The "Art" of Dr. Lenke

[Sherie]

I've never publicly posted my daughter's xrays or photos before but decided to because I wanted to sing my praises to Dr. Lenke. I think her outcome is amazing. You can view them in the link in my sig. As Sharon (Pooka) pointed out, this is artistry when done well. He's a genius at his craft. He's also a prolific researcher and teacher and soon to be president of the SRS.

I would highly recommend him if you have the means to and the time. I understand his waiting list is now even longer than our 8 month wait. We traveled from Houston to St. Louis 5 times and believe me, not without our share of problems but was well worth it. After much consideration, I figured picking the right surgeon was the most critical factor and would outweigh any inconveniences we had to go through in the short term.

Good luck to all having surgery and Happy New Years.:)

[Pooka1]

I understand his waiting list is now even longer than our 8 month wait.

Since our surgeon only does pediatric, I am thinking of putting both my daughters on Lenke's waiting list now just in case they ever need a revision. :D

I would not be surprised if he showed your daughter's radiographs at his talks as an example of how even large, rotated curves can be corrected to normal in all planes with the new instrumentation.

[RitaR]

Hello Sherie,
I am scheduled for surgery by Dr. Lenke in July. I go on May 26th for my preop appt. I have a 90+ degree curve and am in tremendous pain all day every day of my life. I have significantly decreased lung capacity along with numbness, tingling and lots of muscle spasms. I saw Dr. Lenke for the first time last July and he diagnosed me immediately and told me exactly what he needed to do to achieve significant improvement in my curve. He was very conscientious, professional and very compassionate and understanding of my discomfort. His office staff were very understanding. Although the wait has been way more to endure that I ever counted on I have never considered having this done by anyone else. Dr. Lenke came highly recommended by my orthopedic surgeon and after I saw Dr. Lenke the one time I knew right away that he was the dr I wanted to fix this horrible curve I have that seems to be ever increasing and causing me such pain. I can't tell you how much I enjoy hearing all these wonderful things about Dr. Lenke and I enjoyed your pictures. They are wonderful pictures. I cannot even imagine ever being that straight after being this curved for so many years. I never dreamed I'd be in such pain now. I envy those who do not experience any pain at all. I am so glad you had a good experience with Dr. Lenke. If you have any tidbits of information I need to know about your experience I would appreciate it. How long your hospital stay was, amount of pain you had postop, etc. I am, of course, dreading my hosp experience altogether, but I am very excited to know that I will not have to be in this horrible pain forever.

[Sherie]

Since our surgeon only does pediatric, I am thinking of putting both my daughters on Lenke's waiting list now just in case they ever need a revision. :D

I would not be surprised if he showed your daughter's radiographs at his talks as an example of how even large, rotated curves can be corrected to normal in all planes with the new instrumentation.

Hopefully, with the new generation of hardware, that won't happen but it never hurts to have a backup plan.

Actually, he wanted to film her surgery for educational purposes, which I was all for but my husband was against so I didn't push it. The whole situation was already too stressful for us to argue over that.

[Sherie]

Hi Rita

I'm so sorry to hear you're suffering so much. My daughter was having a lot of discomfort and pain in her lumbar area so I can only imagine what you must be going through with such a large curve. I hope surgery will help you.

Dr. Lenke told me this about surgery and pain relief:
80% of patients will have an improvement in pain
10% will have no improvement
10% will get worse

Fortunately, my daughter was in the 80%. I'm sure her age has much to do with that. She was 15 at the time of surgery.

Sheena was in the children's hospital, so can't help you much there except to say that it was top notch. Everyone who came to see Sheena was excellent. My one complaint was that there was a separate pain management team. They could have handled her transition from morphine to orals better, even Dr. Lenke was upset over that and was on the verge of taking control when it finally worked out.

She was in for 8 days, we stayed an extra night in the hotel and then flew home on Thanksgiving Day. That was the best thing we did, there were only 17 people on our flight so Sheena had an entire row of seats to lay on, otherwise, I don't think she could have made it. I would have gladly bought 2 more seats, but did not know that she couldn't handle it. We lucked out. I think since your an adult, you'll probably plan to stay longer in town than we did.

