Page 1 of 3 123 LastLast
Results 1 to 15 of 34

Thread: Newly Diagnosed - Mom's a Mess

  1. #1
    Join Date
    Apr 2007
    Location
    Orange County, CA
    Posts
    47

    Newly Diagnosed - Mom's a Mess

    I'm new here. My daughter, Mackenzie, was recently diagonosed with scoliosis (40 degree thoracolumbar; 28 degree thoracic). She gets her Boston brace this coming Thursday and is to wear it 23 hours a day. Mackenzie is 13 and in 8th grade. She has already declared she won't wear it to school - that it would be "social suicide".

    I'm a mess. We've already been told that she will more than likely need surgery when she stops growing - which the doctor estimates to be about 18 months (risser 2.5-3? not really sure what this means).

    This has been really tough on me. I took her to the pediatrician a little over a year ago because one hip was higher than the other and my neighbor suggested I have her checked for scoliosis. The ped said she didn't have it - and I (stupidly) thought she was ok forever. He did x-ray her legs to see if there was a leg length discrepancy. There wasn't - so he said he'd keep an eye on her (in case of a congenital hip problem) and to bring her back in within the next year.

    7 months later her father was killed in an accident and I didn't get her back. I finally made an appointment in December and a week before, the office called and cancelled because her ped was out on a family medical emergency. I didn't feel any urgency. I called again in February. He was still out. Then in March, I noticed Mackenzie's back looked weird. Of course, I panicked. Called a friend who is an ortho spine and he saw her. He immediately referred us to a specialist and that's where we are today. (It helps to be a hospital administrator - unfortunately, my hospital does not do peds).

    I vascilate between feeling guilty that I didn't take her back sooner - and angry with the pediatrician who totally missed the scoliosis (no x-ray of her back and both specialists have said it was there a year ago - it doesn't go from 0 to 40 in a little over a year).

    Mackenzie has been through enough in the last year. My heart breaks for her. And I break in tears at odd moments.

    I appreciate you listening. I'm sure I'll have lots of questions (already do). I plan to take her for a 2nd and a 3rd opinion as soon as she gets her brace (and I get her x-ray back).

    Thanks again.

    Mackenzie's Mom (Lisa)

  2. #2
    Join Date
    Dec 2005
    Posts
    40
    Hi
    Try not to beat yourself up over not getting your daughter into the Dr sooner or not noticing,etc.. sooner. It sounds like you both have been thru the ringer this past year (& I am so so sorry for the passing of your husband also) and now all you can do is move forward with the scoliosis. It sounds like you are now on the right track and doing a great job! Scoliosis is not usually an emergency situation and right now her curve is not major so you have time to find the right Dr and find the right treatment to do.

    I noticed you are from OC, CA and I too am from the OC-Huntington Beach to be exact. My son, Cole is also 13 and has severe congenital scoliosis that he was born with. You know even tho he was born with it and found out at birth I too regret not getting him to a Ped Ortho Spine specialist alot sooner. He was born with scoliosis and some other medical problems and was in neonatal for a week after birth then we were sent to a regular sports medicine Ortho Dr(that treated adults also) per our Insurance-HMO at the time which has now changed, thank goodness. Finally after just wasting time going in for periodic xrays and nothing happening I was at my wits end and starting to write a letter to the insurance Co to get him referred elsewhere that this Ortho Dr realized how severe Cole's curve was and sent us to UCLA. So by then it was way over 100 degrees and so at 18 months Cole had his first fusion surgery. Now after 9 surgeries on his back (which include 2 rods and halo surgery) he is going to have a final fusion surgery this summer that will hopefully be his final surgery. So what I am saying is I can understand your frustration with not getting her in sooner, as the Mommy we know we have to do what is right for our child but sometimes things just dont work out that way right away and eventually you get on track. We now go to Childrens Hospital in Los Angeles and have had nothing but great Drs since going to UCLA. What Dr/Hospital do you go to? CHOC? I know others that see the Orthos there and I have heard good things about them, we go there for Pulminory and have been for other specialists also. Where were you thinking of going for other opinions? I highly recommend CHLA and see either Dr Tolo (Director of Ped Ortho) or Dr Skaggs (Asst Director). We saw Tolo for 3 yrs (he did two surgeries including Halo surgery) and now we see Skaggs.

