Chiropactic and Scoliosis

[Syd'sDad]

Hi Mariaf,

Yes I have talked at length with Janet Cerrone at Shriners Phily. She thought my daughter fit the profile with a risser score of 0, wrist flims that indicate far from incomplete growth and no period yet. Janet requested films to evaluate but when I hit a wall with my wife and daughter on the subject, I backed off and have not sent them ( I didn't want to waste her time if I can't get the family on board).

Thanks for the interest...

[Karen Ocker]

For Syd's Dad

Syd's Dad:

It sounds like there is denial, misinformation and fear gripping your daughter and wife. We've all been there to one degree or another.

There is a web site for kids: spinekids.com where your daughter can chat with other kids.

The link below has lots of information that can help your wife:

http://www.scoliosis.org/info.php

[Wishing]

For Pooka1:

Who is the VET your horse goes to?

[Pooka1]

Hi Mariaf,

Yes I have talked at length with Janet Cerrone at Shriners Phily. She thought my daughter fit the profile with a risser score of 0, wrist flims that indicate far from incomplete growth and no period yet. Janet requested films to evaluate but when I hit a wall with my wife and daughter on the subject, I backed off and have not sent them ( I didn't want to waste her time if I can't get the family on board).

Thanks for the interest...

One of my twins (W) is a candidate for VBS based on the rudimentary knowledge I have at the moment. She investigated it. I investigated it. She investigated it further after I asked her to do so.

W does not want to try VBS and will go into a night time bending brace instead in order to hopefully avoid surgery. I understand her reasons. My husband agrees with her.

There are valid reasons to not want to try VBS at this early stage although it does look promising. Your daughter and wife are not being irrational.

Her identical twin (S) will have surgery at the end of March. Unfortunately, the fact that S progressed so fast and so far makes the likelihood of the brace preventing surgery for W is very low.

S will be getting posterior spinal fusion in a portion of her back that will not affect future bending. I am immensely grateful to the doctors who perfected it that there is a successful surgical repair for this condition. It could be a lot worse.

Good luck with your daughter.

[Pooka1]

For Pooka1:

Who is the VET your horse goes to?

I'll PM you.

There are plenty of folks who do chiro on horses. I have a low tolerance for paranormal stuff like chiro so I wanted to at least have a vet do it. But as I stated before, just because he calls it chiro doesn't mean there is a valid basis to do so. I mean he is clearly removing a pain response and, though I told him about the million dollar prize, he hasn't tried to claim it as far as I know. That should tell us something. I know what it tells me.

[mariaf]

There are valid reasons to not want to try VBS at this early stage although it does look promising. Your daughter and wife are not being irrational.

Her identical twin (S) will have surgery at the end of March. Unfortunately, the fact that S progressed so fast and so far makes the likelihood of the brace preventing surgery for W is very low.

Of course, the decision to have VBS or ANY surgery is a personal one.

However, what you said about "the likelihood of bracing preventing fusion for W being very low" is precisely the reason many parents (and patients) DO opt for VBS - to try to avoid fusion - so far the results have been very, very good in that respect.

Just food for thought.

[Syd'sDad]

It sounds like there is denial, misinformation and fear gripping your daughter and wife. We've all been there to one degree or another.

Possibly, but I'm not so sure. My wife has done a fair bit of research on the subject (albeit, not as much as I) and wants to give more "traditional" solutions a chance first. As for my daughter, I think she wants to just be a teenager at this point and whether it be better or worse, surgery would interrupt her immediate "normal" teenage life. She has no desire to go to spinekids or the like (I've tried). The response I get indicates that she wishes not to dwell on the condition or become consumed with it.

Pooka1 says it best, the decision for surgery is a personal one. We each must walk our own path, right or wrong and live with the consequences of that decision. Again, where did I put that crystal ball.