[jrnyc]

the more that i read about dr lenke...the more i think maybe i should be flying to st louis...is that missouri? maybe instead of /or after i fly to CA...his work sounds really impressive...& it seems to impress other scoli surgeons, too!

i am going to look into this...i understand that he has a looooonng waiting time...but i can wait...i have been running around in a circle about the surgery decision for over a year now....what's a little more waiting!

happy new year, everybody...
jess

[RitaR]

Hello All,
I can tell you - as long as I have waited for Dr. Lenke, saw him one time and I was IMPRESSED! He is worth the wait - of course, I'm still waiting long time till July for my surgery, but I am confident I have the best dr behind me! And, these posts only make my confidence even higher. Of course, while I sit here New Years Day in my chair, on the heat pad and having taken two pain pills for the day already (!) it is always nice to hear how wonderful your doctor is. And, I trust my orthopedic doctor locally also in that he's saying he wants no one else to do my surgery except Dr. Lenke. I have no reason to go anywhere else. But, keep all the good thoughts coming my way. I will love hearing them for sure....

[leahdragonfly]

Hi Sherie,

Thanks for sharing the photos--your daughter's back looks beautiful. The before and after are truly amazing. One interesting thing I notice about your daughter's back is there is a screw on each side on every single level, which is maybe why he can get such an outstanding result, I am not sure. I have seen a number of other post-op x-rays that showed more screws on one side or the other, sometimes with just a few screws on one side. I was never sure why this was.

I'm glad things turned out so well for your family. Happy New Year.

[JenniferG]

Your daughter's pics are just stunning. Fantastic to see. What an incredible talking point for the rest of her life!

I have to agree, getting the best surgeon is the most critical part of this journey. I am sure there are many good ones out there but it leaves me wondering what happens to the up and coming ones - where do they get the experience if we are all lining up for the best and most experienced surgeons?

[Sherie]

the more that i read about dr lenke...the more i think maybe i should be flying to st louis...is that missouri? maybe instead of /or after i fly to CA...his work sounds really impressive...& it seems to impress other scoli surgeons, too!

i am going to look into this...i understand that he has a looooonng waiting time...but i can wait...i have been running around in a circle about the surgery decision for over a year now....what's a little more waiting!

happy new year, everybody...
jess

Yes, he's in Missouri. If you're already willing to travel, you may want to consider him. He has a good website if you haven't looked at it yet. Just google Lawrence Lenke.

[Sherie]

Hi Sherie,

Thanks for sharing the photos--your daughter's back looks beautiful. The before and after are truly amazing. One interesting thing I notice about your daughter's back is there is a screw on each side on every single level, which is maybe why he can get such an outstanding result, I am not sure. I have seen a number of other post-op x-rays that showed more screws on one side or the other, sometimes with just a few screws on one side. I was never sure why this was.

I'm glad things turned out so well for your family. Happy New Year.

Thank you, it was a relief to have such a good outcome. We specifically asked about the number of screws before surgery, I think he typically uses screws at all levels for better correction and stability but it also results in more blood loss. Obviously, opinion varies widely on this topic and must be more of a personal preference.

[Sherie]

Your daughter's pics are just stunning. Fantastic to see. What an incredible talking point for the rest of her life!

I have to agree, getting the best surgeon is the most critical part of this journey. I am sure there are many good ones out there but it leaves me wondering what happens to the up and coming ones - where do they get the experience if we are all lining up for the best and most experienced surgeons?

I thought about that too. I know a lot of surgeons work at Shriner's or TSRH, not to say they're practicing because these are already highly trained surgeons, but they do gain a lot of experience and it's wonderful for people who couldn't afford the surgery otherwise. I also think some patients don't necessarily get multiple opinions and are happy with the first surgeon they talk to so I don't think it's really a problem. I'm sure we could have gotten great results from other surgeons, too.

[joyfull]

I have an appointment to see Dr. Lenke on March 24th. I know that he is scheduling surgery now for summer of 2011, and I was hoping to have the surgery this summer (I am a teacher) but I am willing to wait if need be.

Dr. Lonner told me that what Dr. Lenke does is "the epitome of what we do" but he told me he considered it too risky for me. He quoted a study where out of 35 children who had the procedure, 3 had "permanent neurological damage." I will definitely ask Dr.Lenke about this.

I would think the results of the study would vary according to the skill of the surgeon.

I am 57 with a 90 degree thoracic curve, but with no pain! I am looking for the best cosmetic correction I can get, as well as stopping the progression.

I will post after my visit in March. Thanks for sharing so much info. Sherie, Your daughter's correction is amazing! All the best, Joy

[Pooka1]

Dr. Lonner told me that what Dr. Lenke does is "the epitome of what we do" but he told me he considered it too risky for me. He quoted a study where out of 35 children who had the procedure, 3 had "permanent neurological damage." I will definitely ask Dr.Lenke about this.