    You have found a great place for much support and to answer many questions that I am sure you have. Oh what type of scoliosis does Mackenzie have? Obviously not the same as Cole's as that you find at birth or as baby. Good luck with everything and feel free to send me a private email if prefer or if you want me direct email let me know. I feel a slight connection since you live in Orange Cty and then your daughter being same age as Cole. Also, hopefully Carmell will chime in here soon - she is wonderful and a wealth of info! Has helped me thru alot over the yrs.
    Stacey

  3. #3
    Join Date
    Sep 2005
    Posts
    877
    Lisa,

    I am very sorry to hear of the passing of your husband. I hope you have a lot of family around you. Please know how much I can relate to you regarding your daughter and her scoliosis. Everyone here knows my story where my Nicole was checked by the ped in the beginning of 5th grade and I was told she had a slight curve and should bring her back in 6 months. I didn't bring her back for that, but throughout the year she had asthma and bronchitis and was back at the doctor at least 2 times. I didn't remember or didn't think it was important for them to look at her back. None of the doctors who I saw mentioned anything so I guess it wasn't on her record. When I was a teen they had sent me for x-rays because they thought I had scoli and it turned out to be nothing. So I didn't take this seriously. Ninety percent of the kids would turn out to have nothing.

    One year later at her next appt., her ped's face was white when she looked at her back. We went to the ortho and found out she has the exact curves your daughter has. With a risser at 0, they told us she will eventually need surgery and prescribed a boston brace.

    I believe I was depressed for months. I cried and cried out of guilt and fear for my daughter. My ped should have sent me for x-rays or told me to go to an ortho, I would have done that. I dropped the ball.

    We refused to put her in that brace and she wears a Spinecor. It is 20 months later and her curves are in the 40's and 30's. She is probably done growing and has had her period for a full year.

    Her back looks terrible to me. When she bends down she has a rib hump. She is a passionate dancer and competes. We go back in May to see how she is.

    We are in the same boat. Please know we will all get through this one way or another. Everything will be okay for our girls. Let me know if you want to talk further.

    God Bless.

    Melissa
    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

  4. #4
    Join Date
    Jan 2007
    Location
    Ontario, Canada
    Posts
    140
    Hi Lisa,
    I too am very sorry to hear your husband has passed away. You've had a rough year. Please come and vent here as often as you need to. I personally find this forum (and spinekids.com) to be the friends who really understand what we are going through and I always feel better after venting here.
    Our discovery of our sons scoliosis is similar to yours.
    Unfortunately his was way past the bracing phase when discovered and I suffered immense feelings of guilt and saddness that I just hadn't seen it before.
    The first doctor we went to (our regular doctor was on holiday) said yes he has scoliosis but it isn't too bad -he based his theory on physical examination.
    Patrick was xrayed-at my request. The doctor set us up -on my request again- with an general ortho for an appointment 10 months from that day. If we went with that we would not yet have seen this ortho and my sons curves are now past 80 degrees and he is having surgery next week. As it was my real doctor saw the xrays when she got back from vacation, called us in immediately and set us up with an ortho at a children's hospital (she told us the other referal doctor doesn't even deal with scoliosis so if we had seen him after the ten months we would have had to wait further time to get an appointment at Sick Kids Hospital) I sometimes think I should go back to that first doctor and tell him of his major mistake.
    I too have shed so many tears over the past 10 months and they still keep falling.
    I can't help you with the bracing issue because we have never delt with it but I know with my son I made sure he knew everything about scoliosis and the longterm prognosis and all the different scenarios. It made it much easier for him to accept his need for surgery when I had to tell him this. So I am thinking with your daughter the more she knows and understands the easier it might be for her to accept the brace. Also encourage her to talk to others especially on spinekids.com. The kids are very supportive of each other.
    I wish you luck and please come back with questions or just to vent
    Ramona
    mom of Patrick, age 15 at time of surgery
    diagnosed July 2006 curves T58 L 38

