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Thread: Chiropactic and Scoliosis

  1. #31
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    I'm going to answer each response separately from Pooka and Syd'sDad so it's more clear. As much as I tried to keep the questions separate via the "quote" feature, I fear I only confused things.

    I honestly, in NO way, meant to critique either of your parenting skills. My main reason for posting was to help ensure the data you had was truly factual - and would help in making the right choice for your girls.

    Yes, I'm a parent, but I don't have the monster either of you do staring me down. Beyond imagining the sheer terror you must feel, I can't say I know what you're going through. I can only hope I'd display the courage to sit through the crash course initiation into a club which I certainly didn't apply .

    Now let me see if I can answer both your questions in a clear manner ...

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


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  2. #32
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    Syd'sDad,

    The source of each quote was preserved in the post to which you responded. In that case, the first few were your quotes and the last few were my quotes.

    I hope that clears up some confusion.

  3. #33
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    Quote Originally Posted by txmarinemom
    I honestly, in NO way, meant to critique either of your parenting skills. My main reason for posting was to help ensure the data you had was truly factual - and would help in making the right choice for your girls.
    Yes I knew that. I appreciate it.

  4. #34
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    Quote Originally Posted by Pooka1
    Syd'sDad,

    The source of each quote was preserved in the post to which you responded. In that case, the first few were your quotes and the last few were my quotes.

    I hope that clears up some confusion.
    Yes I assumed that. I tried to respond to those that applied to me.

  5. #35
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    Lightbulb Where we are coming from

    Joe:

    All of us(patients) here have walked the scoliosis walk. Our comments are not meant to be disrespectful or overly forceful. We are trying to help others avoid the mistakes we made, money and pain we wasted, and share what worked/didn't work for us. Sometimes we wish people would "get the picture" sooner and prevent these pitfalls.

    When I was 13(1956) when scoliosis surgery was done as a last resort and involved a year in casts and not walking, our scoliosis surgeon wanted me to have the surgery in Spring. My curves had accelerated at an alarming rate and immediate treatment was recommended. My parents, who had each suffered the loss of a parent within 30 days of each other, just couldn't face the prospect if putting a "healthy" child into the hospital. My mom wanted me to "have a summer". It was the worse summer of my life. I became too deformed in that short time to enjoy any teenage experiences, I was in terrible pain and actually looked forward to having the surgery in Sept. The correction at that time was modest-because we waited too long- and lasted me over 40 pain free productive years. At 60 I had a successful revision(5 years ago) and I am now pain free and employed in the profession I love.

    This is where we are coming from.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  6. #36
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    Pooka and Syd'sDad,

    Sorry for my delay in the responses I promised to write. My walking buddy got off work early, and we did our practice for the 5K on March 9th.

    Easily did 18 blocks tonight - woo-hoooooo! ;-) Could've done more, but trying to add at a prudent pace (just enough where I'm increasing, and no pain afterwards).

    There's such a fine line between rehab and damage. Quite a difficult one for me to tow.

    And, yes, for anyone who's wondering, Hanson knows I'm doing this. I'll be pinching him for pennies towards the cause tomorrow around 1:46 p.m. (3 week followup is at 1:45 ;-).

    I can't wait to see my xrays, and you know I'll be posting them as soon as I get home!

    Off to pen responses now, and Pooka/Syd'sDad, thank you for understanding the intent of my initial post. It certainly wasn't meant as combative or an attack; quite to the contrary.

    Karen's post had me nodding my head, leaking tears. The summary she wrote is so true ... I think most of us who pipe up from the "other side" sincerely hope our experiences can have some benefit to those who follow.

    Please bear that in mind if what I write is misconstrued: I *don't* know your specific circumstances, I only know we fight the same enemy. I don't mean to sound judgemental or all-knowing (I actually laughed out loud at that because I'm still trying to learn how to get my tennies on in < 10 min and get the apples I REALLY want out of the bottom crisper drawer. I'm rather like a monkey in training at the moment!).

    I certainly don't intend to make your journey more difficult - or most of all, cause additional stress or hurt.