What procedure is he talking about?

[jrnyc]

Hi Sharon
not sure if dr lonner was referring to the "reach around" thing so 2 incisions on 2 different sides are not needed...or if it is something else...

i love dr lonner...he has always been my favorite scoli surgeon-person...he has followed me for 5 years, & i expect to go to see him after CA....really want to know what he thinks, cause i've always been told that less invasive isnt for me with my low lumbar curve...

am thinking of a consult with dr lenke..i realize it could take a year just to get in...after seeing other doctors..i know it sounds like i am shopping & just putting off the fusion..BUT..it is so permanent a thing (yeah, obvious, but mind blowing to me) that i just dont want to do it until/unless i feel sure...& the less invasive the better...fusion to the pelvis freaks me...lots of people on forum tell me it is not as bad as it sounds...BUT...it still freaks me..& hearing about several people on this forum doing whatever they can to AVOID fusion to pelvis adds to the freak!!

so..long story short...off to CA i go jan 25th (just booked)..anyone have any hotel suggestions?

thanks...happy new year, all....
jess

[titaniumed]

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

Sharon

Without digging, I would suspect that the procedure has to do with the "wedging" of the vert we get with large thoracic curves. I had one that was practically a triangle, and they had to skip a screw on that level. Just a hunch.

Jess

Just wondering what Dr Lonner thinks about Dr Anands procedure? Does he know you are flying out for a consult?

On the hotel, I know one thing, I will never stay at a motel 6 again. Its still only worth $6 nite, and that's with the complimentary coffee and doughnuts. What a depressing place.

If you do not book your rooms, all your options are open. I personally like to wing it, just in case I want to travel elsewhere, like up the coast, or down to San Diego. The farther you are from downtown LA, the cheaper it will be.
Ed

[jrnyc]

Hey Ed
nope, dont plan on talking to dr lonner til after i see dr anand...fly out jan 25, back the 28th...wanna stay somewhere semi-nice...no motel 6's!

i am going to contact dr lenke monday..just to see how long it could take to get in just for a consult appt.......the more i read, the more i think that maybe, just maybe, that is where i should be looking....
checked his website, still cant figure out whether they take my insurance, so that is another reason to call monday!

however..a big however...how could it work if one had surgery with dr lenke but lives in the northeast? my geography isnt too good, but sounds like that would be quite a trip back & forth for check-ups!! :)

i looked at the photos on his website...felt lucky compared to some of the extreme curves! one person was bent over sideways! i think i actually resemble one or two as far as my curves are concerned...

hope your new year was/is a happy one...
jess

[Pooka1]

Sharon

Without digging, I would suspect that the procedure has to do with the "wedging" of the vert we get with large thoracic curves. I had one that was practically a triangle, and they had to skip a screw on that level. Just a hunch.

Yes I agree it has to be something with very high angle curves because that permanent neuro injury rate is not that quoted for posterior spinal fusion and is especially not that for posterior spinal fusion plus real time neuro monitoring.

That's why I asked.

It is my understanding that with the real time monitoring, the rate of permanent neuro injury is very, very small because they realize that something is happening in enough time to stop whatever they were doing and even abandon the procedure if necessary to try again another day.

This is just another reason to not let the curve get too big.

And in re screws, my one kid has two screws at almost every level but the other kids has about half the screws on one side compared to the other. It might have to do with fixing the rotation... the kid with more screws was way more rotated. Who knows. Anyway, screws, rods, etc. are completely irrelevant after the fusion occurs and can come out if necessary.

[Pooka1]

Hi Sharon
not sure if dr lonner was referring to the "reach around" thing so 2 incisions on 2 different sides are not needed...or if it is something else...


Almost missed this post for some reason...

That could be but I thought the reference was to what Sheena had done. I'm probably confused.

Now I am curious about what procedure 35 kids had such that 3 had a permanent neuro injury. That would be something to avoid it seems!