    Nov. 2006 curves T72 L38
    also lordoscoliosis

    feb.2007 curves T79 L43

    Surgery May 16 2007
    fused T4 to L1

  5. #5
    Join Date
    Jan 2006
    Location
    Southern California
    Posts
    59

    To Mack's mom

    I wanted to add my condolences on the loss of your husband - it must be so hard. I'm in Orange County too - Yorba Linda as a matter of fact. My daughter is now almost 17 with 40/45 degree curves. We discovered she had scoliosis when a friend pointed out a weird raised area on her back. I thought it was some kind of tumor and was freaking out. Turned out it was a 39 degree curve. She wore a hard brace and more recently SpineCor and we have a wonderful doctor in Tustin. The initial couple of years were scary and I was a mess, always feeling sick to my stomach with fear. It will get better. If you'd like to talk in person, just send me a private e-mail and I'll give you my phone number.

  6. #6
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome Lisa and Mackenzie,

    Ditto what the others said. You have been through more than your share of trials and stresses in life. I just wanted to add that guilt and regret are useless emotions. Dwelling on what you should have done, or what others should have done won't change the facts that you are dealing with a child who has scoliosis. You both will do great. Like the others said, scoliosis is rarely an emergency condition. You have time to research and find the right specialist who has the right plan for her. I suggest you see a pediatric scoliosis specialist who has extensive experience treating similar cases. Two of my children have scoliosis. My 21yr old daughter has a 35 degree lumbar curve with an upper compensatory curve. She wore a brace for about 6 months total. She didn't like being in the brace at all. Her highest curve measurement was 40 degrees, but has settled to about 35 degrees where it has maintained for several years now. She has never had surgery. It is something we watch, occasionally, and hope (and pray) she'll never progress and need surgery as an adult.

    My point is that there isn't a single right answer for scoliosis treatment. You must find the right treatment option for her, one that works best for you. Maybe the wait-and-see game is best for you both. That is an acceptable option, if you know what to watch for and are vigilant in getting xrays and observing the spine. Exercise is great for anyone with spine issues. Keeping your muscles and soft tissues strong and supporting the spine helps a lot, especially if surgery is one day a recommendation. The better off you are physically, the better the outcome, generally.

    Take a few deep breaths. This is going to be just fine. You are doing great. Do what you need to to get over the guilt, then move on. Try to enjoy life. These kids grow up so quickly. You don't want to regret not sharing each day with her and having good memories for both of you. Keep us posted on what you decide.

    My best,
    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/

  7. #7
    Join Date
    Apr 2007
    Location
    Orange County, CA
    Posts
    47
    Thanks everyone for the support. We live in Tustin Ranch. Mackenzie was seen by Dr. Nitin Bhatia at UCI. I would like to have her see Dr. Skaggs at CHLA for a second opinion - as well as Dr. Peter Newton at Children's Hospital, San Diego. I hear they both have wonderful reputations.

    As a hospital administrator, I know the importance of finding a doc who has done enough of these surgeries to make them an expert - but one who is not too advanced in age (for obvious reasons).

    Dr. Bhatia is the co-director of the UCI Spine Center, has wonderful credentials including an ortho residency at UCLA, a spine fellowship at University of Miami/Jackson Memorial and a pediatric spine fellowship at Miami Children's. We really liked him and the spine surgeon at my hospital raves about him. We may choose to stay with him - but again, I'd like her seen for second opinions by surgeons who focus only on children.

    One of you mentioned a doctor in Tustin - who does your daughter see? I have spent the last month researching everything there is to know about scoliosis. Mackenzie has AIS - and I feel we could have prevented it getting so big had the pediatrician caught it last year. He, too, only did a visual check.

    Of course, Mackenzie would rather just have surgery and get it over with - even though she understands why Dr. Bhatia wants to wait until she's stopped growing. She just started her period in December - so he feels she has a year and a half of growth left.

    Thanks again for the warm welcome. I am much better than I was in the beginning. It was just so hard - and too much to take in. Couldn't figure out if I was depressed because of the scoliosis or it was hormones - or both.

