4), >1 Nash-Moe grade worsening of lumbar apical vertebra rotation (n = 1), >10° thoracolumbar junction kyphosis which was at least 5° worse than preoperative (n = 5), and lumbar Cobb angle >5° worse than preoperative (n = 2). Clinical outcomes were determined by Scoliosis Research Society (SRS)-30 at final follow-up.
RESULTS:

Of the multiple factors considered, 2-month postoperative standing lumbar sagittal alignment was most predictive for long-term outcome (P < 0.019 by Kruskal-Wallis ANOVA). Satisfactory outcomes had statistically significantly greater T12-S1 lordosis than those that were marginal (64.8° (group S) vs. 52.0° (group M); P = 0.014) or required reoperation (64.8° [group S] vs. 38.0° [group R]; P < 0.001). Traditionally considered variables such as apical vertebra rotation, apical vertebra translation, Cobb angle magnitudes, coronal and sagittal balance, and their respective thoracic-to-lumbar ratios were not independently significant.
CONCLUSION:

Selective thoracic fusions performed for lumbar "C" modifier scoliotic deformities generally have excellent long-term radiographic and SRS-30 outcomes at 5- to 24-year follow-up. Care should be taken to ensure that overcorrection of the thoracic curve is not performed beyond the ability of the lumbar curve to compensate. Furthermore, consideration of selective thoracic fusion should not be ruled out simply because the patient may have a somewhat stiff lumbar curve based on side-bending radiographs.

Kat3573
03-30-2013, 10:31 AM
Thank you for calling and checking. That was important to do.

Telling patients he intends to go to L4 on a kid, and NOT telling them this translates to a pretty good chance of eventual fusion to pelvis (per Boachie), and letting the patient and parents stew about that until possibly the day before surgery, is not the kind of surgeon I would ever employ FULL STOP. We don't even know if he wouldn't still go to L4 even if he determined the lumbar was compensatory. This is a textbook example of why more than one opinion is vital. It is also a potential example of someone who CAN'T hit the balance reliably and so has to go to L4 on a false double. Just my opinion.

I have to agree with pooka. Same thing happens to me, but just because of my flexibility I am used from t4-l1

Pooka1
03-30-2013, 10:44 AM
I have to agree with pooka. Same thing happens to me, but just because of my flexibility I am used from t4-l1

Actually, per that second article I posted, stiff lumbars are not a reason to fuse a compensatory lumbar. So flexibility is not a determining factor.

Kat3573
03-30-2013, 02:25 PM
Actually, per that second article I posted, stiff lumbars are not a reason to fuse a compensatory lumbar. So flexibility is not a determining factor.

Whoops! Well for some reason I was not fused to L3

Pooka1
03-30-2013, 02:30 PM
Whoops! Well for some reason I was not fused to L3

What kind of curve you you have? Do you have more than one?

tampamom
03-30-2013, 03:04 PM
I am so glad you reposted the two articles on Selective Thoracis Fusion (STF) levels. It is certainly on my mind all them time. So correct me if I am misunderstanding the articles but it sounds like:

A false double is fine not to fused into the Lumbar. The key is to stay balanced. So how does a surgeon do that? During surgery do they sort of feel their way in correcting the T curve leaving room for some L curve to coexist for balance reasons?

How much effect does rotation play in the end results? Should my son's doctor notes have rotation degrees on the curves?

Lastly, I am confused about how the last article concluded that stiff lumbar is not a reason to do a long fusion, does that mean flexibility does not play a role?

How exactly is a false double determined, bending Xrays and size of curve?

tampamom
03-30-2013, 03:22 PM
Pooka1 you have some interesting data on your two girls and I can only imagine how happy you are that it all worked out. Just curious if you've given some analysis as to why kid#2 T Curve did not straighten out as much? Same surgeon right? Could it be a difference a year makes in living with a curve even if it is not progressing?

I have'n't really heard of hyper correction and am now curious about it. Now that you mention it, Dr. Hey does ask patients "how straight to do you want me to get it?" So is there a benefit to leaving a small T curve?

I guess everyone's body is different and we'll just have to trust our surgeon's judgement....

So just to confirm both your girls are post-op 3 & 4+ years and they've stabilized in the lumbar, with no progression?

Do you think boys might be more at risk for Lumbar issues when stopping at L1 and having a false double, given they tend to continue to grown more in high school and college? Does growth also cause just rotation?

It seems pretty consistent that girls growth hormones slow down after their menstrual cycle.