[titaniumed]

Sharon

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

http://www.spineuniverse.com/displayarticle.php/article2053.html

http://www.spineuniverse.com/displayarticle.php/article1808.html

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


The bonus link!
Great French site with pics
http://images.google.com/imgres?imgurl=http://www.maitrise-orthop.com/corpusmaitri/orthopaedic/mo58_spine_fracture/images/fig2.jpeg&imgrefurl=http://www.maitrise-orthop.com/corpusmaitri/orthopaedic/mo58_spine_fracture/mo58_spine_fractures.shtml&usg=__v-A6oLxUBFZ0SdwdfvPOl8Jucek=&h=309&w=474&sz=24&hl=en&start=11&um=1&tbnid=x20x0_hk52LouM:&tbnh=84&tbnw=129&prev=/images%3Fq%3Dvertebral%2Bcolumn%2Bresection%26hl%3 Den%26sa%3DN%26um%3D1

Ed

[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

[Pooka1]

Sharon

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

http://www.spineuniverse.com/displayarticle.php/article2053.html

http://www.spineuniverse.com/displayarticle.php/article1808.html

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


The bonus link!
Great French site with pics
http://images.google.com/imgres?imgurl=http://www.maitrise-orthop.com/corpusmaitri/orthopaedic/mo58_spine_fracture/images/fig2.jpeg&imgrefurl=http://www.maitrise-orthop.com/corpusmaitri/orthopaedic/mo58_spine_fracture/mo58_spine_fractures.shtml&usg=__v-A6oLxUBFZ0SdwdfvPOl8Jucek=&h=309&w=474&sz=24&hl=en&start=11&um=1&tbnid=x20x0_hk52LouM:&tbnh=84&tbnw=129&prev=/images%3Fq%3Dvertebral%2Bcolumn%2Bresection%26hl%3 Den%26sa%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.

[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'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.

[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... :D



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.

[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.

[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.

[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

[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.

[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.

[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!!

[Kelsey's Mom]

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

[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]

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.

[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.

[leahdragonfly]

Dear Kelsey's Mom,

I am so sorry this is happening to you and your daughter, and I am sure it is made all the worse by not getting a call back. I would politely but firmly call again today with your concerns. Maybe they will want her to have another x-ray, maybe not. But I agree if it was my daughter, I would want someone to take a look at her after all this time. Please don't feel stupid--you are her Mom, and her greatest advocate. Persist!

I know that AIS surgery is no emergency, but I have to think that the surgery gets more complicated at some point as the curve get more advanced. Dr Lenke has a wonderful pediatric partner, Dr Luhmann, who works out of Wash U as well as Shriners St Louis. Dr Luhmann did my young daughter's VBS (stapling) surgery in May, and I love him. It might be worth at least an inquiry about seeing him.

Take care, and please do let us know how things are going. The waiting is without a doubt the worst part.

[LindaRacine]

Hi Lisa...

I would go on the assumption that something has slipped through the cracks.

Regards,
Linda

[jrnyc]

ditto to all.....
i thought of the same comments last nite...but feared we are supposed to "worship" Dr Lenke and not criticize him...many speak of him in such a way...
sorry...but i feel that is the truth!!!!!
i believe that no surgeon/doctor should be worshiped...no matter how good...none are infallible...they are humans...with great talent...but humans just the same!

jess

[Kelsey's Mom]

Oh, I don't worship any doctor. But, I do have a great deal of respect for Dr. Lenke. He is very talented.

I don't think this is his fault. The truth is that, unfortunately, he is very busy and occasionally, I would guess, people slip through the cracks. I've been trying to let the process work for me and getting more and more nervous at the same time. I could probably take some of the blame for not being more persistent.

I didn't get to make the call today, but have my notebook ready so that I can make the call I need to tomorrow before I go to work.

I'm still nervous. But, at least I know that I'm not just being a pushy, worried mom. (Though I will admit to both of those and a lot more.)

Thanks for the comments. It has encouraged me that I'm not alone.

[jrnyc]

hi Kelsey's Mom
sorry...i wasn't referring to you...but to a few on forum who write about Lenke as if he really should be worshiped...least that's how it sounds!

as a social worker, and before that, a special ed teacher (and evaluator), i know that often, if a child doesnt have that advocate, things just dont happen...so you have every right...to do whatever it takes!

but i can tell that you already know that :)

best of luck on the phone...
jess

[Sherie]

Hi Lisa

Sorry to hear you're having these kinds of problems. When we went for the initial consult, we scheduled surgery the same day. I don't know if you're in touch with Kathy, his nurse, but that's who I communicated with about everything. I would not hesitate to contact her about the surgery, I also agree that you've fallen through the cracks and while it's not an emergency, I don't think I'd want to see the progression continue. You can also ask to be put on a waiting list for cancellations.

I will send you Kathy's email in PM.

[Kelsey's Mom]

Thank you so much, Sherrie.

[Back-out]

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.
NOBODY's whining when it comes to their children.

That's #1.