    Lisa

  8. #8
    Join Date
    Sep 2005
    Posts
    877
    Lisa,

    The good news is that her major growth spurt is probably behind her. Most girls only grow an inch or two more after they get their period. How tall is she? Our ortho said the most critical growth spurt is the one before the period. You are past that point. It is possible she won't progress further. Keep up the hope.
    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

  9. #9
    Join Date
    Jan 2006
    Location
    Southern California
    Posts
    59

    Doctor in Tustin

    To Mack's mom,
    You asked about our doctor in Tustin - Dr. David Gorrie. He is not an orthopedic surgeon. My daughter sees him for the SpineCor brace and for physical therapy. I just sent in an application to Shriners LA for a surgical opinion. I think my daughter is on the borderline but she is interested in finding out about the surgery. Others on the forum rave about the doctors at the various Shriners Hospitals. I'm happy you gave the names of the doctors you have seen - it will be good to see one of them for a second opinion.

  10. #10
    Join Date
    Apr 2007
    Location
    Orange County, CA
    Posts
    47
    Mackenzie is 5'2". Her doctor says she'd be about 1 1/2 to 2 inches taller without her curves. I am 5'5" and her dad was 5'10", so I'm guessing that
    5 4 or 5 5 would be about right for her.

    Thanks for the referral to spinekids.com. I think I'll try to get her to "lurk" there (until she gets brave enough to join in). At least it should make her feel a little bit better knowing there are lots of kids with scoliosis.

    Is LA Shriners the same as Childrens LA (CHLA)? You'd think I'd know that.

    I'm hoping that Thursday won't be too traumatic for her. I worry that the brace will either make her retreat inside herself or push her the other way.

    I do have a question for those of you who's children wore the brace. Were they compliant with the 23/7 or whatever hours they were supposed to wear the brace? It just seems like a lot to me - so I can't imagine how she feels.

    Lisa

  11. #11
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi again, Lisa,

    About bracing - my daughter's ortho believes that 23/7 in the brace can cause muscle atrophy (for those dedicated to wearing it the actual 23 hours a day). Their "new" thinking is to wear the brace 16-18 hours a day, with some PT to teach them to use their own back muscles to support the spine as if they were in the brace still. Again, this takes dedication and commitment, but it is do-able. Being able to use your own back/side muscles to support the spine helps the muscles not atrophy and helps them stay strong while in the waiting stage.

    Another comment is that some orthos don't have 100% confidence in bracing to begin with. Some believe that a curve will progress with or without a brace, so why bother being in a brace (those patients who have underlying causes for scoliosis like neuromuscular disease, etc. are exceptions). My daughter had a TLSO brace but only wore it 12 hours a day, at most. She was one who refused to wear the brace, even knowing what scoliosis surgery was like. My 11yr old son has had multiple surgeries to stabilize his scoliosis. Bracing works for some, and others, it doesn't. Each patient is very different. Each brace type is different, and has a different purpose. Lots of things to know. Having a PEDIATRIC orthopedic spine specialist would be your best bet. Having more than one opinion will help too.

    Good luck and keep us posted.
    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/

  12. #12
    Join Date
    May 2007
    Posts
    1
    Hi,

    I'm also new to all of this. My daughter was diagnosed last week with a 30 degree and a 20 degree. I have spent the last week reading this forum and any other site that was suggested. My daughter had a 10 degree and a 11 degree 4 years ago. We watched her closely for 1 1/2 years until her ped ortho said we could just monitor her. When my younger daughter got checked, we decided to recheck my older daughter. I was shocked when her minor curves grew to severe!

    After spending so much time on the internet, I realize curves can and often do grow regardless of wearing a brace. Your daughter could have spent the last year in a brace and it might not have made one bit of difference! Read the posts from the girls that are wearing braces now and how many of them are still planning on going to surgery. Maybe God was looking out for you when you didn't get her checked. She had enough on her plate the last year without having to deal with a back brace! So did you!