[Pooka1]

Possibly, but I'm not so sure. My wife has done a fair bit of research on the subject (albeit, not as much as I) and wants to give more "traditional" solutions a chance first. As for my daughter, I think she wants to just be a teenager at this point and whether it be better or worse, surgery would interrupt her immediate "normal" teenage life. She has no desire to go to spinekids or the like (I've tried). The response I get indicates that she wishes not to dwell on the condition or become consumed with it.

Yes. Once my kids did their research and we discussed it, they sort of didn't want to discuss it after a point. It's a large burden for two 13 y.o.s to have to deal with when they have so much else going on in their life. I think S is the lucky one because her "experience" with scoliosis will be relatively short. That is, the time between diagnosis and coming off the last restriction (no gym) is on the order of 15 months and she will never have to wear a brace either before or after surgery. Of course not considering no gym, she will hopefully be almost back to normal just a few months after the surgery.

W is going to be in the night time bending brace for maybe two years and still has an 80% chance of needing surgery. That's a raw deal in my opinion. So raw that if it were me, I would forgo the brace and just have the surgery if needed. She has the same curve as S and is not expected to have the fusion affect bending much at all. When you consider that the VBS is surgery also and there is no guarantee she wouldn't also need spinal fusion, that's just more than I can bear, I don't know about her. If we can keep it to one brace and possibly one surgery within a few year period, I think that's about as good as it gets.

A major consideration here is to stay as normal as possible. If we had to fly for pre-surgery, surgery, and post-surgery appointments, plus add the recovery period, she would be missing a ton of school, more than S will miss with the spinal fusion here in town. S will have a tutor who will not only have her caught up with what she missed but hopefully have her ahead when she returns. I want her to have some consolation for missing so much school.

Pooka1 says it best, the decision for surgery is a personal one. We each must walk our own path, right or wrong and live with the consequences of that decision. Again, where did I put that crystal ball.

I think you are a very good Daddy based on what you have written here. I'm confident we will all make the correct decision. We can only do our best and that includes not beating ourselves up despite having done our best.

(text added so post will post.)

[Syd'sDad]

Well said Pooka1! And thanks for the kind words...

I've reached out to a local Rolfer to gather some information on that process. I'll report what she says.

[Snoopy]

Syd's Dad,

My heart goes out to you. For the most part, we cruise along raising our children without questioning our decisions, and BAM! your child is diagnosed with Scoliosis! Until this time, all we know about Scoliosis is that at some point in our teen years, the girls were pulled aside in gym class and the nurse looked at your back. We were told they were looking for "curvature of the spine." Right?

My daughter was diagnosed at her 12 y.o. check up with a 36* curve. Already very close to that magical 40* when some doctors do surgery. From day one, I told Jamie that this was her Scoliosis but her father and I would help her through everything. I felt is was VERY important to empower her by allowing her to be involved in every decision especially since she would be the one wearing the brace or going through surgery.

Like you, I did a ton of research on my own before we saw the first of five (yes, five) orthopedic doctors. The first doc was much like your experience with an ortho. This doctor treated Jamie like she was a 2 y.o.! He never looked her in the eye. Never talked to her. He only had contact with her when he was examining her. He prescribed a Milwaukee brace. Let's just say, it was horrible. We contacted the doctor and he had NO sympathy what so ever. he said wear it and basically that was it.

We switched to a female doctor at the same hospital thinking she would be more understandable to the needs of a teenager. Well, let's just say she wasn't the doctor for us either.

Doctor #3, was AWESOME, but truthful. He was an adult orthopedic surgeon. He told us he was able to treat Jamie while she was braced, but wouldn't be able to do her surgery if she got to the point. We thanked him for his honesty and moved on.

We went to Dr. Betz at the Shriner's in Philly. We loved him! After one meeting, we started the process of scheduling surgery with the intention of having Dr. Betz do the surgery if the fifth doctor wasn't the one for us. The fifth doc was at our local children's hospital where there first two opinions were.