After that, as it's been said, assume you've fallen through the cracks, etc.
I can add one thing based on my early contact with his office. They told me he was assuming the Presidency of SRS in September and that he'd be beginning a LOT of new (time-consuming) responsibilities then.

Also that after this point he'd have many unpredictable events coming up connected with this "new job" and that surgeries might be postponed on that account. In fact, one of our members had her surgery postponed for this reason. I'd assume that they're pretty frantic trying to schedule and reschedule his clinical load starting now.

Does NOT mean you shouldn't keep after them about your daughter! Those commenting above are among the most medically knowledgeable on board here. Her symptoms sound like ones that most definitely require attention. What a great idea to get in touch with that pediatric expert.

Best to both of you - and admiration for the "Mom" job you're doing. I really don't know how the parents do it. It's so much harder for our kids to be in pain than to bear it ourselves. Also, if you need it, reinforcement about your sense of when your daughter needs you to get help for her.

Do NOT hesitate following through on your instincts in this regard. They must exist, but I've never yet (you, in spades) "met" a single mother or father online here who struck me as out of line in their concern for their children -- but MANY who worried they were!

Trust your gut.

Amanda

[Confusedmom]

Hi there,

If you are still having trouble getting a call back, I would ask the receptionist for the nurses (Kathy's?) email address. If you email her with your concerns, she will probably take it directly to Dr. Lenke. Being a paranoid parent myself, I would DEMAND attention right away. Even if he cannot schedule surgery immediately, maybe he could squeeze in a consult appointment or let you see Dr. Bridwell, just to make sure nothing is "getting wonky." If you do not get a response within a week, I'd start talking to other excellent surgeons in nearby areas (just for a consult, you could still have surgery with Lenke). Chicago can't be too far away!

Evelyn

[Sherie]

Sorry, did not see this until today. Been really busy lately.


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


Thank you, that's very kind. She's a lovely young lady inside and out.


Hi Sherie
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.


I meant stainless steel, I guess I was too lazy to type the entire word out. :)



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!!

She occasionally has back pain. The last time (last month) was preceded by some type of minor illness. She said she wasn't feeling well, then her back started hurting, unfortunately, the back pain outlasted the unwellness by several weeks. I don't know why it lasted so long but it doesn't happen often now days. Prior to surgery she had a lot of discomfort and pain on a daily basis so surgery has had a very positive outcome for her.

Best wishes to you!

[Kelsey's Mom]

Just got the letter this evening, dated 09/29.

Surgery is scheduled for 11/30/2010. I cried. Wow! I'm excited and relieved, and now confused by all the other feelings that just hit me.

Thank you to everyone for all the words of encouragement.

[Sherie]

That's great news! Sheena's surgery was scheduled the week before Thanksgiving break. It works out well because Kelsey will be able to have the Christmas break off, it's possible she'll be ready to go back when school starts in Jan.

[Kelsey's Mom]

It should work out nicely. Did you stay home at Christmas? We have no idea if she'll feel up to all the activities. Her birthday is December 17, as well.

Now! About blood banking... I guess I need to contact the Red Cross ASAP? I will call tomorrow and see if they can give me some guidance in this.

I wonder if I'll get a call back on my phone call from Friday, now? I hope so, I still have lots of questions!! They've just changed a tiny bit.

[Sherie]

Yes, we stayed home. Sheena wasn't in any condition to do much, but don't assume the same, I've seen many kids up and about much earlier than Sheena was.

Is Kelsey supposed to donate 2 units? Sheena had a really tough time with that, she just barely had enough for one. They were going to discard it because it wasn't enough for a full unit, I had to practically beg them not to. She doesn't like to get stuck, so she was extremely nervous and almost passed out during the draw. Make sure she's well fed and hydrated prior to the donation.

I don't know if you talked to Dr. Lenke about blood loss during surgery but there is a very good chance she'll need at least one if not 2 units after surgery with a longer fusion.

[Kelsey's Mom]

Actually, we haven't been given a number. Our letter simply said, "If your child has not begun the blood donation process, it is imperative that he/she do so as soon as possible..."

Kelsey was appropriately "thrilled" with this aspect, of course.

So, after my walk, I will call Red Cross and find out how we get this ball rolling.

Wow! After all the waiting, it seems like this is going to happen very quickly. How is that possible?

It said we good donate "autologous" or "directed". I've got friends and family offering theirs, but I'm thinking her own blood would be the best choice, if we can get it done. After that, her dad is "O" and she, her sister, and I all share the same type "A". So, between us, we should be able to whip this puppy.