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Thread: Congenital Scoliosis - T4-T5 in teenager

  1. #31
    Join Date
    Nov 2011
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    New Albany, Indiana
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    25

    You guys are awesome!

    Thank you, everyone, for all of your comments, encouragement, advice, experiences, and more.....I know how blessed we are in our situation.

    Our son has no pain whatsoever with his scoli. Some time ago, I had noticed that one of his shoulders always seemed so "hard" and I assumed he had a trigger point, or tightened muscles. I would try rubbing it out for him, but he wouldn't like it, so I'd stop. I noticed, too, that one shoulder was a little higher than the other, but never paid too much attention to it. I NEVER see him without his shirt, and he NEVER sits still.....so I never saw just how MUCH higher the one shoulder was than the other.

    This fall he started in ROTC and needed a complete physical. During that exam, his doctor found two areas of concern - one being the raised heighth of the one shoulder. He was sent in for xrays - had those on 10/25/11 - and you know "the rest of the story"......

    I DO feel we need to go to Shriners - just to get that second opinion....My question for those of you who have been dealing with this far longer than I, is this - do we wait until the next set of xrays in February and see what's going on???? Or should I go ahead and get going on making appointments with Shriners ASAP? I'm assuming there will be a wait.

    Oh, and by the way - the hardness I was feeling in Samuel's shoulder .......that is his ribcage!!!

    sigh....

    thanks again....
    blessings...robin

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  2. #32
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    Mar 2010
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    Quote Originally Posted by robinlbe View Post
    Oh, and by the way - the hardness I was feeling in Samuel's shoulder .......that is his ribcage!!!

    sigh....

    thanks again....
    blessings...robin
    That explains why he didn't like you trying to rub it out!
    I had a very elevated shoulder as well (the shoulder is dropping as my other curve is progressing) and my shoulder is very hard. I do have trigger points there, but the mass is so hard that the doctor can't break it up. My top curve is from T-1 to T-6. I don't know where it used to end. I think it was tighter when I was younger, but it is a larger curve now. I wish I had the answers to your other questions. My mom had the offer to take me to Shriner's when I was a kid, but she said no and took me to a clinic in Phoenix. So I don't have any experience with Shriner's or congenital scoliosis.

  3. #33
    Join Date
    Mar 2011
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    3
    Robin,
    I would begin the process for Shriners if you are considering changing to them. If I remember correctly, we applied in September which gave us appointments in February. It was just a few hours away for us which we could easily do in a day so distance is something to consider.
    Son- diagnosed at 14- leg length discrepancy 1.5cm & 16 degree scoliosis- released from doc at 16
    Daughter- diagnosed at 11/surgery at 13; incarcerated hemivertebrae T7

    Fused T4 to L3
    pre-surgery T51 L38
    post surgery T35 L 0

  4. #34
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    Nov 2011
    Location
    New Albany, Indiana
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    25

    T3-t4

    It probably doesn't matter much, but I just reread the report.....my son's hemi is in the T3-T4 (I originally thought it was T4-T5)
    Merry Christmas, everyone!!

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  5. #35
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    Dec 2009
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    Norwich, UK
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    Hi Robin,

    Thanks for posting that xray, very interesting! I can see why his shoulders are so uneven - that's a really high curve, and has the characteristic sharp angle you see with scoliosis caused by hemivertebra. I also have one shoulder higher than the other, though not as much as your son's, and have the 'hard shoulder' feeling - didn't know it was my ribcage until I saw an xray either! My muscles on that side are quite tight, and I do get a lot strain and neck pain, which I think is because my neck is at a slight angle - here's an xray to show you what I mean http://i390.photobucket.com/albums/o...llyzippy/6.jpg

    Pooka, some types of congenital scoli are extremely progressive. The problem with things like hemivertebra is that the malformed side doesn't have any growth plates, so the formed side grows as normal while the other side has no growth potential at all. It's for this reason that bracing doesn't work for congenital scoliosis. Different types of congenital malformations have different prognoses - this website explains it all better than I can! http://www.rcsed.ac.uk/journal/vol47_2/4720004.html

  6. #36
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    Nov 2011
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    New Albany, Indiana
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    What a great article, Mustang. Thanks! My heart just broke when I saw the picture of that young girl...I realized that my son has nothing to worry about compared to her. I just hope the worst is behind him....and it all happened before we even knew about it.

    Thanks for sending through the xray of you, Mustang.

    blessings....robin

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  7. #37
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    Nov 2011
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    New Albany, Indiana
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    Shriners in Philadelphia!!!

    Based upon your advice on this forum, I *did* send an email to Janet.....sent her a copy of the xray that I posted on here, as well as the information about Samuel. Asked her if we should consider a second opinion from the specialists at St. Louis or Philadelphia.