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  7. #37
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    Quote Originally Posted by Pooka1
    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.
    Hi again,

    I just wanted to address a few points you raised as best I can. First, from talking to dozens of families I think a return to school, full time, 3 or 4 weeks after fusion may be within the range of possibility, but DEFINITELY on the early side. In fact I can't recall anyone I've known whose child has gone back full time that quickly. (Of course, that's not to say it NEVER happens.) I've found some doctors look at the glass half full and other half empty. Perhaps he gave you the "half full" answer. The norm seems to be 6-7 weeks for going back full time after fusion (not a scientific study, but what I have found to be the average out of the parents I've spoken to and stories I've followed on this forum and others). Don't forget most parents are very cautious - they worry about transportation, their kids getting bumped in crowded halls, etc. I find that most would rather keep their kids home 6-7 weeks before sending them to school for full days.

    There is also a range for VBS with regard to returning to school. One child went back after a week (not the norm). The average seems to be a couple of weeks. Every child is different but I can tell you it's a shorter recovery in terms of getting back to "normal" (stamina, activities, restrictions, etc.) Within about 2-3 weeks my son seemed 100% like his old self. His surgery was in March and by June he was at a pool party jumping in with all the other kids, allowed to do anything (all restrictions were actually lifted at his 2 month checkup).

    To answer your next question - Yes VBS DOES address rotation. They "unrotate" the spine in the OR during the VBS procedure. I saw on x-ray the difference in my son's rotation when we compared pre-op and current x-rays.

    As far as the kid you read about who had no pain after fusion, I'd say that's a RARITY at best (with any surgery for that matter). Even after VBS there will be some pain and discomfort, as there was with my two c-sections. It's surgery. But I guess the truth is, knowing what I know, fusion scares me, in terms of what the kids (and adults) go through those first days and weeks. Fusion certainly has its place and we are lucky we live in an age where it is available, but if it were my child I'd try to avoid it if at all possible.

    Good luck.
    Last edited by mariaf; 02-24-2008 at 08:51 PM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  8. #38
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    Quote Originally Posted by Karen Ocker
    Joe:

    All of us(patients) here have walked the scoliosis walk. Our comments are not meant to be disrespectful or overly forceful. We are trying to help others avoid the mistakes we made, money and pain we wasted, and share what worked/didn't work for us. Sometimes we wish people would "get the picture" sooner and prevent these pitfalls.

    When I was 13(1956) when scoliosis surgery was done as a last resort and involved a year in casts and not walking, our scoliosis surgeon wanted me to have the surgery in Spring. My curves had accelerated at an alarming rate and immediate treatment was recommended. My parents, who had each suffered the loss of a parent within 30 days of each other, just couldn't face the prospect if putting a "healthy" child into the hospital. My mom wanted me to "have a summer". It was the worse summer of my life. I became too deformed in that short time to enjoy any teenage experiences, I was in terrible pain and actually looked forward to having the surgery in Sept. The correction at that time was modest-because we waited too long- and lasted me over 40 pain free productive years. At 60 I had a successful revision(5 years ago) and I am now pain free and employed in the profession I love.

    This is where we are coming from.
    Karen,

    I completely understand where you and Pam are coming from and truly respect and appreciate your input. Please forgive me if I come across other than grateful. It is the prospect of these exchanges that have brought me here.
    I think you put it best here:
    All of us(patients) here have walked the scoliosis walk. Our comments are not meant to be disrespectful or overly forceful. We are trying to help others avoid the mistakes we made, money and pain we wasted, and share what worked/didn't work for us. Sometimes we wish people would "get the picture" sooner and prevent these pitfalls.
    I have to admit that after reading many of your posts, I came away with the impression that you were a bit overbearing when stating what you felt was the right path. As I said to Pam earlier, tone is hard to covey in this medium, so sometimes we must dig deeper and ask more probing questions to understand the intent behind the advice. That being said, I can relate to your dilemma; your advice is from the 'been there, done that" side of the fence and it must get awfully frustrating when we "newbie’s" show up and enter into the same pitfalls you have seen time and again. In my line of work, I operate in a supervisory/instructional capacity and when dealing with a "newbie" I sometimes get frustrated when they can't see things that, to me, are perfectly obvious. I often have to take a step back and remember where I cam from and put myself in their shoes. Experience counts for so much and that is what I value here. I may not always agree with what is said or want to hear it , for that matter (for fear it might be the truth) but most often, it needs to be said. Tough love…. perhaps? Sometimes a little push is what we need.

