Not my second daugther too

[LindaRacine]

Thanks, I just responded.

Will you please attach the article you referenced or give me the title so I can look it up.

A Mom

Sorry that I forgot the reference...

http://www.ncbi.nlm.nih.gov/pubmed/16967278

[Pooka1]

Much to my surprise, I have found that some physicians actually don't like published research! I had a horrible case of thryoiditis last year. We went to the endocrinologist in town that was rated very highly by a local magazine. My husband always goes to appointments with me. My disease had a unique presentation and we brought up a peer reviewed article that suggested a line of care that he didn't mention. His reaction was a VERY sarcastic: "pfft, re-surch. So overblown!" My husband and I just looked at each other, got up and walked out. He chased us up until the waiting room, trying to make excuses, then he stopped when we opened the door to the waiting room.

After teaching in a medical school for five years, I know what an integral component peer reviewed research is to their education. This attitude is very surprising to me. I question how these physicians are meeting their CME requirements if they are not keeping up with their society's work.

Hi there. I have a few thoughts on your comments.

First I think he should have read the journal article you brought to your appointment.

Second, he may be aware how flawed peer-reviewed research is. I am on a tablet and can't easily post the refs but there is evidence a majority of published research results are false. Also, an attempt to replicate 53 "landmark" medical studies succeeded in only producing the same results for a few.

Third, although flawed, I think the medical literature, appropriately considered, is still better than anecdote so that doctor was out of line.

[Pooka1]

Hi AMom,

I have no info on this but agree with the comment about not necessarily sticking with a pediatric surgeon and going with whoever has the most experience dealing with this using all types of treatments, conservative and surgical. Linda's comment about possibly needing the lordosis seems important... if you correct that it may cause problems elsewhere. You really need a specialist specialist in my opinion especially because you are dealing with lumbar.

You are handling this expertly as always. :-)

[AMom]

Hi...

It's possible that she needs exercise and bracing, but I'm not the one who could tell you that, even if I had all of the info. I think it's actually possible that she needs the extra lordosis to balance her spine (which might or might not be a surgical problem).

Please see your PM for add'l info.

--Linda

Thanks, I just responded.

Will you please attach the article you referenced or give me the title so I can look it up.

A Mom

[LindaRacine]

Linda,

We live in California, but will go wherever needed to work with a physician experienced with this procedure. The experience part + successes = confidence for us. It is a plus if they are good with teens. I was hoping you would say she needs exercise and bracing, not surgery (a mom can dream). All I know about her spine is that side-to-side her spine is straight, but front-to-back the curve is very noticeable in even the best choice of clothes (which is causing problems for her at school); and it hurts in two spots: between the shoulder blades (the level of pain is remains at the same level) and in the lower back--(the level of pain in this area is getting worse).
Lordosis: 85
Pelvic Incidence: 85
Thoracic Kyphosis: 44

I would like to read it, but do not see the article you referenced above.

A Mom

Hi...

It's possible that she needs exercise and bracing, but I'm not the one who could tell you that, even if I had all of the info. I think it's actually possible that she needs the extra lordosis to balance her spine (which might or might not be a surgical problem).

Please see your PM for add'l info.

--Linda

[AMom]

AMom

I so sorry this happened with your daughter and this doctor......Its best to move on.

After all the years of talking to different doctors, waiting through the years, I had a really good feel on who was capable of major deformity surgery and who wasn’t. By the time I was getting close, (2005) upon my visit to my GP, I didn’t want to hear about what “other” things that needed to be done, or sidestepping methods of making money, I wanted a referral, and I wanted it in 2 minutes. I have this problem and I know you cant help me. (smiley face) Having major adult scoliosis and sciatica pain, knowing your ready, thinking about surgery, results in a shorter attention span. I also could not sit down.

After my current surgeon came to town, I also switched my primary care physician to my scoliosis surgeon. I didn’t really think that wasting time and money with the wrong doctor was necessary. Let concentrate on the issue at hand, my scoliosis....This way I also had a doctor, a specialist with extensive scoliosis training calling the shots on other issues like my broken shoulder and arm, selecting my vascular surgeon, and so forth.

I guess its part of the “doctor tour”..... Once I was hooked up, it was a specialist to specialist referral network. Dr Menmuir would say, Go see so and so, do it now....

I guess I could have simply skipped all the fun, and went to UCSF, or any of the reputable arenas that handle spine disorders, it would have made it easier since they have many specialists there, its just how my card fell on the table. I also wasn’t quite ready in 2005, cancelled, and waited and talked to my surgeon for 2-1/2 years about things....this mental prep was necessary for me to commit.

I found hot water soaks the easiest quickest way for pain relief.....I understand what lumbar pain feels like. (smug face)

Ed

Thanks Ed,

I have been following your thread for quite awhile.

If she needs surgery, I believe she will need some time to adjust--she cries over the pain of a vaccine and blood draw.... I don't want to think about how she would have responded if she were in your situation.

Her favorite thing to do is soak in the tub. When I hear a voice in her bathroom, I know she is doing her homework/ listening to a book while soaking--we love Learning Ally!

A Mom

[AMom]

Hi...

An 85 degree lordosis might be significant. There are some special considerations, however, that might make hyperlordosis appropriate.

I'm not sure I would trust most pediatric scoliosis specialists to have enough experience in treating a sagittal plane deformity (other than Scheurmann's). Where do you live?

I think you're exactly right about the osteotomy needing to be the reverse of what you're probably seeing on the internet, though it's a lot more complex. To reduce lordosis, the anterior column would need to be shortened. When the anterior column is shortened, the posterior column would be lengthened. Here's an article that discusses the surgical correction of hyperlordosis. Note that it's specifically discussing hyperlordosis of neuromuscular origin. Hopefully your daughter won't require surgery.

--Linda

Linda,

We live in California, but will go wherever needed to work with a physician experienced with this procedure. The experience part + successes = confidence for us. It is a plus if they are good with teens. I was hoping you would say she needs exercise and bracing, not surgery (a mom can dream). All I know about her spine is that side-to-side her spine is straight, but front-to-back the curve is very noticeable in even the best choice of clothes (which is causing problems for her at school); and it hurts in two spots: between the shoulder blades (the level of pain is remains at the same level) and in the lower back--(the level of pain in this area is getting worse).
Lordosis: 85
Pelvic Incidence: 85
Thoracic Kyphosis: 44

I would like to read it, but do not see the article you referenced above.

A Mom

[titaniumed]

AMom

I so sorry this happened with your daughter and this doctor......Its best to move on.

After all the years of talking to different doctors, waiting through the years, I had a really good feel on who was capable of major deformity surgery and who wasn’t. By the time I was getting close, (2005) upon my visit to my GP, I didn’t want to hear about what “other” things that needed to be done, or sidestepping methods of making money, I wanted a referral, and I wanted it in 2 minutes. I have this problem and I know you cant help me. (smiley face) Having major adult scoliosis and sciatica pain, knowing your ready, thinking about surgery, results in a shorter attention span. I also could not sit down.

After my current surgeon came to town, I also switched my primary care physician to my scoliosis surgeon. I didn’t really think that wasting time and money with the wrong doctor was necessary. Let concentrate on the issue at hand, my scoliosis....This way I also had a doctor, a specialist with extensive scoliosis training calling the shots on other issues like my broken shoulder and arm, selecting my vascular surgeon, and so forth.

I guess its part of the “doctor tour”..... Once I was hooked up, it was a specialist to specialist referral network. Dr Menmuir would say, Go see so and so, do it now....

I guess I could have simply skipped all the fun, and went to UCSF, or any of the reputable arenas that handle spine disorders, it would have made it easier since they have many specialists there, its just how my card fell on the table. I also wasn’t quite ready in 2005, cancelled, and waited and talked to my surgeon for 2-1/2 years about things....this mental prep was necessary for me to commit.

I found hot water soaks the easiest quickest way for pain relief.....I understand what lumbar pain feels like. (smug face)

Ed

[LindaRacine]

Linda,

If normal lordosis ranges from 40 to 60 degrees, does this mean 85 degrees of lordosis is minor? I ask because 25 degrees beyond "normal" in scoliosis is considered to be a minor curve.

Are ranges provided for lordosis as they are for scoliosis?

I did a cursory review of "osteotomies" and the ones I saw referenced correcting flat back/ increasing lordosis and kyphosis. So I am guessing this means that the procedure would be similar, except the wedge/ segment removal would be the opposite of what is shown for those procedures???

Since her breathing is under control, we have been taking advantage of her good health to increase aerobic capacity and reduce the significant weight she gained during the last two years of struggling to breath at her high school. Even if 85 degrees is not considered to be minor, I am guessing a surgeon will want her to remove another 20lbs and be above 1000 ml on the spirometer (she has improved but her current level is "best of 3" = 1k ml). Her height is 5'1", weight is 166lbs, age is 16, and dx is Alpha-1 (MZ) symptomatic carrier--her symptoms are the same or worse than most Alpha-1 (ZZ) of her age. We do not know if her bone density levels have been negatively impact by meds.

Can you share some names of reputable orthos who have experience with this procedure?

Thank you.

A Mom

Hi...

An 85 degree lordosis might be significant. There are some special considerations, however, that might make hyperlordosis appropriate.

I'm not sure I would trust most pediatric scoliosis specialists to have enough experience in treating a sagittal plane deformity (other than Scheurmann's). Where do you live?

I think you're exactly right about the osteotomy needing to be the reverse of what you're probably seeing on the internet, though it's a lot more complex. To reduce lordosis, the anterior column would need to be shortened. When the anterior column is shortened, the posterior column would be lengthened. Here's an article that discusses the surgical correction of hyperlordosis. Note that it's specifically discussing hyperlordosis of neuromuscular origin. Hopefully your daughter won't require surgery.

--Linda

[AMom]

Much to my surprise, I have found that some physicians actually don't like published research! I had a horrible case of thryoiditis last year. We went to the endocrinologist in town that was rated very highly by a local magazine. My husband always goes to appointments with me. My disease had a unique presentation and we brought up a peer reviewed article that suggested a line of care that he didn't mention. His reaction was a VERY sarcastic: "pfft, re-surch. So overblown!" My husband and I just looked at each other, got up and walked out. He chased us up until the waiting room, trying to make excuses, then he stopped when we opened the door to the waiting room.

After teaching in a medical school for five years, I know what an integral component peer reviewed research is to their education. This attitude is very surprising to me. I question how these physicians are meeting their CME requirements if they are not keeping up with their society's work.

I always attend their medical visits with them, just as your husband does with you, so I can prompt them if they forget a question when overwhelmed by a new dx thrown out-of-the-blue or are feeling frustrated by non-responses. We have brought in peer-reviewed literature in the past, but this time it was an informational handout created for physicians including contact info and siting research to help them understand the rare disorder they are seeing at this moment because no one can be expected to know everything.

We understand curtesy and act accordingly by informing the office when scheduling an appointment of the rare dx, offering to send literature along with lab reports & images, hand carrying same in case there was a communication error, prioritizing our questions, keeping the list short, & providing the doctor with a copy of the list too. It would be nice if we were treated with the same curtesy.

I am sorry that happened to you. You both made your point without causing a scene. Sometimes battles aren't worth the fight--and it is best for all if you look for another doctor who will work with you rather than belittle your efforts.

[AMom]

thank you for your empathy

So unfortunate that the doctor feels he can treat his patients like that. We teach our children to respect adults and then the adults act bad. We as patients wait for appointments and value time spent with the doctor and maybe we should walk out when treated badly.

It is so very frustrating.

My girls get along very with their long-standing physicians.

I probably shouldn't admit this, but I have made no effort to stop their game of getting "new to them" doctors to 1) smile, 2) stay on point, 3) speak directly to THEM, and 4) answer their questions.

Before anyone thinks they are rude teenagers, they are generally very good about not signing in front of non-signers and are discrete if they find it necessary to do so.

Thank you for your empathy.

[AMom]

lordosis questions

Normal lordosis is 40 to 60 degrees.

Excess lordosis can be corrected much like scoliosis, with spinal fusion and instrumentation, though I think it always (or almost always) involves osteotomies.

--Linda

Linda,

If normal lordosis ranges from 40 to 60 degrees, does this mean 85 degrees of lordosis is minor? I ask because 25 degrees beyond "normal" in scoliosis is considered to be a minor curve.

Are ranges provided for lordosis as they are for scoliosis?

I did a cursory review of "osteotomies" and the ones I saw referenced correcting flat back/ increasing lordosis and kyphosis. So I am guessing this means that the procedure would be similar, except the wedge/ segment removal would be the opposite of what is shown for those procedures???

Since her breathing is under control, we have been taking advantage of her good health to increase aerobic capacity and reduce the significant weight she gained during the last two years of struggling to breath at her high school. Even if 85 degrees is not considered to be minor, I am guessing a surgeon will want her to remove another 20lbs and be above 1000 ml on the spirometer (she has improved but her current level is "best of 3" = 1k ml). Her height is 5'1", weight is 166lbs, age is 16, and dx is Alpha-1 (MZ) symptomatic carrier--her symptoms are the same or worse than most Alpha-1 (ZZ) of her age. We do not know if her bone density levels have been negatively impact by meds.

Can you share some names of reputable orthos who have experience with this procedure?

Thank you.

A Mom

[LindaRacine]

Normal lordosis is 40 to 60 degrees.

Excess lordosis can be corrected much like scoliosis, with spinal fusion and instrumentation, though I think it always (or almost always) involves osteotomies.

--Linda

[Prfbones]

Much to my surprise, I have found that some physicians actually don't like published research! I had a horrible case of thryoiditis last year. We went to the endocrinologist in town that was rated very highly by a local magazine. My husband always goes to appointments with me. My disease had a unique presentation and we brought up a peer reviewed article that suggested a line of care that he didn't mention. His reaction was a VERY sarcastic: "pfft, re-surch. So overblown!" My husband and I just looked at each other, got up and walked out. He chased us up until the waiting room, trying to make excuses, then he stopped when we opened the door to the waiting room.

After teaching in a medical school for five years, I know what an integral component peer reviewed research is to their education. This attitude is very surprising to me. I question how these physicians are meeting their CME requirements if they are not keeping up with their society's work.

[jackieg412]

So unfortunate that the doctor feels he can treat his patients like that. We teach our children to respect adults and then the adults act bad. We as patients wait for appointments and value time spent with the doctor and maybe we should walk out when treated badly.