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Thread: My niece

  1. #31
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    Quote Originally Posted by titaniumed View Post
    I don't think that one should become overly depressed or upset because they missed the tethering window. Like Pam had in her signature, fusion is not the end of the world. Our "acceptance" of our scoliosis and its path is probably the most important thing in all of this. Rejecting fusion can lead to thoughts of pain, and just thinking about pain makes it worse.

    If one can catch a kid early, seeing a scoliosis surgeon is a must for an evaluation. Seeing a tethering surgeon is the cherry on the whipped cream if the person is that perfect tethering candidate. For tethering timing, we should call this "Dingo timing" since he and Scott had all the chips fall the right way. It looks like Scott's timing was perfect. He is coming up on a year and looking forward to seeing his new x-rays. Any post tethering x-rays from anyone will be of great interest. There was a girl with an S curve done by Dr Lonner that posted here around a year ago, I especially would want to see her x-rays since I have a S curve.

    For Kara's niece, Dr Diab in San Francisco (UCSF) is the closest tethering surgeon in Northern California. With insurance, staying in your home state is advantageous, California being just about the whole west coast of the US is a good state for this reason.

    Tethering (VBT) and Stapling (VBS) pediatric surgeon list.
    https://pediatricspinefoundation.org/physicians/

    Ed

    Missing the tethering window is huge as VBT has got to be the better option to fusion. It is much less invasive and leaves the spine flexible. The more that make the window the more info we will get into how wide the window can get in the future. Kids wont have to go through so long a bracing period if any and hopefully we wont end up with so many adults with untreated scoliosis! Seeing an orthopaedic surgeon for an evaluation is ikely to lead to a path to fusion because most don't know or want to know enough about VBT. In US you have more option to choose from the start who you see?
    Last edited by burdle; 06-06-2019 at 09:39 AM.

  2. #32
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    Quote Originally Posted by Pooka1 View Post
    I think most if not all T scolioses come with a compensatory lumbar curve as the spine strives to maintain balance. That is not a structural curve and will disappear some/mostly/completely as the T curve is straightened. There is no lumping functional and structural curves. They are completely different. If a person has a structural T curve and a functional L curve then they ONLY have T scoliosis. There is nothing wrong with their lumbar. If a person has a structural T curve and a structural L curve then they have a double curve. Only structural curves need to be fixed as the functional curves straighten themselves spontaneously to balance the straightened structural curve. This happened in both my daughters by the time of the first post-surgical erect radiograph on day 3 or 4 which is pretty good evidence that functional curves are only balancing a structural curve and are not real curves.

    Structuralizing a previously functional lumbar curve associated with a structural T curve can happen in several instances including...

    1. the T curve was never straightened surgically (i.e., went untreated)
    2. the T fusion extended past about L1
    3. the T fusion did not straighten the T curve enough to drive enough straightening in the initially functional lumbar curve



    What do you mean by success? Success would include addressing both the T curve and protecting the lumbar. Certain cases of fusion can do that. I don't think they know yet if tethering can do both. They may be winning the battle of the thorax but losing the war of the lumbar.



    Yes there is. I posted a case study from Dr. Hey where a woman who only had a structural T curve went on to convert her previously only functional L curve to a structural L curve through no fault of her own... her T curve was below the surgical threshold. She was screwed and destined to have her L curve structuralized because her T curve never reached the surgical threshold. Had they lowered the threshold and straightened her T curve, maybe she never would have had her L curve structuralized. Who knows. The point is all T curves potentially endanger the lumbar if not corrected.

    That is why I consider T curves to be emergencies. The lumbar is in potential danger.
    Hi- you are fusing Functional scoliosis with Compensatory. Functional scoliosis is a different TYPE of scoliosis- it is where there is no structural curve in the spine only something that make it appear so such as leg length discrepancy. Once the external factor is corrected so does the scoliosis. A compensatory curve is a real curve but most often will self correct if the structural one is corrected BUT can become structural over time if left. because VBT is done SO MUCH EARLIER during growth very often there is no compensatory curve because it has not had time to develop. I say again there is no lumbar to protect. However if there is a lumbar curve VBT surgeons are doing tethering on the T curve and if necessary ASC on the lumbar curve if structural or sometimes 2 tethers on the lumbar ( not the same as a double tether) to correct it.

