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Thread: new diagnosis

  1. #1
    Join Date
    Feb 2007
    Location
    Richland Center, Wisconsin
    Posts
    8

    new diagnosis

    My daughter was diagnosed with scoliosis one month ago. She has a 49 degree thoracic and 29 degree lumbar curve. We have met with the surgeon and he has advised spinal fusion. Everything we have read states that bracing won't help. We have educated ourselves regarding sugery etc. My ? is that we are having second thoughts and want to hear from simliar curveture patients or famlies about their experiences of surgery or not. We are really worried. Thank you.

  2. #2
    Join Date
    Mar 2005
    Location
    NJ across from NYC
    Posts
    329
    How old is your daughter?
    1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
    2000 Partial Rod Removal
    2001 Right Scapular Resection
    12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
    06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

  3. #3
    Join Date
    Feb 2007
    Location
    Richland Center, Wisconsin
    Posts
    8

    new diagnosis

    Sorry, left out that info. My DD is 11 yrs old, just started her growth spurt and has not had her first menses yet. Do the rods have to be removed in the future after fusion??

  4. #4
    Join Date
    Jan 2007
    Location
    Mississippi
    Posts
    37

    aly.........

    I was reading your posts and tears came into my eyes! You sound like my mom talking. Actually, I wore the milwaukee brace from about age 2 until around 18. The ortho doctor I was seeing then recommended that I have surgery. He said the brace had done me no good. My mother "just couldn't bear to do it to me". Now, I am 49, in terrible pain and my curve just keeps getting worse. Do you understand what I am saying? They say I don't need surgery now because it would take up to four different surgeries to complete the process IF my surgery even worked. Note: I have osteoarthritis and degenerative bone disease in most of my spine, along with osteoporosis. Not much to work with now at my age. But, they've put me in a body jacket that is very painful and almost impossible to tolerate. I can handle pain but the thought of them telling me 'YOU'LL WEAR THIS UNTIL YOU TAKE YOUR LAST BREATHE" is really hard to swallow. Believe me, if th doctors tell you that scoliosis is a painless disease, turn around and slap him then and hope you knocked some sense into his crazy little head. Scoliosis is very painful especially when you are 40-50-60 years old.

  5. #5
    Join Date
    Mar 2005
    Location
    NJ across from NYC
    Posts
    329
    Hi Alyssah - Bracing will not help at this point as the curve is too high. Since she has not had her first menses yet, and just started her growth spurt, there is a good chance her curve will continue. Rods do not have to be removed in the future unless there are problems. Is your DD experiencing any pain? What state are you from? Good luck. LYNN
    1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
    2000 Partial Rod Removal
    2001 Right Scapular Resection
    12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
    06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

  6. #6
    Join Date
    Feb 2007
    Location
    Richland Center, Wisconsin
    Posts
    8

    new diagnosis

    Thanks for your thoughts. We pretty much figured that her curve would get worse. We are from Wisconsin and her Surgeon is Dr. Noonan from UW Pediatric Hospital. Has anyone heard about him? He was wanting to fuse from T4 through L2. Does that seem like alot of fusion? She is a dancer along with Volleyball and Basketball. We are so worried about her outcome as he wants to do the surgery sooner then later. Thanks again for all the information. We need all we can get. She does have some pain with activities, as that is how I found it myself by giving her a back massage. Her test was negative for scoliosis in Aug 2006 during her sports physical. It amazes me on how fast it can happen. I feel like I am checking out all of her little friends at school!!

  7. #7
    Join Date
    Mar 2005
    Location
    NJ across from NYC
    Posts
    329
    Linda Racine, this sites moderator with a wealth of information, perhaps has information or has heard of Dr. Noonan. I'm sure when she reads this, she will respond. She has helped so many, especially new participants like yourself. Take care, LYNN
    1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
    2000 Partial Rod Removal
    2001 Right Scapular Resection
    12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
    06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

  8. #8
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Your daughter is very young to be having fusion surgery. Her curves are not extreme, and she has lots of growing left to do. Unless there are other medical reasons to rush into surgery, this is not an emergent situation. You have time to research and find the right recommendations for her. Second, third and more opinions are highly recommended. This is not an easy decision. Spine surgery is a HUGE procedure and never to be taken lightly. Sometimes surgeons are almost flippant about recommending surgery sooner than later, because they are probably right - the patient will eventually have surgery. However, the timing is very important. You want to reduce as much risk as possible so that if she does have surgery, its at an optimal time and place, and done by the right surgeon. Good luck.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  9. #9
    Join Date
    Jan 2007
    Posts
    9
    Alyssah,

    I, humbly and strongly, would suggest if you have doubts that you get another Dr. opinion. You can absolutely LOVE your doctor....but when it comes down to surgery on your child and your gut is telling you 'whoa nelly' maybe it is time to check in with another doctor..is Shriners an option for you?

    I have read it over and over on this website that scoli is not an emergency... so taking a small amount of time for a second opinion to calm your nerves will only be a GOOD thing.

    Good luck,
    MBG

  10. #10
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Alyssah,

    I agree with Carmell and MBG. While your daughter may, in fact, need to have fusion surgery somewhere in the future, I would definitely get a few opinions at least so that, as stated above, surgery is performed at right time, by the right surgeon.

    I also agree that Shriners would be a good place for another opinion. I don't know if it is feasible for you to travel to Philadelphia, but my experience with the team of spinal surgeons there, led by Dr. Betz, has been amzaing. I believe that Carmell, as well as some others, have also had very good experiences at the Shriners in Salt Lake City.

    Best of luck and keep us posted.
    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/

  11. #11
    Join Date
    Feb 2006
    Posts
    78
    Alyssa- I agree with everyone who suggested that you get a few 2nd opinions. That's exactly what I'm doing. My daughter will be 15 years old on March 10th & her main thoracic curve is EXACTLY the same degree as your daughter (49). My daughter's been wearing a brace for a year (Wilmington Jacket) & as of Dec. 1, 2006, when her 45 degree curve progressed to 49, her doctor gave her 4 more months in her brace to see if her curve can stay at 49 so she can avoid surgery. He said he'd much rather see her live her life w/her own "flexible" back, then with a "rigid" fused one. We go back to him on March 30th for the final verdict. In the meantime, I have 3 other opinion appointments set up. Of course, my daughter is older than yours & she has just about reached skeletal maturity, but I still strongly recommend that you get more opinions.
    Good luck & stay strong,
    Martha
    P.S. My daughter's lumbar curve is 32 degrees.

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