    Well, I just heard from her today.....and YES! She feels that Samuel VERY much needs a second opinion, and from Dr. Betz!!!!
    So, I am in the process of filling out the form, and will fax it to them.
    and then see what happens.

    I am SO, SO, SO grateful to all of you and your advice, your experiences (although I wish you hadn't had to go through all of it), and for your willingness to share.

    (hopefully you'll never, ever need it....but I am on another forum very simliar for breast cancer....two years ago today, I had my major surgery - bilateral mastecomy - so I have been cancer free for two years!!! And I received so much advice, help, encouragement and more from that forum!!!)

    Anyway, couldn't wait to let you all know that we will be Philly-bound at some point....
    Thanks again.

    blessings...robin

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  8. #38
    Join Date
    Aug 2011
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    18
    I think all have had great input as for what you could possibly do next. I know you have so much to deal with! I just wanted to say that I am 29 and was born with congenital scoliosis. I believe someone spoke of it being more serious in infants, and that was more the case with me. I was born with the congenital scoliosis due to a hemivertabrae (which was only recently truly explained to me - for a very long time I didn't understand many of the technicalities and still don't on some of them), and I was also born with tetralogy of fallot. It's a major heart defect which includes a hole in the heart and a poorly functioning valve, to make a long story short. So when you ask if there can be other problems (kidneys, lungs), I have heard that as well and it was the case with me. However, they knew of both problems as soon as I was born. They didn't just pop up after some time. The heart problems were just more pressing and pushed the back problems aside under they had it under control and did some repairs (ages 1, 3, and 5). The back wasn't addressed until I was 7 when rods were put in, and then two years later at 9 when additional fusion was done. I do experience quite a deal of pain now; however, I don't believe that's necessarily the case for everyone, especially your son. He sounds quite active, and all I could really say is continue to encourage this and anything that will help him stay more flexible. I now have problems with herniated discs and more, but my scoli dr has pretty much told me a lot of my pain will not go away because it's residual from my fusion surgeries. But he did point out that if they were to do it all over again, they would remove that hemivertabrae like you're talking about instead of putting the rods in that they did. It was the rods and the other parts of the fusion that is more what I'm dealing with now. However, I can't complain because that was the best option back in the 80s, I guess :-) For now we'll deal with the occasional injection and as much exercise as possible and try to find those who are now dealing with congenital scoli into adulthood. I do struggle at times with accepting that it's affecting my life in this way, but I know mine was a severe case. And I do have a wonderful life, and your son will also. My parents were my best advocates and got me the best care around (KUMed), and I am now a teacher, wife, and proud mother of two very active, healthy children.

    So hang in there to you and your family. Take care!

  9. #39
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    Nov 2011
    Location
    New Albany, Indiana
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    Philly Shriners on June 5th

    HeatherD, Thanks so much for sharing from your personal experience. I am so sorry you have gone through so much. At only29 years of age, and with so much pain and herniated disks, that's just too much

    Samuel had his second check up with the Louisville spinal surgeon a few weeks ago. The xray showed NO progression from three months ago!!!!! Lots of prayer have been going up for him, so I feel this was indeed an answer.

    He is experiencing pain in the front of his right lung (the side where it's contorted, and his rib is up at his shoulder) during running. His pediatrician is sending him to a pulmonary specialist just to make sure there's no impingment ro anything. The spinal doctor, cockily stated that there was no way his scoliosis could be affecting his lungs, but we would rather be safe than sorry.

    This last visit I didn't care for the way the doctor treated us. I had a lot of questions. I would ask a question, and then the doctor would basically laugh it off. He would turn to my son and ask him if HE had a question, and of course my son didn't. Then I would tell him that I had *another* question. I would ask it, and he would pretty much laugh it off. I'm really rather frustrated with this.

    We DO, however, see Dr. Betz, HIMSELF on June 5th. Dr. Betz, when he saw Samuel's xray, asked to be the doctor to see and examine Samuel. It turns out that apparently he, too, has a very similar congenital hemi in nearly the same spot.

    Anyway, so that's our update. Not much of one, I realize.....
    Hope all are doing well....think of all of you often.

    blessings...robin

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  10. #40
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    Nov 2011
    Location
    New Albany, Indiana
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    June 5th to see Dr. Betz...

    .....is just in a few days....

    Samuel is still doing well, although he has had more pain lately. However, those days were the ones where he had to stand excessively.
    I've really noticed lately that in the mornings and evenings, his right shoulder is considerably higher. I'm attributing it to him being tired, and not adjusting for his posture. I just hope the curve hasn't progressed more.

    Guess we'll know more in a few days.

