The "Art" of Dr. Lenke

[Pooka1]

I will try again tomorrow. And probably feel stupid for asking.

Please don't feel stupid. There is nothing stupid about your approach or follow through. You are an excellent advocate for your daughter.

In re the fast-moving curve and joint dislocations, you might want to get an evaluation for Marfan syndrome. These things don't mean she has the syndrome; They are merely consistent with it. The point of ruling it in or out is to know whether you need to do echocardiograms for aortic dissection which is the reason why people with Marfan had shortened lifespans.

The good news is all this is fixable, the scoliosis, the aortic enlargement, etc., etc. and these people have normal lifespans if you catch it in time.

Here is a list of signs/symptoms...

http://www.marfan.org/marfan/2320/Features/

Good luck.

[Kelsey's Mom]

Thanks.

I do already know the scheduling nurse. But, we are asked not to contact them with questions about scheduling. My real questions at this time are more about monitoring. She is not braced, of course, and the first doctor indicated she would need to be monitored to insure nothing "wonky" happened with her spine. Her fusion will be from t4-l4, so will be a significant fusion. I really have too many questions, I guess. I just want to make sure she isn't in any danger.

Oh, btw, the nurse said she was available for any and all questions (except the surgery date), I'm just not having good luck with getting a call back.

I will try again tomorrow. And probably feel stupid for asking.

[LindaRacine]

Hi Lisa...

Since it's already been decided that Kelsey will have surgery, there really is no rush. Teens are often scheduled for when it's convenient for their school schedule.

With that said, I think it would be good to call again. Perhaps someone knows the name of the person who schedules Dr. Lenke's surgery.

Regards,
Linda

[Kelsey's Mom]

Timing? Monitoring?

This may be off topic. If so, I apologize.

First, I'd like to say that the pictures are amazing and great to see. We saw Dr. Lenke in January and are still waiting for a scheduled surgery date. I think that the waiting wouldn't be so scary if we had a doctor that was monitoring Kelsey. Shouldn't she be seen while we are waiting?

Between August, when her initial x-rays revealed curves of 58 deg, and January, when they took the second set in St. Louis, she progressed to 67 deg T and 70 deg L. I thought that was a pretty major progression, but was encouraged by Dr. Lenke's attitude and manner. Also, as she is going to be a teaching case, and he said to set her up between 3 and 5 months, Spring to Early Summer, I did not ask about if we would have any additional appointments.

However, 9 months later, we are no closer to a surgery date. We have not seen a doctor since and I am afraid that we have fallen through the cracks. Kelsey's rotation has continued to the point that it appears her ribs are sitting on her hip bone. She now has to work at standing upright, to the point that when I stood to close too her the other day she informed me that she couldn't maintain her balance with me so close. When hugging her to my side, I dislocated her arm a couple of weeks ago. And she has begun to complain about something "stabbing" her in the back. These are added to the continued lack of sleep, the difficulty with breathing, and occasional chest pain.

I've called and left a message to let them know I'm concerned and ask about what I should do since we have NO local doctors, but have been waiting for several weeks for a call back on this.

Is this typical? Sorry to be such a whiner. I know I have to call again tomorrow and try to simply talk to someone at the front desk, I assume. But, wanted to hear from others who might be able to tell me if these are just common occurrences and if any of you were monitored while you waited for surgery. (Our initial doctor said that if we postponed beyond 3 months, he would recommend close monitoring... )

Any ideas, thoughts, suggestions, or just "you're being silly" words would be so appreciated.

Thanks,

Lisa

[Back-out]

Hi Sherie
Yes, indeed I concur. Your daughters pics are incredible! And what a lovely young lady she is too.

Hoping you see this, I have one big question, though. On the site with the pix, you say she has two STEEL (emphasis mine) rods and X# screws..

Did you mean titanium perchance?

I never heard of steel rods for deformity correction.

Looking from then to now, I'm also curious about how her pain is these days and also how her scar has changed over time.

Thanks!!

[RitaR]

Not to ask a silly question here - but what does "too risky" mean? I would think if it needs to be done, it needs to be done, all with good reasons I'm sure. I was just curious. Dr. Lenke said when I saw him last July he knew exactly what had to be done and knew right away he could achieve excellent improvement significantly. I was very impressed right away when I heard that.

[joyfull]

Sharon,
I thought you would like that one.


Gotta love Dr Bradford...

Performing a circumferential VCR approach for severe, rigid spinal deformity was first described by Bradford in the late 1980s.(1) He was the first to describe the use of a circumferential vertebral column resection coupled with concave rib osteotomies, convex thoracoplasty, and segmental spinal instrumentation with fusion in 13 patients with severe structural spinal deformities. In 1997, he and O. Boachie-Adjei (2) further expanded on Bradford's original case series by which they reported on 16 patients undergoing a circumferential VCR. Excellent deformity correction and rebalancing of the trunk was reported with few serious complications. More recently, Suk et al reported on a posterior-only approach with a VCR for fixed lumbar spinal deformities (3), as well as for severe, rigid scoliosis. (4,5) They reported excellent surgical correction with minimal long-term complications for lumbar deformities resected around the cauda equina region, with similar results for the thoracic scoliosis patients except for one permanent paraplegia postoperative. To date, no North American clinical series has reported on this technique for the treatment of primarily thoracic-based, severe pediatric and adult spinal deformities

Where the heck has Brad been? Poor guy is probably freezing in Canada.

Ed

I was surprised to see Dr. Boachie's name here. As far as I know, he doesn't routinely perform this and did not even mention it for my 90 degree curve, but wanted to do anterior/posterior. Perhaps he thinks it too risky. It seems that Dr. Lenke caught the ball and ran with it.

[jrnyc]

Thanks, guys....I agree that i need to hear all possible opinions & options..after i see dr anand the end of this month, i am kinda curious to see if anyone..dr lonner or dr lenke, (if i can get in for a consult)..thinks i could be a "reach around" kinda case..cause the fusion i am told by all doctors that i need is L4-S1 & T11-sacrum...my fusion supposedly would need to start where some people on forum have their fusion end! i know how many people say they dont want to have to go below L4, etc...so i dont know that i could actually have minimally invasive or a "reach around" with incision on one side of body only...up to going to dr anand jan 27, every surgeon has told me "no" to minimally invasive for my case....
but i want to thank this forum & all on it..until i found it, i didnt think i had any options other than surgery or no surgery.....so "Thank you!."

we will see what we will see...

jess

[Sherie]

Okay I think I see what you are saying. I don't actually know what procedure(s) Sheena had but I assumed a "regular" posterior fusion. Her curve was large but not as large as some of these other cases.



I agree with this. It's important to feel like you understand the spectrum of opinion out there. There is a wide range of opinion on some cases (not on others) and it can be confusing. A good goal is not not let the different opinions blow your mind... they will converge on the right answer hopefully.

It's easier when there is no choice it seems. At least it seems that way... I have never been in a situation where there was some choice with either kid.

Yes, Sheena had a regular posterior fusion.

Dr. Lenke gets some extreme cases, there is no telling what these 3 patients conditions were prior to surgery. I specifically asked him about complication rates for AIS, it was extremely low so I'm pretty sure whatever Dr. Lonner was referring to wasn't typical posterior fusion.

[Sherie]

Hi Sherie

Those are some nice looking post x-rays on Sheena. It almost looks like her lower is larger than 62, and looks like Dr Lenke took the angle off her plumb line. Without the x-ray markings, it looks like she was about 75 plus degrees prior to surgery. ??? Anyway, looks pretty good. Hope she is well.

I just cannot get over his wait time! Sheena waited 8 months, Rita 12 months, and now Joy for summer of 2011 is 18 months. Might be best to get on his waiting list, even without scoliosis.
Just in case. LOL


Ed

I've often thought it appeared larger than other 60ish curves, but his measurements were right in line with the other 3 surgeons we took her to.
But, thanks she's doing very well now.

LOL, no kidding, his waiting time is crazy, but he does get cancellations and will try to fill them. If you're flexible with your time (we were not), then you can possibly get in earlier.

[Pooka1]

Sharon,
I thought you would like that one.

Well to tell you the truth, when you said you found a French site with pictures, my mind wandered just a tad...

Gotta love Dr Bradford...

Performing a circumferential VCR approach for severe, rigid spinal deformity was first described by Bradford in the late 1980s.(1) He was the first to describe the use of a circumferential vertebral column resection coupled with concave rib osteotomies, convex thoracoplasty, and segmental spinal instrumentation with fusion in 13 patients with severe structural spinal deformities. In 1997, he and O. Boachie-Adjei (2) further expanded on Bradford's original case series by which they reported on 16 patients undergoing a circumferential VCR. Excellent deformity correction and rebalancing of the trunk was reported with few serious complications. More recently, Suk et al reported on a posterior-only approach with a VCR for fixed lumbar spinal deformities (3), as well as for severe, rigid scoliosis. (4,5) They reported excellent surgical correction with minimal long-term complications for lumbar deformities resected around the cauda equina region, with similar results for the thoracic scoliosis patients except for one permanent paraplegia postoperative. To date, no North American clinical series has reported on this technique for the treatment of primarily thoracic-based, severe pediatric and adult spinal deformities

Where the heck has Brad been? Poor guy is probably freezing in Canada.

Ed

You know, it's easy to think the average pediatric case (adults seem more complex) is off the hook complicated to treat until you read about some of these truly difficult cases. That isn't to say these average cases are walks in the park... my first kid wasn't for some reason per the surgeon although she "only" had a 58* T curve. But these surgeons are even more amazing than I thought.

In re Qikdraw, I was thinking about him recently. I think about him every time something reminds me of what a kid thinks going through the surgery. I hope he posts again.

[Pooka1]

Sharon, I'm not sure what procedure Dr. Lonner referred to, but when I told him about the amazing corrections Dr. Lenke has gotten such as the correction I read about here in a woman in her 50's who went from 95 degrees to 35 degrees, that was his comment.

Okay I think I see what you are saying. I don't actually know what procedure(s) Sheena had but I assumed a "regular" posterior fusion. Her curve was large but not as large as some of these other cases.

Jess, I think you need to see as many doctors as you like until you feel absolutely confident. It is a very major decision. Good luck in CA

I agree with this. It's important to feel like you understand the spectrum of opinion out there. There is a wide range of opinion on some cases (not on others) and it can be confusing. A good goal is not not let the different opinions blow your mind... they will converge on the right answer hopefully.

It's easier when there is no choice it seems. At least it seems that way... I have never been in a situation where there was some choice with either kid.

[titaniumed]

Sharon,
I thought you would like that one.


Gotta love Dr Bradford...

Performing a circumferential VCR approach for severe, rigid spinal deformity was first described by Bradford in the late 1980s.(1) He was the first to describe the use of a circumferential vertebral column resection coupled with concave rib osteotomies, convex thoracoplasty, and segmental spinal instrumentation with fusion in 13 patients with severe structural spinal deformities. In 1997, he and O. Boachie-Adjei (2) further expanded on Bradford's original case series by which they reported on 16 patients undergoing a circumferential VCR. Excellent deformity correction and rebalancing of the trunk was reported with few serious complications. More recently, Suk et al reported on a posterior-only approach with a VCR for fixed lumbar spinal deformities (3), as well as for severe, rigid scoliosis. (4,5) They reported excellent surgical correction with minimal long-term complications for lumbar deformities resected around the cauda equina region, with similar results for the thoracic scoliosis patients except for one permanent paraplegia postoperative. To date, no North American clinical series has reported on this technique for the treatment of primarily thoracic-based, severe pediatric and adult spinal deformities

Where the heck has Brad been? Poor guy is probably freezing in Canada.

Ed

[Pooka1]

Sharon

I believe this is it. When curves get really bad.

http://www.spineuniverse.com/display...ticle2053.html

http://www.spineuniverse.com/display...ticle1808.html

http://www.spinal-deformity-surgeon.com/vcr-paper.html


The bonus link!
Great French site with pics
http://images.google.com/imgres?imgu...a%3DN%26um%3D1

Ed

Oh la la! I'm going to study that French site.

And that Lenke guy is shockingly good at what he does.

[joyfull]

Sharon, I'm not sure what procedure Dr. Lonner referred to, but when I told him about the amazing corrections Dr. Lenke has gotten such as the correction I read about here in a woman in her 50's who went from 95 degrees to 35 degrees, that was his comment.

Jess, I think you need to see as many doctors as you like until you feel absolutely confident. It is a very major decision. Good luck in CA