    Oh and by the way - Newton is completely impartial regarding VBT now- ( motives not known) if you want latest news you need to talk to Trobish, Antonacci, Betz and others- They have not published results so lots of existing data now out of date. SRS is still not upto speed but I gather at the latest conference there were very successful presentations on VBT
    Last edited by burdle; 06-06-2019 at 09:56 AM.

  3. #33
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    Quote Originally Posted by Pooka1 View Post
    But don't the ABC doctors do ASC on kids?
    Yes they do but this is when they don't anticipate enough growth left for VBT

  4. #34
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    Quote Originally Posted by titaniumed View Post
    It looks like its mostly about the timing.... How interesting that you have to get that correction to relieve the pressure on the tether so it wont break.

    So, age 13-14 looks like the optimal age? Males perhaps a year or two later....

    Ed
    No its earlier - especially in girls. VBT is done when plenty of growth left - before the final growth spurt

  5. #35
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    Quote Originally Posted by burdle View Post
    Hi- you are fusing Functional scoliosis with Compensatory. Functional scoliosis is a different TYPE of scoliosis- it is where there is no structural curve in the spine only something that make it appear so such as leg length discrepancy. Once the external factor is corrected so does the scoliosis. A compensatory curve is a real curve but most often will self correct if the structural one is corrected BUT can become structural over time if left. because VBT is done SO MUCH EARLIER during growth very often there is no compensatory curve because it has not had time to develop. I say again there is no lumbar to protect. However if there is a lumbar curve VBT surgeons are doing tethering on the T curve and if necessary ASC on the lumbar curve if structural or sometimes 2 tethers on the lumbar ( not the same as a double tether) to correct it.

    Oh and by the way - Newton is completely impartial regarding VBT now- ( motives not known) if you want latest news you need to talk to Trobish, Antonacci, Betz and others- They have not published results so lots of existing data now out of date. SRS is still not upto speed but I gather at the latest conference there were very successful presentations on VBT
    As far as I know, functional and compensatory are entirely synonymous.

    Tethering does not generally straighten the non structural lumbar as much as fusion. That is why they are measuring the non structural lumbar curves under structural curves in these studies. It may be that these kids will avoid T fusion only to need treatment for their lumbar later because the tethering didn't drive enough straightness thru the nonstructual lumbar.

    You cannot assume just having somewhat more ROM in tethering is necessarily better for the discs. If we could assume that then we wouldn't need studies. These guys are explicit in saying it is unknown if tethering will cause damage to the discs or let the lumbar become structural.

    The fact that tethering leaves much more rotation than fusion is one issue that was mentioned in the cosmetic realm but it may ramify in the medical realm also.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #36
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    Quote Originally Posted by burdle View Post
    Missing the tethering window is huge as VBT has got to be the better option to fusion.
    If it has got to be better than fusion then why are they studying it and why is fusion still the gold standard? It sounds like it will pan out for a small minority of kids but we won't know that for years.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #37
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    Quote Originally Posted by burdle View Post
    Missing the tethering window is huge as VBT has got to be the better option to fusion. It is much less invasive and leaves the spine flexible. The more that make the window the more info we will get into how wide the window can get in the future. Kids wont have to go through so long a bracing period if any and hopefully we wont end up with so many adults with untreated scoliosis! Seeing an orthopaedic surgeon for an evaluation is ikely to lead to a path to fusion because most don't know or want to know enough about VBT. In US you have more option to choose from the start who you see?
    Its only huge for the perfect tethering candidate that misses that chance.

    For an 11 year old, when you think about growing rods and all the revision surgeries, I agree....for someone older, past the growth spurt, no. Kara's niece is not a candidate, so you wouldn't want to pump her full of hope only to be let down if fusion is the only answer. 11 is young, discussing surgical methods in detail with someone this young is probably not a great idea especially if there is some doubt as to exactly what will happen. Not all patients are tethering candidates, and that means that the rest will be fused.

    We might have more options, but still there are 40 million people in California alone and routing all tethering potentials through just a handful of tethering surgeons sounds like quite an overload.....Its doubtful they could handle it. When launching a new product, it really needs to work and work well (unless your writing software)
    When things go wrong or there is doubt, it has a tendency to slow things down.