    Don't beat yourself up. Research, get her checked and rechecked. Only peole with curves over 100 degrees have serious health issues. What I found was the main reason people get surgery for AIS is so they look better.

    FYI, my grandmother had AIS, had a cast, had a brace and felt it did not make one bit of difference. When my father had AIS, she chose to do nothing. When I was diagnosed with AIS, they told me to do exercises which my daughter's doctor basically means no treatment.

    Now, my daughter's ped ortho is doing a study to find out if braces work. I told him regardless of a study we will do what is right. He said we don't know for sure what is right.

    Sorry for being so long winded. I just want to say it's ok. What you did or didn't do is ok. There was a very good chance that everything would have turned out the same!

  13. #13
    Join Date
    Apr 2005
    Location
    the uk, between london and the south coast
    Posts
    142
    i'm really sorry to hear about everything you've been through. i think the first thing (and this is probably the hardest as a parent) is to stop beating yourself up about it. i'm no medical professional but i'm going to contradict what you said about it being impossible for a person's spine to go from 0 to 40 in a year: it is possible for things to happen that quickly, i have seen this in other patients and my surgeon has mentioned it to me and my parents too.

    i think my mum hid it from me but when i was diagnosed, i'm pretty sure she felt similarly to you and suffered from guilt. my surgeon was quick to tell her that she shouldn't feel guilty, that she'd done well to pick up on my problem when she did, never mind miss it for however long it was there. some people don't realise until they are much much older that something is wrong and whilst it's not impossible to seek treatment as late on as in your eighties, it's much easier to treat a teenager than it is an octagenarian.

    as a parent you can only ever do your best and i think that's what you're doing (well done on pulling strings at the hospital - if you've got connections, use them!)

    as for your daughter's belief that a brace will be "social suicide"... i know exactly how she feels and i'm sure many people can relate. but at 13, i think it's important to encourage her to try and look at the long term. i hated the idea of being braced but what it did was buy me time. it allowed me to continue growing and i was able to put surgery off for four years without my scoliosis getting dramatically worse.

    i hope that she has a core of good friends who she can talk to and who can offer her support. i also hope that she doesn't suffer at the hands of some thoughtless peers at school who may find it amusing that she has to wear a brace. it's a very hard lesson to learn that the best thing for you is not always the easiest thing.

    best of luck on getting through this, if you have any questions, feel free to ask.
    diagnosed aged 14 (2001)
    braced from july 2001 to february 2003 to hold curves
    fused T11-L3 on july 16th 2005 (aged 18)
    Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
    scoliosis support forum

  14. #14
    Join Date
    Sep 2005
    Posts
    877
    I think everyone has given Lisa amazing advice.

    But Shocked Mom, I have to disagree with you when you say that most of the people have the surgery because of cosmetic reasons. I have not met one person yet who is in my position who chose surgery for that reason. Just the opposite. They are saying that regardless of the looks, they are only having it done if it is a health issue. My daughter will only have it done if it is medically necessary.
    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. #15
    Join Date
    Mar 2007
    Posts
    11
    Lisa -

    Sometimes scoliosis can come on pretty quickly so it is especially easy to miss it. I am a physical therapist and I feel like I didn't do enough to catch my daughter's. It was noted on her school physical in Aug '05 and I looked at her - her spine was barely curved but I did see a small rib hump. I couldn't get an appointment with a pediatric orthopedist until Jan '06 but I wasn't concerned since most cases of scoliosis only require monitoring. Then, at her appointment, I almost cried when I saw how bad it had gotten and felt guilty for not watching it more closely. It was already 44* by her appointment.

    We tried the Providence brace for 4 months - this is used only at night so compliance can be alot better (she was 13 then too, now 14). However, by July '06, the curve increased to 56* and the surgeon felt her only option was surgery. Now I wonder if I had pressed for a typical TLSO that has more documented success if the curve would have progressed as much. I tell myself it would have progressed no matter what (and the surgeon feels this way) but that is the "mother guilt" kicking in!

    So, do your research and get second and third opinions and follow your gut opinion about what is right for your daughter. Again, remember it is not an emergency surgery and you have some time to look at various options. Good luck to you!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •