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Thread: New here and daughter just diagnosed in December

  1. #31
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    Quote Originally Posted by Pooka1 View Post

    I was mostly fine for about 20 years after the disc healed. I re-started my riding in 2003 and was fine riding at least 5 times a week for most of that time. I was felling some instability for maybe a year or two before the disc blew last March. I am still dealing with the recovery only because I didn't rest it fully and refused to stop riding completely for the 3 or so months it would have taken to heal if it was like last time. I throttle the riding back and the disc recovers some and then I feel better and do more riding and then relapse. I have had one major relapse but other than that it has been a slow improvement. If I took more ibuprofen for inflammation as opposed to pain I think I might be healed by now. It's just I don't like taking meds if I am not in pain but I should have in this case.

    Is your daughter able to ride with the disc injury? What did her surgeon say?
    She is able to ride. Doctor knows that she rides as he has treated her for a fractured wrist and sprained ankle in the past (wrist injury was from playing red rover at school so non horse related!). He told her to only limit her activities based on her level of pain. She did stop riding for about three weeks around Thanksgiving when the pain was the worst. It has only bothered her once since then while riding. Good or bad, she has a high pain tolerance so I can't always trust what she tells me in terms of pain.

    I fell off a horse 10 years ago. Fractured my arm near the rotator cuff. I had just finished healing from that injury about three months after when I woke up one morning and couldn't get out of bed by myself. Found out I had a herniated disc. My back had been hurting but I ignored it. I know the disc injury had to be from the horse fall, as I had foolishly grabbed an outside bar in the arena to catch myself when I went down. I ended up twisting by body badly. When I walk and remember to hydrate as Ed mentioned, I usually do fine now. However, when I get too busy and don't take care of myself, I start feeling the pain down my leg. I'm just recovering from a bad bout of it now, and I try to take the ibuprofen religiously until the pain fades. When the pain was at its worst, I would take pain medication at night so that I could sleep. I do believe the ibuprofen helps tremendously. I have tried riding since, but I'm a beginner rider at best and my daughters' horses are much too advanced for me to ride now. I hope you start feeling better soon!

  2. #32
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    Quote Originally Posted by emybr View Post
    Good or bad, she has a high pain tolerance so I can't always trust what she tells me in terms of pain.
    For people who are into it, riding can be more compelling that pain. :-)

    I hope you start feeling better soon!
    Thanks so much! Same to you.

    BTW, I added some text to the post above about Sally Swift.
    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."

  3. #33
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    Jan 2013
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    I may look into Boachie. My son has an apartment in Connecticut and is not far from New York City. I just dread having to go there. I'm not a big city person and neither is my daughter. We've both visited once, and we got very anxious with so many people. My son, on the other hand, loves it!

    I read about Sally Swift a couple of days ago, and I plan to get some books for my daughter on Centered Riding. My son is a musician and he takes Alexander Technique lessons to help with his posture. He tried to get my daughter to go with him for a trial lesson over the holidays, but she refused. She's very much like my husband and not very open to trying new things. I'm going to try to talk with her more about it. I have to take things slowly with her (just like hubby!). I find you have to introduce new concepts gradually until they believe it was their own idea! It also usually helps if I can get someone else to help reinforce the idea.

  4. #34
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    I known some riders claim Alexander technique is very beneficial for their posture on and off the horse. So that is probably a great suggestion given balance is everything.

    I am off to do hill work with my horse. Sunday is hill work day. :-)

    ps. I am from NYC but I understand your reaction to it. Maybe Boachie would do a phone consult with radiographs and medical history in hand?
    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."

  5. #35
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    There is also Dr Hostin in Plano, Tx.....he worked with Dr Shelokov years ago......
    http://www.consultingorthopedists.com/meet-us.php

    Ed
    49 yr old male, now 58, the new 53...
    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

  6. #36
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    Jan 2013
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    Ed,

    Did you get a chance to look at her xrays? If so, any comments? I'm nervous about posting them (I have a hard time looking at them myself), but I would really appreciate any comments/opinions about them.

    Thanks!

    Emy

  7. #37
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    Here's an older thread with some suggestions of surgeons in Houston, if that helps any. I know that one poster who used to be very active on here, TXMarineMom, had Darrell Hansen as her surgeon and thought he was really super.

    http://www.scoliosis.org/forum/showt...ght=dr.+hansen

    I know it's in the revision area, but Dr. Hansen did regular surgeries, I'm sure including adolescents, and probably so did the others. If they are near enough for you, you, you might check them out.
    Last edited by Susie*Bee; 01-13-2013 at 12:02 PM.
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  8. #38
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    Quote Originally Posted by emybr View Post

    Did you get a chance to look at her xrays?
    I had a feeling that she didn’t have the standard T curve, and that it was lumbar related.... What levels would be proposed and which levels could be saved, I don’t know. It would be prudent to talk to a scoliosis specialist to see what the options are. It doesn’t mean you have to have surgery, but it’s a start.

    After you get your digitals(coronals and sagitals) burn to disc, you could simply e-mail this data and save the travel......There are several options on this, depends on who you like, and where, if a surgical decision is made.

    If a surgical decision is made, recovery will take time as fusion takes time....I would bet that any surgeon would say, No horseback riding for a year.

    Let her dwell on surgical decision.....give her the time needed to adjust should this happen. Shock, disbelief, why me, anger, and wondering about our future are all questions and emotions that will arise......We have to shoulder all this weight, it’s a ton of bricks. Education and talks are the best way to handle this.