And thanks for all your input!

Kat3573
03-30-2013, 03:43 PM
I had one big curve in the middle of my spine, so the lumbar vertebras were tilted because of the curve

Pooka1
03-30-2013, 09:19 PM
A false double is fine not to fused into the Lumbar. The key is to stay balanced. So how does a surgeon do that? During surgery do they sort of feel their way in correcting the T curve leaving room for some L curve to coexist for balance reasons?

That is a question for the surgeon! From my reading, as far as I can tell which might be totally wrong, with false doubles, you cannot do a hyper-correction because they will decompensate (lean) left. So I assume the aim to correct the T curve as much as is "safe" and then hope the lumbar matches it. That happened in my kid and apparently usually happens. Still, my kid had some decompensation left that slowly came almost vertical. Now, 3.5 years out, she is pretty much vertical but it took most of that time.


How much effect does rotation play in the end results? Should my son's doctor notes have rotation degrees on the curves?

No idea! The surgeon can tell you this. All I can tell you is that he surgeon said Thing One with the pure thoracic was the difficult case of the two so the false double was not the most difficult between them. The false double had no obvious rotation but the pure thoracic was extremely torqued around. Maybe correcting the rotation is what the surgeon meant by being the "difficult" case.


Lastly, I am confused about how the last article concluded that stiff lumbar is not a reason to do a long fusion, does that mean flexibility does not play a role?

Apparently. It's the last line of the conclusions, "Furthermore, consideration of selective thoracic fusion should not be ruled out simply because the patient may have a somewhat stiff lumbar curve based on side-bending radiographs."


How exactly is a false double determined, bending Xrays and size of curve?

That's my understanding. If it looks like a double major but the lumbar (or thorax) bends out then it is a false double.

Pooka1
03-30-2013, 09:45 PM
Pooka1 you have some interesting data on your two girls and I can only imagine how happy you are that it all worked out. Just curious if you've given some analysis as to why kid#2 T Curve did not straighten out as much? Same surgeon right? Could it be a difference a year makes in living with a curve even if it is not progressing?

Same surgeon. The reason Thing Two was not hyper-corrected is (at least) that you can't hyper-correct false doubles because they will decompensate left. Even straightening her thorax to 20* caused a left lean for a long time. It slowly came vertical over a few years. Had she been corrected more, maybe she never would have come vertical and it would have strained the lower discs to the point of needing an extension. I have no idea. I do think that the way to avoid extension into the lumbar is to balance the fusion in all three planes so the unfused discs are carrying equal weight at all points.

Thing One had a different curve that could be hyper-corrected. Her lumbar is not measurable which is why I think the surgeon said she is not expected to ever need more back surgery for scoliosis. Those lower discs are perfectly aligned like in a normal person.


I have'n't really heard of hyper correction and am now curious about it. Now that you mention it, Dr. Hey does ask patients "how straight to do you want me to get it?" So is there a benefit to leaving a small T curve?

Well you have to ask more about this to get the straight dope. I have an opinion about this issue, though. Dr. Hey asking people how straight they want to be is just small talk. I am sure they all say "perfectly straight". Every patient wants to be perfectly straight. He does nothing per the patient but only does anything according to his professional experience. He will straighten a patient as much as is safe and not more so as to avoid decompensation and adding on and whatever that would trigger an extension.

There is a benefit to leaving a small T curve when the curve cannot be hyper-corrected. False doubles apparently cannot be hyper-corrected because they will decompensate left. Pure thoracic curves clearly can be hyper-corrected... Thing One was fused in March of 2008 and has ZERO issues. She has forgotten about scoliosis.


I guess everyone's body is different and we'll just have to trust our surgeon's judgement....

That's really the only option. I would not use a surgeon who took their cues from their patients rather than their experience base. That would be incompetent because lay people are incompetent.


So just to confirm both your girls are post-op 3 & 4+ years and they've stabilized in the lumbar, with no progression?

Actually we just passed the five year mark on Thing One (pure T) and we are at ~3.5 years on Thing Two (false double). Thing one had no change in either curve from 4 days out until she was released about two years later. Thing Two's lumbar did bounce around a bit between ~19* and ~25* and I think she was 25* when released. It stayed near the T curve mark and I assume it always will. The curve tries to balance itself it seems. That's why decades out they are not seeing problems with selective T fusion I assume.


Do you think boys might be more at risk for Lumbar issues when stopping at L1 and having a false double, given they tend to continue to grown more in high school and college? Does growth also cause just rotation?

I have no idea! The surgeon will have a feel for that. It could be an issue in boys but I tend to doubt it because the rotation is due to anterior overgrowth. That's what makes structural curves rotate and what makes them, well structural. The lumbar, not being structural, has no anterior overgrowth. The only reason compensatory curves exist is to balance structural curves. Once you correct the structural curve, the compensatory curve bounces back to match to maintain the balance. The fused spine will not grow longer but the lumbar will. Still, I don't think there is any mechanism for the lumbar to rotate or curve once the T curve is fixed. I think it will grow normally.


It seems pretty consistent that girls growth hormones slow down after their menstrual cycle.

And thanks for all your input!

Please run these questions by the surgeon. I am a lay person.

mariaf
03-30-2013, 10:42 PM
She put me on hold to double check his notes, then said they don't do bending Xrays until just before surgery and that L42 was a big curve, we'd want to fusion it, could't leave it alone!

Like Sharon stated, I too would be very uncomfortable with this approach. To wait until "just before surgery" to have this vital information (and the time to digest, discuss, research options, etc.) doesn't make sense to me.

jrnyc
03-30-2013, 11:36 PM
hmmmm...i had no surgery scheduled with Dr Lonner in NYC...but
he wanted bending X rays, which he did in his office...
it was a shock to me to discover that gravity was deluding me into
thinking i have any flexibility left...without gravity, laying down on
table, i had little to no flexibility....

i do not see any reason for any surgeon to delay bending Xrays....
doesn't make sense....

jess

mariaf
03-31-2013, 10:17 AM
Right, Jess - how could it possibly hurt to have this information sooner? There's no downside to doing a bending x-ray sooner rather than later. Makes no sense.

Pooka1
03-31-2013, 10:42 AM
Right, Jess - how could it possibly hurt to have this information sooner? There's no downside to doing a bending x-ray sooner rather than later. Makes no sense.

There's something funny here. I am not convinced he usually waits for the bending films until right before surgery on all patients. The fact that the nurse couldn't answer the question right away may mean it was strange and she needed some sort of explanation. I suspect Neustadt just assumed the lumbar was structural because of the size and because the ratio of the T to the L is not greater than 1.2. I have seen that "rule" somewhere, I think among Lenke's writings. But given that Lenke himself backed off that rule with this patient (if it was his writing), then others should damn well back off too! I'm just speculating wildly here! But something is funny.

There are some surgeons out there who will never be my surgeon FULL STOP.

rockycarm
03-31-2013, 03:52 PM
Had fusion from T9-S1 with Dr. Boachie 10 months ago. Today, no more low back pain. He is surely a gifted surgeon.

Best of Luck to you!


Tampamom,

More info

Here is a Dr Boachie interview..... Its mainly about adults but mentions what Sharon had been talking about in fusing to L4.


http://www.hss.edu/professional-conditions_adult-scoliosis-low-lumbar-degenerative-disease-spinal-stenosis.asp

If you fuse a 13-year-old to L4, 20 to 25 years later, at the most, he or she is going to have problems at L4-5 and L5-S1 levels. So I tell them to take it easy a little bit, and avoid excessive high impact, rotational sports and activities, no other things that will cause early degeneration. But if you fuse them to L1 or T12, they can do very well for the rest of their lives, provided the remaining lumbar spine is properly aligned and has not shifted.

Ed

LSKOCH5
04-22-2013, 03:32 PM
Do you think boys might be more at risk for Lumbar issues when stopping at L1 and having a false double, given they tend to continue to grown more in high school and college? Does growth also cause just rotation?

It seems pretty consistent that girls growth hormones slow down after their menstrual cycle.

And thanks for all your input!

Sharon & Linda (or anyone else with info/knowledge on this) - What are your thoughts on this question in regards to boys? Jacob was fused to L1 & as you saw in the initial xray, the lumbar curve looked to be 10* or less. However, after 3 major falls & gaining several inches more in height, his L curve is now 28*. The bottom of one of the rods came off the screw & we have been monitoring it for further movement since the end of Dec.

Pooka1
04-22-2013, 04:43 PM
Sharon (or anyone else with info/knowledge on this) - What are your thoughts on this question in regards to boys? Jacob was fused to L1 & as you saw in the initial xray, the lumbar curve looked to be 10* or less. However, after 3 major falls & gaining several inches more in height, his L curve is now 28*. The bottom of one of the rods came off the screw & we have been monitoring it for further movement since the end of Dec.

As I responded to tampamom, this is really a question for an experienced surgeon.

Given that most of these patients have no significant change in the lumbar over decades, I am a little surprised to hear Jacob's lumbar has gone from ~10 to 28*, falls or not. Did the thoracic change? As I recall, he was hyper-corrected to <10*T, no? It sounds like he might have grown before he fused. My daughter's thoracic "slipped" a little from 16*T a few days post-op to the final angle of 20*T post fusion although that is still in the noise.

There are esoteric issues about selecting the correct lower instrumented vertebrae and if you don't do this correctly, you can get adding on or whatever. I don't think it means that the lumbar is stuctural. But I don't think adding on is what you are seeing.

What were his L measurements before the falls? So now does he still have a virtually straight T spine and a 28* L? There is no reason the growth in the lumbar should not be normally straight given the straight T spine. Is there rotation? I bet not!

Can you post the radiograph? It's all pretty strange because the L was clearly compensatory (since it came straight) and I don't see how it could possibly magically become structural after the T curve was hyper-corrected. I think older people do have single T curves becoming double majors but that is because the curve was untreated for so long. That is not the case with your son.

My best guess is he is curving away from the pain and once that settles, the lumbar curve will go away. Dr. Hey wrote about a case where a guy had a functional scoliosis from bending away from the exquisite pain associated with a badly herniated disc. If Jacob was in one-sided pain for a long time, that might explain a functional curve of 28* perhaps. I really don't know.

Also, you can check those two papers I posted to see if there are males in the study groups.

I suggest asking the surgeon. Did he comment about the increase in the L curve?

Good luck.

Pooka1
04-22-2013, 04:47 PM
Sharon & Linda (or anyone else with info/knowledge on this) - What are your thoughts on this question in regards to boys? Jacob was fused to L1 & as you saw in the initial xray, the lumbar curve looked to be 10* or less. However, after 3 major falls & gaining several inches more in height, his L curve is now 28*. The bottom of one of the rods came off the screw & we have been monitoring it for further movement since the end of Dec.

I forget what type of T curve Jacob had? Wasn't it a pure T curve and not a false double? If so then this is even stranger!

Pooka1
04-22-2013, 04:54 PM
I forget what type of T curve Jacob had? Wasn't it a pure T curve and not a false double? If so then this is even stranger!

Okay I found it. Jacob's curve looks very similar to Thing One's curve which was straight thoracic to my knowledge.

Now I have read where selection of the lowest instrumented vertebra is critical in this type of curve if in fact I am correct that our kids have this type of curve. Adding on is a concern if the wrong vertebra is selected but I think adding on just sort of lengthens the original curve as opposed to increasing a compensatory curve. Not sure.

Is the Lumbar curving in the same or opposite way as the residual T curve?

I AM NOT A SURGEON AND DON'T HAVE A GOOD HANDLE ON ANY OF THIS!

I just wanted to point that out again!

Pooka1
04-22-2013, 05:48 PM
You might ask your surgeon about this...

http://www.ncbi.nlm.nih.gov/pubmed/22322370

Adding on doesn't change the direction of the compensatory curve as I suggested earlier. It is the lengthening of the instrumented curve below (or perhaps above) the fused levels because the fusion length is too short.

Is the curve curving right under the bottom of the fusion like this...

http://www.healio.com/orthopedics/pediatrics/news/print/orthopaedics-today-europe/%7B9ed2b6d6-e6e9-4f6e-b518-7255d80063c6%7D/lowest-instrumented-vertebra-selection-linked-to-distal-adding-on-inlenke-1a-scoliosis

LSKOCH5
04-23-2013, 09:03 AM
Sharon, thanks for your response. The L curve is the opposite, just as in the link to the Lenke 1A that you posted. It is still considered compensatory & is being closely monitored; the surgeon does not believe there will be any further increase. The T is straight & beautiful. I had to look up your term "adding on" but am at a loss as to "false double." And the study group that I saw was purely females. Jacob is still growing, having caught up w me last fall & having surpassed me already this year. Still having shoulder issues but pain goes away every time he swims as well as usually when works out.

Pooka1
04-23-2013, 10:01 AM
I don't think Jacob has a false double.

A false double is an S curve that looks like a double major (2 structural curves) except one of the curves is not structural. So it is a "false" double major curve.

That's my understanding.