    Fusion does work, as long as one fuses. I have no pain with the joints in my spine. Its the soft tissue damage and related scoliosis surgery complications that one has to worry about....Open scoliosis surgery is invasive, no doubt. Its serious surgery.

    On the tethering window, I can imagine that the timing and age is critical. I picked 13 and probably should have subtracted a year. It was the over-correction of tethering too early that I was thinking of....

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  8. #38
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    Quote Originally Posted by titaniumed View Post
    On the tethering window, I can imagine that the timing and age is critical. I picked 13 and probably should have subtracted a year. It was the over-correction of tethering too early that I was thinking of....
    It seems like this is really trying to thread a needle by getting a kid with just the right amount of growth left... too much and there is over-correction. Too little and it will not work. That is probably the reason only a minority of patients qualify. These surgeons want tethering to be an option and it seems like they are really trying to pick patients where it will work. For Newton, that is 1 out of 5 kids at present. So it may pan out for that 20% but what about the other 80%? Well they have fusion which for T curves is probably a similar ROM as tethering.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #39
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    Unless you have Dingo timing, (Perfect timing) and your kid has scoliosis, the only way to make sure you get that chance is to be active and seeing a tethering surgeon on a regular basis. It could take a few years. My talks on my surgeries went on for 2-1/2 years before I committed.

    Everything to do with scoliosis seems to require a lot of waiting and a lot of patience....unless you discover a huge surgical curve for some reason. I always think of Elias when Spiny Mouse posted his 110 Deg T curve (Age 15) x-ray years ago. Remember that? He went straight into traction when his surgeon said come right away. He probably set a progression record that last year, this is why its important to follow up with a scoliosis surgeon especially through the growth curve.

    I don't know what frequency kids need to be x-rayed through aggressive growth curves? My guess is every 6 months. Linda would know...

    I was too late. I was 16 and 4 months with my 1st x-ray. (after a car crash)

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  10. #40
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    Quote Originally Posted by burdle View Post
    Oh and by the way - Newton is completely impartial regarding VBT now- ( motives not known) if you want latest news you need to talk to Trobish, Antonacci, Betz and others- They have not published results so lots of existing data now out of date. SRS is still not upto speed but I gather at the latest conference there were very successful presentations on VBT
    Forgot to address this.

    "Newton is completely impartial regarding VBT now- ( motives not known)"

    i don't understand what you are saying here. Motives??? His motive is trying to help kids including Dingo's kid. Do you mean he has cooled a bit to tethering based on taking only 1 in 5 kids? I think he is doing that to increase his success rate and decrease his complication rate with tethering.

    And I don't think he is impartial. I could be wrong but I think he made a tethering disclosure. Not sure.

    Newton is out there presenting his data as of last year and I bet he will do so this year. So are a few others. I don't recall Trobish, Antonacci, Betz and others presenting data at the most recent SRS and IMAST meetings but Betz at least certainly publishes. Newton and others who do present and publish a lot are involved in studies. Not sure the ABC doctors are doing studies. If not then there will not be data from them.

    SRS accepted tethering abstracts at their 2018 meeting and I bet they accepted tethering abstracts at their 2019 meeting. They are COMPLETELY up to speed. Not sure what you mean here.

    In re tethering talks, I watched all of them. There is a note of cautious optimism but they emphasize tethering it not right for many kids and that the future is completely unknown.

    And once again, virtually all T curves are accompanied by a non-structural L curve. These non-structural L curves are being measured in these tethering studies. There is a reason for that. The reason is they are seeing if tethering can avoid future lumbar structuralization like fusion can avoid future L structuralization in certain cases. Even if tethering works for the T curve, if it toasts the L curve, I think we can agree it is no solution. This is what I mean by saying fusion is a no brainer if fusion can save the lumbar and they don't know if tethering can save the lumbar. It is presently completely unknown what tethering does to the lumbar. That is nerve racking.
    Last edited by Pooka1; 06-07-2019 at 07:54 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  11. #41
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    Quote Originally Posted by Pooka1 View Post
    Forgot to address this.

    "Newton is completely impartial regarding VBT now- ( motives not known)"

    i don't understand what you are saying here. Motives??? His motive is trying to help kids including Dingo's kid. Do you mean he has cooled a bit to tethering based on taking only 1 in 5 kids? I think he is doing that to increase his success rate and decrease his complication rate with tethering.