    Don't stop doing what you do here, just understand that sometimes we are a bit dense and often indignant..

    Respectfully,

    Joe

  9. #39
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    Quote Originally Posted by Pooka1
    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.
    Just to add to what Mariaf wrote, yes, 3 weeks is a pretty generous estimate for return to school. It happens ... but don't forget, if she's out for a longer period, you most likely have the option of homebound so S doesn't fall behind.

    Normal hospital stay (for adults or kids) is generally in the range of 5-10 days (sometimes more). I was ready to go at day 3, but due to a previous MRSA infection (years back), I was receiving Vancomycin via IV. The drug is quite caustic, and infiltrated 3 separate IV's. This caused a sudden disconnect from Dilaudid via PCA, and once the pain got out of control, they had a tough time reigning it in via oral meds. Since I obviously had no pressing engagements - and didn't want to work it out at home with the doctor
    on call - I stayed through the weekend (a total of 6 days).

    I was making phone calls the day of surgery when I woke up, but I've been told this isn't typical.

    Quote Originally Posted by Pooka1
    What is the time in the hospital and time home for VBS?
    (answered by mariaf)

    Quote Originally Posted by Pooka1
    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.
    I can assure you W will FEEL like returning to school MUCH sooner if you elect VBS vs. fusion. Fusion surgery is SO much more invasive than VBS. I can't stress that enough. Aside from MY recent surgery photos, there's a video on youtube of a pediatric posterior fusion. You can't *possibly* watch it - and watch them cranking the torso around by the rods - and compare it in *any* way to VBS.

    Quote Originally Posted by Pooka1
    Does VBS address rib rotation?
    (answered by mariaf)

    Quote Originally Posted by Pooka1
    ETA: The long term on modern spinal fusion is much more defined than it is for VBS. That is a big consideration.
    I still don't get the impression you understand that, yes, while fusion has come leaps and bounds over the years, it's no guarantee of a *cure*. Sure, it's been around longer, but it's far from perfect science. Among the monkeywrenches that can be tossed in after fusion are:

    - Crankshafting (one side of the spine continues to grow and curve)
    - Decompensation (areas above and below the fusion continue to curve)
    - Plain old hardware failure (pedicle screw pull out and rod breakage)
    - Failure to fuse ... a good percentage DO, but not all fusions "take"

    Given the choice between fusion and VBS, fusion has the posssibility of MANY more complications. THAT is a BIGGER consideration.

    Quote Originally Posted by Pooka1
    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.
    I'm not sure where you read this, but epidurals aren't at all normal after fusion surgery. For one thing, it would preclude getting the patient up and walking (they had me up the next morning after my fusion) - and that IS the goal. Walking greatly facilitates recovery: I can't imagine them using one at all, much less leaving it in.

    BTW, I had the same birth experience with my first kiddo ... 3-8cm in 15 minutes, 2 hour labor ... bye-bye epidural. Had the 2nd kid induced specifically so I could have an epidural ... slowed her down to a whopping 3 hours. My vocabulary was FAR less creative.

    Quote Originally Posted by Pooka1
    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.
    I wouldn't necessarily agree it's worse for all adults in all cases (it depends on several factors - fitness level prior to surgery being VERY high on the list), but I still don't sense you understand how serious fusion IS compared to VBS.

    By waiting for fusion (erroneously assumed as perfect science) when VBS is viable (if it turns out she's truly a candidate) you're opening her up to a whole plethora of risks SOLELY associated with fusion.

    Oh, and BTW, that "plastic surgery wound closure" can still shift, widen, go keloid, etc. There are many on here who STARTED OUT with GREAT scars (that's just how scars go sometimes).

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  10. #40
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    Quote Originally Posted by txmarinemom
    I can assure you W will FEEL like returning to school MUCH sooner if you elect VBS vs. fusion. Fusion surgery is SO much more invasive than VBS. I can't stress that enough.
    But you didn't address all the travel. It would be an easier choice if we lived in Philly or some place they do VBS.

    It is not abundantly clear to me that, when you factor all that in, W won't miss MORE school than S if she does VBS.

    Correct me if I'm wrong but you had surgery as an adult, yes? What is your experience base with kids with one curve? Also, how do you know about the range of actual experiences with VBS?