Well, we walked into the appointment with the fifth doctor and were floored! He walked in and introduced himself to Jamie first, then me. He looked at her chart and asked why we were here? I guess he sensed our confussion and went on to explain that we were in excellent hands with Dr. Betz, so why were we there to see him? Wow! What a humble guy! See, this doctor came as highly recommended as Dr. Betz. We told him our reasons for being there and he proceeded to sit down and talk with Jamie (his back to me). Once he was done examining Jamie and talking to her, he turned to me and asked if there was anything on my mind that wasn't already discussed.

Since this is getting so long, I won't go on any further. I'll just say that Dr. Lee Segal, our fifth opinion, was the one who ended up doing Jamie's surgery. Her Scoliosis went from 36* at diagnosis to 46* a year later when she had surgery. Yes, it was a long journey finding the right doctor, but it was well worth the search. Not every ortho. is uncaring or detached. There a few wonderful doctors who life is dedicated to our kids. Keep looking and you'll not only find the right doctor for your family, but you'll also find the "right" answer for your daughter.

Sorry for the long post.

Mary Lou

[Syd'sDad]

Sorry for the long post.

No need to apologize Mary Lou! Thanks for taking the time and effort to share your experiences, it is greatly appreciated!

Your post reinforces to all of us the need to shop around, that each individual is different and that one doctor does not fit all!

Take Care,

Joe

[mariaf]

Pooka1 wrote:

"When you consider that the VBS is surgery also and there is no guarantee she wouldn't also need spinal fusion, that's just more than I can bear, I don't know about her. If we can keep it to one brace and possibly one surgery within a few year period, I think that's about as good as it gets."

I just wanted to make a comment since I'm very familiar with how candidates are chosen for VBS, in case it might be useful to another parent as well.

Yes, what you say is true. There are no guarantees in life.

However, since the inception of VBS 6 or so years ago, the doctors have learned who is and isn't likely to have success with it.

For example if a child comes in with, say a curve in the upper 20's or low 30's, has a good amount of growth left AND a lot of flexibility in the spine (say his or her spine bends practically straight on bending x-ray), then VBS will almost certainly work for them. Of course, with any form of treatment there is no guarantee, but this is as close to one as you can get. These kids are often referred to by the doctors as "ideal candidates".

Given the fact that VBS is an 'easier' surgery than fusion, much less invasive, shorter recovery, no restrictions at all after the first month or so, those are odds that a lot of parents consider too good to pass up.

Of course, I respect everyone's personal decision. I just wanted to explain why the VBS option is so attractive to a lot of parents whose kids are considered ideal candidates - it gives them an EXCELLENT chance of avoiding fusion.

Good luck to all these kids!

[txmarinemom]

Pooka and Syd'sDad, I am truly saddened by the choices you both face, and thankful every day I was affected by this; not one of my children. I feel for you both.

I've been following this thread, and since the questions/opinions are on the table, there are a few things I'd like to point out as gently as possible as there are others (reading this ... perhaps just not posting) who are, IMHO, missing all the pieces of the puzzle.

In the end, of course, you have to do what you feel is right. I just can't wrap my mind around the logic of some of the statements thus far ...

There IS no crystal ball, but there IS empirical data on certain treatments, curve progression, and occasionally placing more value on what is MOST likely to benefit your child vs. "empowering" a 13 year old to decide what's best for them in the long run. They simply do NOT have the mental accuity/rationale/long-term vision (no matter how intelligent) to determine any form of treatment efficacy as it applies to their "normal teen life".

Syd'sDad, I'm really confused you think "possibly" your wife and daughter are in denial:

Possibly, but I'm not so sure. My wife has done a fair bit of research on the subject (albeit, not as much as I) and wants to give more "traditional" solutions a chance first. As for my daughter, I think she wants to just be a teenager at this point and whether it be better or worse, surgery would interrupt her immediate "normal" teenage life. She has no desire to go to spinekids or the like (I've tried). The response I get indicates that she wishes not to dwell on the condition or become consumed with it.