    And I don't think he is impartial. I could be wrong but I think he made a tethering disclosure. Not sure.

    Newton is out there presenting his data as of last year and I bet he will do so this year. So are a few others. I don't recall Trobish, Antonacci, Betz and others presenting data at the most recent SRS and IMAST meetings but Betz at least certainly publishes. Newton and others who do present and publish a lot are involved in studies. Not sure the ABC doctors are doing studies. If not then there will not be data from them.

    SRS accepted tethering abstracts at their 2018 meeting and I bet they accepted tethering abstracts at their 2019 meeting. They are COMPLETELY up to speed. Not sure what you mean here.

    In re tethering talks, I watched all of them. There is a note of cautious optimism but they emphasize tethering it not right for many kids and that the future is completely unknown.

    And once again, virtually all T curves are accompanied by a non-structural L curve. These non-structural L curves are being measured in these tethering studies. There is a reason for that. The reason is they are seeing if tethering can avoid future lumbar structuralization like fusion can avoid future L structuralization in certain cases. Even if tethering works for the T curve, if it toasts the L curve, I think we can agree it is no solution. This is what I mean by saying fusion is a no brainer if fusion can save the lumbar and they don't know if tethering can save the lumbar. It is presently completely unknown what tethering does to the lumbar. That is nerve racking.
    I suggest you take a look at the Facebook sites. certainly not everyone who has VBT has a compensatory structural curve. When I was 30 I ONLY had a thoracic curve - my compensatory curve came 3 years after that.

    As for Newton again talk to those in the know on the Facebook sites. Apparently Newton is not pro VBT - his surgeries in its early days were done with a different tether from the ones used today but his is one of the few published studies so still gets referred to. but that does not take into account the latest info- as I said ABS et al have not published data but success stories abound on Facebook . As far as I am aware Newton does VBT but under very strict parameters. ? Certainly the SRS site along with the BSRF and SAUK UK sites gives cursory attention to VBT for patient info. And there are a lot of surgeons STILL who claim all sorts or erroneous 'facts' about VBT so yes I find myself questioning their motives about not getting up to date.
    Last edited by burdle; 06-07-2019 at 09:28 AM.

  12. #42
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    Quote Originally Posted by burdle View Post
    I suggest you take a look at the Facebook sites. certainly not everyone who has VBT has a compensatory structural curve. When I was 30 I ONLY had a thoracic curve - my compensatory curve came 3 years after that.

    As for Newton again talk to those in the know on the Facebook sites. Apparently Newton is not pro VBT - his surgeries in its early days were done with a different tether from the ones used today but his is one of the few published studies so still gets referred to. but that does not take into account the latest info- as I said ABS et al have not published data but success stories abound on Facebook . As far as I am aware Newton does VBT but under very strict parameters. ? Certainly the SRS site along with the BSRF and SAUK UK sites gives cursory attention to VBT for patient info. And there are a lot of surgeons STILL who claim all sorts or erroneous 'facts' about VBT so yes I find myself questioning their motives about not getting up to date.
    I can't look at the FB site because it is closed and I have no reason to join. Instead I read Spine articles, read SRS and IMAST and POSNA abstracts, and watch recorded meeting presentations.

    If the other surgeons are not turning away 80% of kids like Newton does then I assume they have lower success rates and higher complication rates than Newton. Newton is appears to be trying for the highest success rate and lowest complication rate by only taking perfect candidates.

    Again, I am pretty sure Newton disclosed a financial stake in tethering so he is going to do everything possible to make this work in addition to wanting to help these kids out of compassion.

    On the FB group, do the people whose kids failed tethering or were turned down for tethering post? I think you are dealing with a very unrepresentative patient group over there. And like here, no more than a small handful of those parents probably understand these issues.

    Again, I would like to see a T curve without at least a non structural L curve. There are a few pure T but they seem rare and certainly not the norm. All these studies include measurement of the nonstructural L curve under a structural T curve so most patients must have that. That comports with virtually every radiograph I have seen posted here.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  13. #43
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    Pros and Cons of Tethering Dr Luhmann ( Easy reading for parents and patients)

    https://www.stlouischildrens.org/hea...ring-scoliosis

    Interesting that he mentions possible disc herniation's resulting from the long term compression of the tethers.