    I'm a little anxious, nervous, and excited to meet Dr. Betz and have him examine Samuel.

    Our pediatrician is afraid that this hemi and the resulting curve is affecting our son's heighth growth....it makes sense, I would think.....
    thoughts???

    I'll update everyone when we return from Philly.

    blessings...robin

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  11. #41
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    Jun 2011
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    Hope all goes well

    God Bless
    Melissa

    All surgeries are on hold right now

  12. #42
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    Feb 2012
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    11
    i've just read up and i hope all went well! i'm interested to see what dr. betz thought.

  13. #43
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    Nov 2011
    Location
    New Albany, Indiana
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    25

    New Development - syrinx!

    Not sure anyone will see this.....but after our visit with Dr. Betz in June, we had the MRI done a few weeks ago. Just found out yesterday there is a syrinx.

    Now, first of all, please realize, I KNOW how very blessed we are that Samuel has ONLY one hemi and ONLY one syrinx.....after reading on this forum, on the yahoo page, being on the Facebook group, I have seen how much some of you have gone through with your kiddos. I have learned so much from all of you and your experiences, and I do realize that our situation is not nearly as severe. Nevertheless, we are still having to be seen by doctors, still having to consider surgery, make decisions, etc. sigh.....

    and I am looking to you all and your wealth of knowledge.....

    At Dr. Betz's visit, Samuel's curve was measured to be between 42-46 degrees. His Rissar is 4. He was 5'6.5" in June. He was 5'7" yesterday.
    His hemi is at T4.
    Dr. Betz's recommendation is IF the curve gets to be 50 degrees, we'll do surgery, fusing from T1-T8.

    The MRI showed a "think syringohydromyelia beginning at inferior T7 and extending to T9. Syringohydromyelia is also visulized between C5 and T1."

    Our peditrician will be sending us to a neuro-surgeon - Dr. Thomas Moriarty, in Louisville, kY.

    (I have decided to NOT return to Dr.Mitch Campbell in Louisville, KY at the Leatherman Spinal Clinic, due to his attitude. He actually laughed at some of the questions I had at our February visit. He didn't order full spine xrays, didn't check growth plates, didn't order an MRI, said surgery would never be necessary, etc.) He, in not so many words, told me I was worrying too much!!!! Well, the only doctors in this area who work with spinal issues are in the same group - so due to medical ethics, I wouldn't be able to see any of the other doctors, who actually have more experience working with kids!!!!!!!!! grrrr.

    My only qualm about going to PA and using Shriners for surgery is that the doctors are reimbursed by manufacturers of materials used in surgeries....and that bothers me quite a bit.

    OK, so that's the update.

    thoughts, advice, your experiences??????

    blessings...robin

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  14. #44
    Join Date
    Aug 2004
    Location
    ny
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    1,757
    Quote Originally Posted by hdugger View Post
    You have absolutely the best doctor for kids out there. I understand the concern about where the money is coming from, but all of these doctors get paid one way or another for performing surgery. While there are one or two that money seems to have a little surgery-happy, Betz absolutely is not one of them. He's doing his best to keep kids from having surgery.
    Unfortunately, as hdugger says, the doctors get paid one way or another - or maybe a better way to put it would be that the money to perform these expensive surgeries has to come from someplace. Private donations are not enough, I'm guessing, to cover what it costs to run a hospital on an annual basis and perform hundreds of surgeries each year.

    That said, there has to be 'some' material used in the surgeries, so the fact that a manufacture pays to have theirs used does not mean it isn't the best material out there. From what I have seen in the past 8+ years, I would never believe that money would be a deciding factor for Dr. Betz if it wasn't in the best interest of his patients to use such material.

    Robinlbe - While I don't doubt that it's true, can I ask where you heard this about the manufacture reimbursing the doctors? (Just curious - I always like to learn as much as I can!). Thanks.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  15. #45
    Join Date
    Dec 2011
    Location
    Toronto
    Posts
    27

    Congenital Scoliosis

    Hi There,
    I am 43 yrs old male with congenital scoli, hemi-vertebra at T7 and a couple of fused verterbrae. Never knew I had this problem till I started evperiencing weird symptoms like bladder problems, pain, inablity to sit etc. I have a 72 deg lumar and 40 deg Thoracic plus Kyphosis. No issues with the cord except some stenosis.
    I am undergoing surgery this Aug 15. First surgery. I can share my experience post surgery (if I make it back in one piece ).
    Congenital scoli is normally very poorly understood. All the 3 surgeons that I consulted recommended surgery because of the pain and gradual nuerological issues.
    My take is that I have no regrets that I did not undergo surgery any earlier. I had a pretty normal life till I was 42. If symptoms
    start showing up then it makes sense to do something about it.

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