    This is where scoliosis meetings come in. The meet and greet process.
    I like Linda’s site.
    http://www.scoliosislinks.com/

    Meetings list
    http://www.scoliosislinks.com/SupportGroups.htm

    If you would like to talk on the phone, PM me with your phone #, I’m home today. I will explain the pro’s and con’s of surgery, but mostly the education process in making the informed decision. Most fail at this, and can end up bitter about expectations.

    Ed
    Last edited by titaniumed; 01-13-2013 at 12:27 PM.
    49 yr old male, now 58, the new 53...
    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

  9. #39
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    Jan 2013
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    Ed,

    Just sent you a pm. Took me quite a while as I didn't realize there was a character limit!

    Emy

  10. #40
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    maybe with some injuries, the pain is later...
    but i have never seen a disc blow that didn't hurt immediately...
    and then hurt worse a day or so later, if it goes untreated!
    discs can cause so much extreme pain, including with
    people who have otherwise healthy spines!!

    too bad young Bloomberg cant "stand up for animals" enough
    to convince her father to eliminate horse and carriage rides in Central Park...
    those poor horses suffer such awful treatment, it is horrendous!!

    jess

  11. #41
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    Mar 2010
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    Quote Originally Posted by leahdragonfly View Post

    I recently asked about Scoliscore for my 7 y/o son who has an 18 degree curve and a strong family history. The pediatric spine specialist felt it was a waste because he would still need to be followed, and he said it would not change treatment. I don't really agree, since if we got a very low (risk) or very high-risk score, it might help guide treatment decisions. To me it is potentially an extra bit of info, however, it seems that not too many orthos have embraced the Scoliscore for what it is supposed to be at this point.
    Gayle,
    Scoliscore is for AIS. Your son has JIS, so don't think it would be very useful. Your doctor is right about following your son with such a strong family history and having other kids who have gone on to progress to surgery. On the bright side, my son was about 8 years old and diagnosed with a curve about that size. By the time he was 14, his curve had completely resolved on it's own. It does happen. I would watch your little one like a hawk anyway. I hope he's one of the lucky ones. You deserve a break.

    Emy,
    I looked at your daughter's x-ray. She looks like she stands pretty straight for having such a tight curve there. Her hips look even, too. I would definitely take her to a specialist and have that looked at, though. As far as taking her to a specialist at a Shriner's hospital, most of those doctors, if not ALL of them, have private practices. So after she's 18 she could probably follow up with one of them anyway, just outside of Shriner's. So I might look for a doctor with a good reputation at a closer Shriner's that she can still see after 18. Just a thought. I hope the best for your daughter.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  12. #42
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    Oregon
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    Quote Originally Posted by rohrer01 View Post
    <snip>Gayle, Scoliscore is for AIS. Your son has JIS, so don't think it would be very useful. Your doctor is right about following your son with such a strong family history and having other kids who have gone on to progress to surgery. <snip>
    Hi rohrer,

    you're right about scoliscore being labeled for AIS. But, I have talked to quite a number of families now whose JIS kids of age 8 or 9 had the scoliscore done. Our ortho (locally, not at Shriner's) said he thought it should be accurate, because you have the same genes at birth as you do for your whole life. I just think he feels it wouldn't be helpful in changing treatment, since so many kids test in the large middle range.

    I think eventually the scoliscore will be validated for use in JIS kids. Our family sent in research samples for JIS research to Axial Biotech last year. I think that Axial can't market the scoliscore for JIS until it is validated by research in the JIS population, which is small.

    Thanks for sharing your thoughts! Still looking for my crystal ball........
    Last edited by leahdragonfly; 01-14-2013 at 07:57 AM.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  13. #43
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    Aug 2004
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    ny
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    Quote Originally Posted by jrnyc View Post
    too bad young Bloomberg cant "stand up for animals" enough
    to convince her father to eliminate horse and carriage rides in Central Park...
    those poor horses suffer such awful treatment, it is horrendous!!

    jess
    Ah, Jess, my daughter would hug you for posting that (me too)!! Not just horses, but unfortunately lots of other animals are mistreated in the food and other industries. My daughter has educated me a lot on this topic and it's very, very sad.
    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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    Mar 2010
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    Quote Originally Posted by leahdragonfly View Post
    Hi rohrer,

    you're right about scoliscore being labeled for AIS. But, I have talked to quite a number of families now whose JIS kids of age 8 or 9 had the scoliscore done. Our ortho (locally, not at Shriner's) said he thought it should be accurate, because you have the same genes at birth as you do for your whole life. I just think he feels it wouldn't be helpful in changing treatment, since so many kids test in the large middle range.

    I think eventually the scoliscore will be validated for use in JIS kids. Our family sent in research samples for JIS research to Axial Biotech last year. I think that Axial can't market the scoliscore for JIS until it is validated by research in the JIS population, which is small.

    Thanks for sharing your thoughts! Still looking for my crystal ball........
    I do tend to agree with you. I read a recent article that talked about the overlap and that there was no way to determine absolutely which category a person's IS falls into. There are many cases of "AIS" that are really JIS. It's just a matter of age at diagnosis. I started having back pain at eight years old, so I suspect mine may be JIS, also. Oh, and my DNA and that of my parents was also contributed to that study. =)
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  15. #45
    Join Date
    May 2009
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    Maria...your daughter sounds so smart!

    too bad Bloomberg's political protege...the woman who will run
    for mayor (after he ends his illegal 3rd term)....
    does not care much about animals either, and has the mayor's
    position on carriages in Central Park...
    i try to avoid going thru the Park when in the city, just so i do not
    feel sick seeing the poor horses looking so miserable!
    i wish there was a way to hook the mayor up to a carriage for a day...
    see if that would change his uncaring mind!

    (sorry for diverting from thread for a minute)

    jess...& Sparky

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