    I have battled multiple herniation's (6 diagnosed) through the years, they are incredibly painful, and this is what drove me into my scoliosis surgeries. They can affect everyone on the planet with or without scoliosis....I have herniation's in my neck which has no scoliosis or abnormal shape, no tethering, and no fusion. My scoliosis surgeries were a huge success, but I am not running into neck surgery.

    Disc health is probably one of the most important areas of study they need to focus on. It affects all of us.

    Spine and Scoliosis are desperate sorts of things when problems arise, it reminds me of the CBD explosion that is happening right now. They had a meeting with the FDA last week, and they basically know nothing. They acknowledged they no nothing. Its crazy that everyone is promoting CBD now as this miracle, the only thing that has been proven is its use for rare forms of Epilepsy. If they find out it does damage to an organ, I can see this balloon popping.
    https://www.fda.gov/news-events/pres...e-severe-forms

    I did take a dose of liquid CBD 2 weeks ago, (A friend bought it for me) and the exhaustion was overwhelming. I took it at 9PM under the tongue, and the next day I had to sleep through the day. I wonder why I was so exhausted, was this my body filtering out this CBD? Who knows? Was this a healthy thing? I guess I could have increased the odds by taking CBD on a cruise to the Dominican Republic. A triple whammy.

    As soon as there is any sort of positive result in any area, people hype and jump on the bandwagon without proof. The first spinal tethering happened in Poland around 70 years ago, they inserted coil springs (I have photos) with devastating results....Braces and racks have been around for centuries. All sorts of miracle cures....

    Whats funny is that none of this is any cure. You have to wonder if most wasted their time with scoliosis for thousands of years. In reading all the testimonials for all these years, I cant help but be skeptical.... We do a lot of shooting off the hip....Our bodies are so complicated.

    And its amazing what we know, and what we don't know. The waiting for cures puts tears in my eyes. I am tired of waiting.

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  14. #44
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    Quote Originally Posted by titaniumed View Post
    I guess I could have increased the odds by taking CBD on a cruise to the Dominican Republic. A triple whammy.
    I actually did laugh out loud at this! Although it isn't technically funny.

    My husband goes to the DR several times a year on business and often stays at resorts on the weekends. I told him to lay off the minibars. He also goes to Puerto Rico several times a year and Costa Rica about monthly on business. He volunteered to support the CR factory because nobody else was helping them. It is so bad getting people to go there for some reason that he was actually on the team to assess the factory that he is helping. I bet it got a good review score. LOL.

    I agree that all these treatments are never going to substitute for a cure. They need to find the cause and fix it before it gets to the point of needing treatment.

    And the potential damage to the disks scares me. I don't have scoliosis and herniated 2 discs. I am very very very scared that these tethered kids are going to be dealing with disc herniation in the future.
    Last edited by Pooka1; 06-08-2019 at 05:51 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #45
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    Quote Originally Posted by burdle View Post
    Yes they do but this is when they don't anticipate enough growth left for VBT
    How EXACTLY is ASC different than tethering? It looks and sounds like the same based on this page with the exception of surgical access point.

    https://www.spineandscoliosis.com/an...orrection-asc/

    Where on that page do they CLEARLY explain the difference between ASC and VBT?? I am guessing they are doing osteotomies but they never seem to say it. Or they are just taking all patients irrespective of if they are likely to be successful.

    Here is their description of ASC...

    Titanium pedicle screws are placed on the convexity (outside) of the vertebrae that are causing the scoliosis; a a rod-cord ( white polyethylene-terephthalate flexible cord) is attached to each of the bone screws in the vertebral bodies of the spine. When the implants are tightened, it corrects and straightens the spine. The affected curve(s) show an immediate improvement right after surgery, and continued improvement over time as the spine remodels.
    That is ALSO the description for VBT, no? How is it different??

    Here is Lonner saying ASC = VBS which at this point is a penetrating glimpse into the obvious...

    Anterior Scoliosis Corrective Surgery (Also Known As “VBT”)

    https://www.scoliosisassociates.com/...ctive-surgery/
    Last edited by Pooka1; 06-08-2019 at 05:18 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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