Since when is chiropractic considered "traditional" treatment for scoliosis? As Karen - and others - have pointed out, there is not *one single study* that demonstrates long term (barely even short term) positive effects from chiropractic. I certainly wouldn't consider that a "traditional" solution. A "solution" by it's very definition *works*. Even as a "supplemental treatment" to bracing, yoga shows more positive results than chiropractic. I saw you mentioned Rolfing, which applies more active principles of creating/maintaining flexibility vs. passive manipulation (chiro), and IMHO, is a much better "supplement".

I'm entirely sure your daughter would rather NOT think about scoliosis, or how ANY treatment would affect her "normal" teenage life. I'm sure none of us did, but it's reality. Denial, and rufusal to learn *anything* about it won't make it go away - or none of us would have EVER required treatment.

... To compound the issue, My daughter is a good candidate for VBS (the way I'd like to go) but my wife and Sydney will have no part of it. It is for that reason that I began to seek local alternatives to SUPPLEMENT bracing.

I too believe that chiro cannot permanently correct curves (33L, 30T) but perhaps it can improve comfort and joint flexibility. Where did I put that crystal ball??????

I wish I could get my wife on board with VBS, one problem here is the narrow window we have available and at this point we have no idea whether the curves are progressing or not. My daughter was just diagnosed on 01/14/08, so we have only established a baseline at this point. I'd hate to jump right at VBS if the curves are stable...

I've allowed the chiro to do two gentle adjustments on my daughter during our initial consultations and I will say that my daughter felt much better afterward and wants to return, thus complicating the decision. I'm very analytical about things and don't necessarily believe in chiropractic; although I will say that chiro is the only thing that helped my sciatica from an injury in my early 30's.

Again, active stretching (yoga, swimming, pilates) can equally decrease pain/increase flexibility (for free - and with the same results).

I realize you don't yet know how her curve is - or isn't - moving, but do you realize how likely she IS to move at 33L°/30T° - with a Risser of 0/no menarche? She has yet to hit the window when most curves move ... *quickly*.

I sincerely hope she doesn't move, but how long do you wait if it does show movement? And will you have enough time to react?

Does your wife realize the high success rate of VBS is largely due to thorough evaluation prior to selection of candidates? Does she understand what exactly the remaining options are if this window is missed? Yes, VBS is surgery (just like fusion) but the two are as different as a tonsillectomy and open heart surgery.

(If you *truly* believe fusion and vertebral stapling are equivalent simply because they're both surgeries, view my fusion photos. Caution: The photos are quite graphic, but nothing else seems to be getting through. Fusion and VBS are *very* different animals, and I'd have given *anything* to have the *option* of VBS. I guarantee you if it HAD been an option, my parents wouldn't have asked for my input given the choice of the two.)

One of my twins (W) is a candidate for VBS based on the rudimentary knowledge I have at the moment. She investigated it. I investigated it. She investigated it further after I asked her to do so.

W does not want to try VBS and will go into a night time bending brace instead in order to hopefully avoid surgery. I understand her reasons. My husband agrees with her.

There are valid reasons to not want to try VBS at this early stage although it does look promising. Your daughter and wife are not being irrational.

Her identical twin (S) will have surgery at the end of March. Unfortunately, the fact that S progressed so fast and so far makes the likelihood of the brace preventing surgery for W is very low.

W is going to be in the night time bending brace for maybe two years and still has an 80% chance of needing surgery. That's a raw deal in my opinion. So raw that if it were me, I would forgo the brace and just have the surgery if needed. She has the same curve as S and is not expected to have the fusion affect bending much at all. When you consider that the VBS is surgery also and there is no guarantee she wouldn't also need spinal fusion, that's just more than I can bear, I don't know about her. If we can keep it to one brace and possibly one surgery within a few year period, I think that's about as good as it gets.

I'm sorry if this sounds harsh, but *again* a CHILD is choosing treatment. While you say you "understand" her reasons, you also estimate her chances of fusion surgery AFTER bracing at 80%. Who exactly is the parent?

Could you please elaborate on your "valid reasons" to dismiss VBS (which, BTW, is *far* beyond "early stage") now and wait on almost certain fusion? I assure you, fusion is a MUCH more serious/painful surgery, with a MUCH longer recovery.