    And last, I'll point out the issue of the known unknowns for spinal fusion (some of which you mentioned) versus the unknown unknowns for VBS. It is not obvious that such types of things couldn't or wouldn't happen down the road with VBS.
    Last edited by Pooka1; 02-24-2008 at 10:42 PM.

  11. #41
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    Quote Originally Posted by Pooka1
    But you didn't address all the travel. It would be an easier choice if we lived in Philly or some place they do VBS.
    Shriners Philly is NOT the only place that performs VBS. http://www.vertebralstapling.com/Physician_List.html

    Quote Originally Posted by Pooka1
    It is not abundantly clear to me that, when you factor all that in, W will miss MORE school than S if she does VBS..
    I'm trying to tell you a child that has fusion vs. VBS will be in recovery MUCH longer. If homebound school support is not an issue, what exactly IS the issue?

    Quote Originally Posted by Pooka1
    Correct me if I'm wrong but you had surgery as an adult, yes? What is your experience base with kids with one curve? Also, how do you know about the range of actual experiences with VBS?.

    I had surgery 19 days ago.

    My experience on kids with one curve is I WAS one, diagnosed at age 10. I didn't just develop scoli at 39. I lived with the pain for 30 years until I couldn't take it anymore.

    My knowledge of VBS (among other treatments) has been gained through the many parents on the VBS list I've come to know, PubMed research, and seeking out any published VBS/other treatment data on which I can get my hands. Like it or not, my grandchildren (as are yours) are far more likely to develop scoliosis, and I make a conscious efforts to stay up to date on factual data.

    How has your knowledge of treatment methods been gained?

    Quote Originally Posted by Pooka1
    And last, I'll point out the issue of the known unknowns for spinal fusion (some of which you mentioned) versus the unknown unknowns for VBS. It is not obvious that such types of things couldn't or wouldn't happen down the road with VBS.
    Again, I think you're under the assumption fusion is a "cure" simply because it's existed longer. VBS has been around long enough for your "unknown unknowns" to have made a cameo appearance.

    BTW, check out the #19 VBS patient sometime (stapled ±5 years ago). She held to a correction with no ill effects. How new do you believe this technology actually is?
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  12. #42
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    Pooka,
    Even if you did have to travel to Philly for surgery, it is possible to go in a couple days before surgery and have all the pre-op testing done the day before surgery (they often do this for those who travel in from out of town). Many people fly home a day or two after release from the hospital from regular fusion surgery, so as long as W gets the okay from the docs in Philly, the return trip home should not be a problem either.
    She might have to make a couple return trips for follow-ups, but after a period of time you could probably arrange to have x-rays taken locally and send them to Philly to have them checked out, this way you minimize time she misses school and only have to go if they need to see her or something comes up.
    Shriners will help pay for travel if money is an issue, and there is a non-profit organization called angel flights that helps transport patients to-from doctors appts, etc. that might be able to take you to/from philly as well.
    I would talk to Janet about how much time W would actually need to miss school and how much time would need to be spent in Philly after her surgery if she is a candidate. Ask what follow ups are required and if it is possible to have x-rays sent in lieu of a formal visit at any point, etc.

  13. #43
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    Quote Originally Posted by Pooka1
    But you didn't address all the travel. It would be an easier choice if we lived in Philly or some place they do VBS.

    It is not abundantly clear to me that, when you factor all that in, W won't miss MORE school than S if she does VBS.

    Correct me if I'm wrong but you had surgery as an adult, yes? What is your experience base with kids with one curve? Also, how do you know about the range of actual experiences with VBS?

    And last, I'll point out the issue of the known unknowns for spinal fusion (some of which you mentioned) versus the unknown unknowns for VBS. It is not obvious that such types of things couldn't or wouldn't happen down the road with VBS.
    Pooka,

    First, please understand where I am coming from. If it were MY child, I'd jump at the chance for VBS (provided she was a good candidate) vs. fusion. I think if you heard more about VBS, and fusion, from parents and patients alike, you might tend to agree.

    Referring to the last line of your post above - and knowing what I know - I'd be MUCH less worried about complications after VBS than if my child was having fusion. Not trying to scare anyone, but there's NO comparison. And even though the vast majority of kids I know who that have had VBS have had smooth recoveries, there are of course some minor complications that can happen post VBS but NOTHING even remotely close to some of the more serious complications that CAN (not saying they will) happen after fusion.
    If I was told my child was a good candidate for VBS, it would be a no brainer for me if it meant a good chance to avoid fusion. The two surgeries are just VERY different.

    As far as the part about travel/missing school, that would be SECONDARY (if it were my decision) to what procedure was best for my child. I'm NOT saying that you're not putting your child's best interests first - not at all. I just think you are picturing the inconvenience of the travel, etc. as being more than it is. I know families who came from Texas, Louisiana, Nebraska and just recently a family came from South Carolina. They felt it was worth it and none regrets their decision. (As Pam said, NOW there are docs doing VBS at other centers, not just Philly). I don't think travel to Philly would hinder your daughter's return to school. In other words, if she was given the OK to return to school 2-3 weeks post op, you'd be home by then. Usually, if a family is from out of town, and let's say the child gets dischared on day 5, and that falls on a Friday, the doctor may ask that the family stay in town until Monday - and then after seeing the patient on Monday, give the OK to return home, just so they feel sure everything is OK.

    If you like, you can find most of these parents I talk about on the site Pam referenced - it's www.vertebralstapling.com

    Again, not telling you what you should do, just trying to help.
    Last edited by mariaf; 02-25-2008 at 07:03 AM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  14. #44
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    I have no experience with VBS or much knowledge about it. I can only comment on my daughter's experience with spinal fusion. They told us that the recovery is one full year. Yes, she was back at school full time before 6 weeks. But many kids take longer than that. Yes, she goes to school every day and hangs out with her friends on the weekends. But at 5 months post op, she is not allowed to do anything physical other than walk. She can't dance, bike, swim or anything for fear of an accident harming her back. Possibly at 6 months we will find out she is fused and can start moving more. At this point, I still drive her to school and she leaves each class early to avoid being bumped in the halls.

    She has two rods and 26 screws permanently in her back. She will never have a normal use of her spine like her peers who didn't have spinal fusion. She will forever have limited motion because her fuse is from T-2-L-3. I have no idea how that will play out when she goes back to her passion--dance.

    The week in the hospital was a living hell for all the pain she was in. The following week wasn't much better. At present, she is in no pain.

    When you have to do the fusion, you do it. We had no choice. I just wanted to let people know what our specific experience with spinal fusion has been so far.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  15. #45
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    Quote Originally Posted by txmarinemom
    Shriners Philly is NOT the only place that performs VBS. http://www.vertebralstapling.com/Physician_List.html

    Yes but looking at the list, they are all plane rides away. It is one of the few saving graces that money is not a problem. But that said, I'm still unsure if W would miss more school with the VBS plus travel than S will given spinal fusion in town plus what the surgeon told us in re recovery time. Now I know you have a different idea about actual recovery times. I am emailing a series of questions to the surgeon that include some very close questions on the actual range of his pediatric patients with this type of curve and when they ended up back at school full time. I'll report back. I'm still trying to wrap my mind around his blantantly misrepresenting this if he knows it isn't the case.

    I'm trying to tell you a child that has fusion vs. VBS will be in recovery MUCH longer. If homebound school support is not an issue, what exactly IS the issue?

    S will qualify for a tutor because the time out of school is continuous. W's timeout of school will be broken up with several plane trips to the VBS doctor and would not qualify. Even the trip for the operation alone is too short to qualify for a tutor. Maybe if W had the VBS during summer it wouldn't be an issue. I'm going to write to the woman in Philly to see if W is a candidate and to determine more accurately how much time she will, miss and when considering we live in Raleigh.

    I had surgery 19 days ago.

    My experience on kids with one curve is I WAS one, diagnosed at age 10. I didn't just develop scoli at 39. I lived with the pain for 30 years until I couldn't take it anymore.

    Please pardon my lack of clarity. I meant how many kids with one thoracic curve, (~48 degrees) who underwent modern surgery (i.e., last 2-3 years just to pick a number) at age ~13 are you familiar with?

    (snip)

    Again, I think you're under the assumption fusion is a "cure" simply because it's existed longer. VBS has been around long enough for your "unknown unknowns" to have made a cameo appearance.

    Just curious here... at what point in the past few years did you decide enough data were in on VBS given it has been done for ~7 years?
    (text so post will post.)

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