Are you aware that VBS has => an 80% success rate since inception? Recent numbers have greatly increased since they have better data upon which to rely as predictors for success in candidates. Of the =< 20% not necessarily considered VBS "successes" (bear in mind, this is *since inception*), this does NOT mean those kids went on to have fusion. "Not a success" also includes cases of 5-10° progression after stapling; a hell of a lot better overall than progression during or after bracing (of ANY type). It could simply mean (for example) someone who was stapled at 28° is now 36°

As far as "S", yes, thoracic fusion (I was just fused 18 days ago from T4-L1) has little effect on bending, and yes, it could certainly be worse.

I simply don't understand why waiting for "W" to get worse is the better option. I'm not sure why you feel fusion is such a strong possibility after stapling when the data simply does not indicate such.

Regardless of what you decide, best of luck to both of you and your girls.

Regards,
Pam

[Pooka1]

txmarinemom wrote:

Could you please elaborate on your "valid reasons" to dismiss VBS (which, BTW, is *far* beyond "early stage") now and wait on almost certain fusion? I assure you, fusion is a MUCH more serious/painful surgery, with a MUCH longer recovery.

For the spinal fusion, I was told S would be out of school for 3 weeks. I think that is after she comes home from the hospital. So she will be out of school about 4 weeks.

What is the time in the hospital and time home for VBS?

We live in Raleigh and would have to fly to Philly or somewhere to have the VBS. When you consider all the travel time, it is not clear if W will miss more school than S if we do VBS.

Does VBS address rib rotation?

ETA: The long term on modern spinal fusion is much more defined than it is for VBS. That is a big consideration.

ETA: I read a testimonial about a kid who had the spinal fusion surgery and had an epidural in place for the first few days. She said she had NO pain. Now I don't know how long one can have an epidural in place and I don't know if she was walking with one. I was all set for my medical-miracle medicated birth but had a natural birth foist upon me when I progressed too far for the epidural. I was not prepared and I must say what should have been the best experience of my life did not turn out to be so.

Reading the testimonials for the kids versus adults, I note it is far worse in all regards for adults. That's not to say it is easy for kids but my sense is that this is getting better and better, right down to the plastic surgery wound closure. Not that that is any kind of consideration but it a sign they they continue to perfect this surgery.

[Syd'sDad]

Pooka and Syd'sDad, I am truly saddened by the choices you both face, and thankful every day I was affected by this; not one of my children. I feel for you both.

I've been following this thread, and since the questions/opinions are on the table, there are a few things I'd like to point out as gently as possible as there are others (reading this ... perhaps just not posting) who are, IMHO, missing all the pieces of the puzzle.

In the end, of course, you have to do what you feel is right. I just can't wrap my mind around the logic of some of the statements thus far ...

There IS no crystal ball, but there IS empirical data on certain treatments, curve progression, and occasionally placing more value on what is MOST likely to benefit your child vs. "empowering" a 13 year old to decide what's best for them in the long run. They simply do NOT have the mental accuity/rationale/long-term vision (no matter how intelligent) to determine any form of treatment efficacy as it applies to their "normal teen life".

I am not giving into the whims of a 13 year old nor have I empowered her to make any of her own treatment decisions. I also fully understand the limits of her reasoning /rationale at this age. However, when dealing with someone of this age, there is an immense amount of tact necessary when approaching certain subjects. You, as a mother, must certainly understand that there is no reasoning with a teenager and the "because I said so" approach is no way (in my opinion) to proceed here. I and her mother, will make the decision that we believe to be in her best interest. But understand this, it is my daughter that will have to physically live with the decisions we make. I am not willing to make ANY decision that has ANY potential for harm, in 5 weeks time.

Syd'sDad, I'm really confused you think "possibly" your wife and daughter are in denial:


Since when is chiropractic considered "traditional" treatment for scoliosis? As Karen - and others - have pointed out, there is not *one single study* that demonstrates long term (barely even short term) positive effects from chiropractic. I certainly wouldn't consider that a "traditional" solution. A "solution" by it's very definition *works*. Even as a "supplemental treatment" to bracing, yoga shows more positive results than chiropractic. I saw you mentioned Rolfing, which applies more active principles of creating/maintaining flexibility vs. passive manipulation (chiro), and IMHO, is a much better "supplement".

Perhaps "traditional" was a poor choice of term, non-invasive would have been a better choice. And yes, by engaging in these discussions, I would have to agree that there are better alternatives than chiropractic.

I'm entirely sure your daughter would rather NOT think about scoliosis, or how ANY treatment would affect her "normal" teenage life. I'm sure none of us did, but it's reality. Denial, and refusal to learn *anything* about it won't make it go away - or none of us would have EVER required treatment.

I never said she refused to learn "anything" or that I was going to just drop the subject and hope the scoli goes away. I was simply relaying the impression I get from a teen that has been blitzed by a flurry change. I hardly think that failure to jump onto a website or into literature about the condition signal denial on her part or that of my wife. Also understand that the opinions on these sites are like -------- and everybody has one. While I reach out and solicit comment, I will not allow public opinion to dictate policy. If surgery was such a clear and easy choice, why have so many waited so long?

I realize you don't yet know how her curve is - or isn't - moving, but do you realize how likely she IS to move at 33L°/30T° - with a Risser of 0/no menarche? She has yet to hit the window when most curves move ... *quickly*.

Yes, I most certainly do....

I sincerely hope she doesn't move, but how long do you wait if it does show movement? And will you have enough time to react?

Lord only knows... That is why 5 weeks after diagnosis, I'm expending so much time an effort to educate myself and wife in an effort to reach a viable decision in minimal time.

Does your wife realize the high success rate of VBS is largely due to thorough evaluation prior to selection of candidates? Does she understand what exactly the remaining options are if this window is missed? Yes, VBS is surgery (just like fusion) but the two are as different as a tonsillectomy and open heart surgery.

(If you *truly* believe fusion and vertebral stapling are equivalent simply because they're both surgeries, view my fusion photos. Caution: The photos are quite graphic, but nothing else seems to be getting through. Fusion and VBS are *very* different animals, and I'd have given *anything* to have the *option* of VBS. I guarantee you if it HAD been an option, my parents wouldn't have asked for my input given the choice of the two.)

No, I'm sure she does not but I assure you that she personally knows the pain and debilitation that can happen when the best intended surgery goes wrong....There have been and will continue to be, less than perfect outcomes with surgery and that includes VBS; the chances may be small but they are there none-the-less.

I'm sorry if this sounds harsh, but *again* a CHILD is choosing treatment. While you say you "understand" her reasons, you also estimate her chances of fusion surgery AFTER bracing at 80%. Who exactly is the parent?

No offense taken but once again, my daughter is not dictating what direction the treatment is taking and if you read my previous statements, I have not inferred that she was.

Could you please elaborate on your "valid reasons" to dismiss VBS (which, BTW, is *far* beyond "early stage") now and wait on almost certain fusion? I assure you, fusion is a MUCH more serious/painful surgery, with a MUCH longer recovery.

I have not dismissed VBS, I simply stated

I backed off and have not sent them ( I didn't want to waste her time if I can't get the family on board).

Backed off being the operative term, while I gather the pertinent data to present VBS as the best option LONG TERM. What kind of husband or father would I be I exerted my will in an authoritarian manner? What would your comment here be if I came on and stated: "My wife and daughter don't want it but I'm making them go along with VBS?

Pam, the problem with written communication and message boards is that it is very difficult to convey tone unless you are a truly gifted writer. My replies to your comments above may sound terse but I assure you they are not. I truly appreciate what you and many others with experience have to say. To compound matters, the comments and questions posed here are a brief snapshot into the thoughts of and individual at that moment and could never reveal the entire scope of what is playing out in their daily life. Tomorrow, films are on the way to Philly and I will continue to educate both my wife and daughter as I become more informed.

Joe